Chronic pain – Chronic musician

The burden of proving you’re “Disabled enough”

Something I don’t think people who aren’t chronically ill/disabled understand is the constant burden of having to prove you are sick or disabled enough for the various types of help that you need to be able to exist in society.

Many people assume that if you are sick or disabled, you will get the help you need without too much fanfare, I have even heard people say that if you don’t get a particular type of help, that must mean you aren’t sick/disabled enough, as they assume that anyone who qualifies will get it automatically, but this simply isn’t the case.

There are so many types of help disabled people have to apply for, and for all of them the burden is on us to prove we are “disabled enough” to qualify, and if for any reason the people in charge of the scheme or benefit don’t agree with you, you just don’t get awarded.

Just recently I have experienced this. I won’t name the company, but I have been a holder of a document that helps you access facilities when you book or attend things such as gigs, festivals, amusement parks and more. It is well recognised and a lot of companies trust it, so a lot of places will as for it to prove you are eligible for the help you are asking for.

I have been using this document for six years. When you apply, you tell them what help you need, and they look at the application and your evidence, and decide if they agree. They then put symbols on the document to let venues etc know what help you require.

The first time I applied, I got all the symbols I asked for, without any issues. When the card needed renewing, I sent the same evidence again, as it was still in date, but this time they said they couldn’t issue one of the symbols, which was to show that I needed a carer. I contacted them and they told me their policies had changed, and that I needed a more specific letter proving I needed help while out that was more than a friend would normally provide.

I got a letter from my GP stating that I need help with injections, and that I need help safely getting out in emergencies, communicating and sometimes with other medicines and other miscellaneous tasks that enable me to go out safely. The company agreed that this was a higher need than they would expect a friend to manage, and gave me the carer symbol.

This month, it needed renewing again. I sent off the documents, including the letter stating I need significant help while out, including needing someone to inject me if I am unable to do it. I also added newer documents from my neurologist that showed my diagnoses, and a copy of my oxygen prescription. Again they came back and said they could not issue the carer symbol. I have emailed back and I am waiting for a response.

Keep in mind the evidence I gave is the evidence they specifically asked me for. There is a charge for the document, and, if I was to go back to my GP and get another statement of fact letter then I would be charged for that too. That isn’t something I can afford every time the document needs to be renewed.

Without the carer symbol, I have to pay for someone to come with me to anything I do, I no longer go out alone unless there is no choice (i.e when I go to hospital via ambulance transport). I cannot go to a gig, or the cinema, or a museum, or a normal doctors appointment by myself any more. The last time I tried it ended in extreme pain and being unable to cope. This places yet another financial and emotional burden on me. If I can’t afford to pay for someone to come with me, then I can’t afford to go at all.

I totally understand that things like this document, and benefits and blue badges etc need to be protected. If they are given to anyone who asks for one, they will loose credibility, but, as a disabled person, it is very hard to keep proving yourself, especially if the goal posts keep being moved. Each time I have applied to renew this document they have changed the requirements for evidence, making it impossible to keep up with and forcing me to pay for more documents I will probably only use once.

This isn’t an isolated incident, so many companies and government schemes do this. They say it’s to make sure the right people get help, and I am sure thats part of it, but the reality is that people who need the help are also being shut out. I cannot afford to keep paying for more evidence, so I am shut out of so many things that are supposed to help me.

Then there’s the emotional toll of constantly feeling like you aren’t “disabled enough” every time you get turned down. It makes you feel like you don’t deserve the support, like there’s some sort of competition and you lost, and this is a constant part of the lives of disabled people.

Another thing people don’t realise is that this doesn’t just happen to people with temporary illnesses or disabilities. I have multiple permanent illnesses and even though I have provided evidence of this I am still expected to show new evidence whenever these companies decide. Again, I understand the need to make sure systems aren’t being taken advantage of, and there are some illnesses that get better, or where treatment will minimise symptoms and function can be improved, but if you have been told by your doctors that this is not possible for you, then this should be taken into account when applying for support.

There are many disabled people in financial or social hardship because they were turned down for help that they desperately need, and that needs to be addressed. We need a much better balance between safe guarding these facilities for those that need them, while also making sure that it doesn’t become inaccessible for those who truly need it. The stress and emotional turmoil of these systems has caused me to seriously question applying for many of them and I know I am not alone in this.

Alternatives to “Get well soon ” for people with chronic illnesses and disabilities

When we hear that someone is unwell, our first instinct is to wish them well, and hope that they recover quickly. This means a common response to someone saying they aren’t feeling too good is “get well soon” or ” I wish you a speedy recovery”. For most common ailments like the flu or a “normal” headache, this is a totally appropriate and often appreciated response.

This changes when the illness is chronic, and especially when the illness is known to be permanent and incurable. When you know that your illness will not get better, it can be jarring to hear “get well soon”, especially from people who you know well and have explained your situation to, but, its such an ingrained response, it can be very hard for people to know what else to say. Not responding or not wishing someone well can seem cold and uninterested, we want to show someone we care about them and want them to be OK, but sometimes the harsh reality is that they aren’t going to be ok for a very long time, and sometimes they won’t ever be truly OK again.

In this situation it is so tough to know what to say, so I would like to share my thoughts on what I would like people to say/ what I think would be helpful. As always, these are my thoughts and my thoughts alone, and do not apply to everyone, I speak for myself and myself only, not the whole chronic illness community, so be open to hearing other suggestions and/or opinions from the people in your life.

Suggestion one – I am sorry you are going through this, if you ever need to talk about what it’s like for you to deal with this, I will listen.

This lets someone know that you are aware that what they are going through is hard, and offers them a safe space. Very often people with chronic illnesses have to mask and pretend to be ok when really they aren’t, offering someone the chance to have an open conversation about what they are going through, with no masking and no worrying about being judged can be a huge gift. Only offer this if you can follow through, and remember that this is an opportunity they probably don’t get very often, so make sure it remains a safe space.

Suggestion two – I know that I cannot take away your illnesses, but is there anything I can do to make your burden lighter?

This shows you are aware that you cannot fix the person or their situation, but that you are willing to try and make it easier to bare. Asking what you can do allows the person to pick the thing they feel they need the most or are most comfortable allowing someone else to deal with. This could be something as simple as cooking them a meal, putting the hoover around for them, picking up a medicine from the pharmacy or picking up a child from nursery or school. Sometimes when your mind is overwhelmed with big things, the little things become a huge burden, and if someone can ease that burden it makes things feel so much more manageable.

Suggestion three – if they are cancelling an activity because they are too sick or there is a risk of the activity making them sicker, ask about an alternative rather than just not inviting them next time.

This is something I really appreciate when people do for me. Its one thing to miss an event because you have the flu, where you know you will get better and be able to join in next time, but when you are unable to join in because of chronic illnesses, you are very aware that you might not be able to join in for weeks, months or years at a time. There might be some activities you will never actually be able to do. I have had so many people give up on me, including people I thought understood, because I kept having to say no to specific activities, but everyone else wanted to keep doing them. Eventually they just stopped asking me, or making any attempt to make things accessible to me. People often think that if they can’t see why something is inaccessible, or why I am too sick to do something, then I am just making excuses. I often get told “get well soon and maybe next time you can join in”. I would absolutely adore it if sometimes they said “I’m sorry you’re feeling so sick, what if we come over and have a PJ day and watch movies all day” or ” I know eating is challenging for you, what if we did something crafty instead”. There are many ways hang outs can be made more accessible for your sick loved ones, it takes a little creativity sometimes, but it can be done. I am not suggesting that every hang out needs to be tailored to that person, but even one in every 3 or 4 hang outs being something they can join in with is so much more welcoming. Sometimes they may feel so sick that they cannot think of anything they feel up to doing, but thats ok, the fact you ask them will mean a great deal to them.

Suggestion 4 – I know this is really hard for you, and I know I can’t make it all better, but I have your back and you’re not alone

This is so powerful. Just knowing that someone has your back, that they understand things are hard and it’s not going to scare them away or make them think differently of you is so, so powerful.

Suggestion 5 – Do you need support to access medical help?

While there isn’t always something a doctor can do for chronic illnesses, if someone is having an acute flare of their condition and seems like they may be struggling beyond what is considered “normal” for that person, asking them if they need support to access medical care can be really helpful, provided you are respectful of the answer. I have had times where if I had access to better transport, I would book a GP appointment to get checked out , but because I am stuck with buses, I will wait things out and hope it doesn’t escalate far more often than I should. For me, going to the doctors and especially going to a hospital is something I do when I have no other choice, and the alternative is going to A&E because its heading towards and emergency. If someone was willing to help me get to the doctors, I would book more regular appointments to get check ups and discuss anything concerning me before it became an urgent issue. On the other hand, some people will ask me about going to the doctors when I am just experiencing normal aspects of my conditions and there is nothing a doctor will be able to do that I can’t do myself. I never mind being asked, but some people get really pushy, and this can be distressing.

Suggestion 6 – Is there anything I can get you to ease your symptoms?

This one I personally like. People are often quite quick to say to me “sorry there’s nothing I can do for you”, but they often haven’t actually asked me or thought about the types of things that they usually see me do when I am in pain. Some people though are very good at it, for example, I use a heat pad almost all the time to ease my pain, so , if I am in pain and I don’t have my heat pad, my fiancé will go get it or ask if I want it. My mother will ask me if I want my heat pad or a hot water bottle. This is a small thing, but it really helps. Unless you know someone very well or know what they need for specific symptoms its hard to anticipate needs like this, but what you can do is ask them if there is anything you can get to ease symptoms. These may include getting a heat pad, ice packs, pain medications, ginger tea for nausea, a blanket, a glass of water or something to eat, or a comfort item like a favourite teddy or comfy hoodie. These small things make people feel seen, and show that you are actively trying to ease their discomfort and care for them.

The biggest thing I would say with any of these is be consistent. Too many people with chronic illnesses feel like they are forgotten about after the first few months of illness. When you first get sick, you are often surrounded by people who want to help. There are visits and calls, gifts and meals, accommodations are made and everyone checks in to see how you are and what you need. After a while though, people go back to their lives, assuming that you are either better or “used” to the condition by now. The offers of help get further apart, people stop checking in, and instead of making accommodations people tell you to stop being lazy and to stop making everything about you. People actually get frustrated and even annoyed that you aren’t suddenly all better. So, the biggest gift people can give me is continuing to check in months and years after diagnosis, continue to offer help, to hang out, to show genuine interest in my well being and not make me feel like a burden or an inconvenience.

What I wish I knew when I first became unwell

They say hindsight is a wonderful thing, and this definitely something I think applies to life with chronic illnesses, so I thought I would talk about some of the things I wish I had known when I first became unwell.

1 – Doctors can be wrong

Yes, you read that correctly, doctors can indeed be wrong! Believe it or not, doctors are just human like the rest of us, so they can definitely make mistakes and be wrong about things, including diagnoses. There are many occasions looking back where I wish that I had spoken up and said “no, that doesn’t feel/sound right” and it would have saved a lot of pain and unnecessary testing. I am much better with this these days and always make sure I understand what a doctor is asking me to do and WHY they want me to do it. Taking this approach has saved me from some very serious complications in the past and is something I definitely recommend.

2 – Clear tests doesn’t mean nothing is wrong

I spent a long time thinking my symptoms weren’t serious or weren’t worth “bothering” the doctors with because blood tests and X-rays were coming back clear. No matter how bad the pain got, the tests would be normal and I would be sent away with painkillers and told things would sort themselves out. After suffering for a long time I finally got the courage to ask for an MRI, which gave us the first real evidence that there was something more serious going on. Even now, I don’t have any blood test results that definitively prove my inflammatory arthritis, but I have a diagnosis, because my symptoms were not going away and I respond well to steroids. Tests can be useful, they can give an indication of our overall well being, but they are not the best all and end all. If you had tests come back clear despite ongoing symptoms, keep fighting, don’t be put off until you have an answer you are satisfied with.

3 It’s ok to say no to a doctor

Growing up we are taught to respect doctors, they are authority figures, we go to them for advice and as such we should listen to them and take their advice, but, as a long term and frequent patient I have had to learn to be able to say no to them. One key example is when I went to see an endocrinologist for advice about my thinning bones and high calcium. He prescribed me a medication that I wasn’t totally comfortable taking, so instead of just taking it , I went to someone I trusted, my IBD nurse and asked her advice. At the time I was undergoing brace treatment ready for surgery to correct the position of my jaw, being aware of this my IBD nurse advised me to speak to my orthodontist before taking any of the medication. When I spoke to the orthodontist she told me that if I took even one of those tablets they would have had to take my braces off there and then and cancelled my surgery. It turns out the medication was known to cause necrosis in the jaw bone if the jaw was moved or manipulated in any way and there was a decent chance of it happening to me if we continued with treatment. There was no blood test able to detect this medication in the blood, and the half life (amount of time it stays in the body) was unknown, so they wouldn’t be able to tell if the medication was still in my blood stream, meaning that they wouldn’t have even been able to do the surgery at a later date, it would have been cancelled completely. Me saying no to that endocrinologist saved my jaw and possibly my life. If a doctor ever tells you to do something that you know is incorrect, or that you just have a bad feeling about it’s totally OK to just say no and/ or request an opinion from another health care provider.

4 It’s OK not to be OK

For a long time I would bottle things up and if someone asked how I was I would always say I was fine. My logic was that people didn’t need me to keep saying I was sick, that it would just be complaining and that they didn’t need to hear that. For a long time I thought “They know I’m sick, they know I won’t get better, no need to keep saying I’m sick”. Unfortunately that meant that I was keeping my suffering to myself, I was saying I was OK when I really deeply wasn’t, I didn’t want to burden people, but in trying to protect everyone else I was making myself suffer more than necessary. You don’t have to dwell on your illness if you don’t want to, and it doesn’t have to come up in every conversation if you would rather it didn’t, but keeping it to yourself may not be the best thing for you. If you have family and/or friends that you can trust then let them in, let them know you’re not ok, even if that’s just telling them how much pain you’re in, its ok if you aren’t OK and you shouldn’t have to hide it from the people who are supposed to care about you.

5 – Its ok to put your needs first

This is something I find particularly tough. I have always been a listener, an agony aunt if you like, I have always wanted to help people as much as I can and would often put my own needs aside in order to be there for others. One of the things I hate most about my chronic illnesses is that I know it causes other people pain and stress, I know its hard for people who love me to see me struggle, I know its stressful for them to have to help me with things that most people would be able to do for themselves. I would often down play how much I struggled, or push myself beyond my means to try to help someone with a difficult situation and it took me a long time to realise that I was actually harming both myself and them by putting myself last. I have learnt over time that sometimes I have to be a little bit selfish and take care of my own needs, both emotionally and physically, before I can be a good friend or confidant to others. I have learnt that even simple things, like putting my phone down by a certain time each night, keeping the do not disturb turned on during bad days, having messages from new people on my chronic illness account go to requests instead of straight to my inbox all help. I have learnt to say “no”. I have learnt to say ” I cant deal with this right now, so I will talk with you later” . All these things seem small, but they are ways of enforcing healthy boundaries and ensuring I rest when I need to, I eat when I need to and I limit the amount of stress on particularly difficult days. There are many ways in which you can prioritise your own needs, so whatever works for you is OK, don’t be afraid to put those boundaries in place and stick to them.

6 – Embrace the things that bring you joy, no matter how small

This may seem like an obvious one, but I think its something we could all use a reminder of now and again. When dealing with the constant pain and stress of chronic illnesses and disabilities, life can become an endless routine of medications, appointments, managing hydration and nutrition and endless phone calls. Being chronically ill really is a full time job, and it’s one we don’t get a break from. We cant clock off at 5 on a Friday and forget about it until 9 am Monday. We can’t hire a baby sitter or ask someone else to take over for a few hours. With this in mind, its important that we take any opportunity for even a tiny piece of joy, no matter what that is. Want a chocolate chip cookie? Then have one! Love reading? Take an hour a day and read whatever your heart desires. Love music? Listen to a song every morning before you get out of bed or while you’re doing your treatments. For me, I love being creative, I play the flute, I sketch and paint and I have just started to work on my first ever patchwork quilt. I try to make sure that the majority of days I get to do at least one thing related to one of these things, whether that’s listening to some flute music, getting my flute out and playing or just watching a 10 minute video on a water colour technique that I want to try one day. It helps me feel human, it reminds me that I deserve joy and happiness and it gives me at least a small part of my day that isn’t dedicated to self advocacy, medications or managing symptoms and that’s really powerful.

7 – It’s ok not to use unsolicited advice

This is one I struggled with a lot in the early days. Unsolicited advice is something that everyone with a chronic illness has come across in one way or another. It’s usually well meaning and often comes from people who actually think they are being helpful, so it can be hard to say no to. In some cases, ignoring unsolicited advice can even make us feel guilty, we know the person was just trying to help so we feel bad when we don’t do what they say. The truth is though that usually we have already received good advice from people who are actually qualified to give it – doctors and other patients with similar experiences. Advice from family and friends can of course be helpful if they truly understand our health needs and know something that we don’t or have experiences that allow them to see things in a similar way but when advice is being given without being asked for its a different story. If you aren’t asking for advice then the chances are you already know what you need to do, or you know that at this point there isn’t anything you can do to make the situation better. People often don’t like being told this, so even if you have explained that you’re doing all you can, many will still try and offer advice, and its totally OK to not take it, it’s even ok to tell the person that you don’t need advice right now, and would appreciate a listening ear or some practical help instead where appropriate.

8 – You will make mistakes when it comes to your health and that’s OK

No one is perfect. We all make mistakes sometimes, whether that’s at school, work or home, and health care is no different. It might be something like accidentally ingesting a food that you are allergic to even though you have taken all the precautions, or missing a dose of a medication or forgetting to go to an appointment. Things happen. We are not robots. I have been dealing with chronic illnesses and chronic pain for 19 years. I have had coeliac disease since I was 14. I have definitely forgotten to take a dose of meds or two in that time. I have also eaten food that contained gluten, I have even been served a food that contained gluten by a family member. I would never do these things on purpose, and each time a mistake happens I do everything in my power to learn from it and make sure that specific mistake is not repeated, but I don’t spend weeks or months berating myself for it either. I am honest with my family and my medical teams when something happens, and I do everything they advise to correct the mistake, but I don’t hold a grudge against myself or whoever caused the mistake. I acknowledge it, I take steps to prevent a repeat and I move on. No one can be 100% perfect 100% of the time and that’s OK.

9 – Its not your job to inspire people

Something I come across a lot online is the desire of able-bodied/ healthy people to be inspired by disabled people. People constantly tell me I’m amazing for simply existing and honestly its tiring. I don’t want to be put on a pedestal for simply getting out of bed and going to the shops, or for having a shower and getting dressed. A common one for me is being stared at and receiving sympathetic and knowing smiles when going about my day with my rollator or my wheelchair, this is especially true if I happen to have my oxygen on at the same time. People will often bring attention to the mobility aid, making jokes or comments related to it, even asking me “what’s wrong” or “why I need it”. All I want to do is go about my day without any extra fan fare or attention, I just want to exist in society like everyone else. I want to get to my doctors appointment without feeling like a tourist attraction or go to a cafe and have a cup of tea without it feeling like the event of the year. I know the majority of people are not trying to make me uncomfortable and are genuinely happy or curious to see someone they perceive as different, but I am just a 30 something year old woman that want’s to live my life and enjoy the small amount of freedom I still have. It is not my job to be inspiring or make other people feel better when I’m just trying to buy some milk.

10 – Quality of life is just as important as quantity

Having a long life is something many of us want and when diagnosed with serious illnesses it’s totally normal to worry about the impact that may have on the longevity of our lives, but there isn’t much importance placed on the quality of that life. When I was first diagnosed, the focus was mostly on avoiding emergencies such as a perforated bowel, keeping my body ticking over until we could get to my planned surgery and trying to avoid any life threatening complications. There was very little mention or focus on quality of life. Aside from some family members, no one really asked me about my pain levels or how they were impacting my ability to function, no one wanted to hear about the long sleepless nights spent wondering what would happen next, no one wanted to listen to me complain about how much of a chore eating had become, they didn’t want to hear about how horrible the steroids were making me feel. The doctors just wanted to keep me safe. The priority was trying to avoid serious complications and everything else was secondary. In the beginning this made sense, the doctors I was under at the time thought that once i had my surgery, i would be pain free and able to lead a normal life for at least a few years, so to them the pain was temporary and as long as I got through the surgery and out the other side things would be golden. What no one expected or prepared for was the idea that the surgery wouldn’t fix everything, the idea that the crohns would come back relatively quickly or that I would end up diagnosed with several other conditions. It took a long time to realise that I was going to be sick/in pain for the majority of my time. Once this realisation came, I realised that I would need ways to handle my symptoms at least enough to give me some sort of quality of life. One of my biggest and most hated symptoms is nausea, it always surprises people when I say that my anti sickness meds are the ones I would hate to be without the most, the nausea is all consuming, it creeps into every fibre of my being and makes it hard to do anything other than lay in bed all day, Getting it under control took a lot of trial and error, I take two powerful anti sickness medicines every day without fail, and I cannot miss them. Controlling my nausea means I can eat, drink, sleep, talk and spend time around other people without being constantly paranoid about loosing my lunch. The other big thing is of course pain control. I will likely never be pain free, but having decent pain relief has kept me out of hospital many times, it means i can manage flare ups at home, I can eat, I can do light exercise. I can even do fun things like go to the cinema or the occasional gig. Controlling the underlying illnesses may keep me alive, but controlling the symptoms allows me to live, and that is SO important and precious, and when it comes down to it, I would never be able to live without quality of life.

Gift ideas for chronic illness fighters

Gift giving can be tricky for anyone but when you’re buying for someone with a chronic illness it can be harder to know what they might find useful.

1 – Heat pads/ heated blanket

If the person you are buying for has any sort of pain linked to their condition or struggles with being cold, a heat pad or a heated blanket can be a really great way for them to ease some of the pain and protect themselves from the cold. Electric heat pads are even better because you don’t have to keep going to the microwave or boil the kettle to get heat, you just plug them in and off you go. Many of them have variable heat settings and safety cut offs to prevent over heating or burning.

2 – Comfy clothing

For many people with chronic illnesses, especially chronic pain or sensory issues, comfy clothing is such a blessing. This could be something small like some comfy/fluffy socks that don’t have cuffs or a cosy hoodie to wrap up warm with, anything that you’ve seen your loved one wearing that you could find a comfy version of. Clothing can actually be painful for some people with chronic illnesses and anything that makes it better is so appreciated, it’s also really comforting when you can just snuggle down in something comfortable and just relax.

3 – Fun mobility aids

If your loved one uses mobility aids then fun or luxury versions of those can be great gifts. I would always recommend asking before buying a mobility aid because preferences are so personal, but one way of doing it might be to take them shopping to get them a gift card for somewhere that sells mobility aids so they can choose what they think will work best for their needs.

4 – Skin care

Many chronic illnesses come hand in hand with chapped lips, itchy or irritated skin and dryness, once you have made sure your loved one doesn’t have any allergies, high quality and luxurious skin and lip care can be really nice as a gift. We get so busy taking care of our medical needs that we often forget to look after our other needs so getting something skin care related can encourage us to do other forms of self care and really look after ourselves.

5 – Cosy blankets

Similar to the comfy clothing, having a comfy blanket to snuggle up under when you’re feeling really unwell can be really comforting.

6 – Streaming service subscriptions/ gift cards

Being unwell a lot means lots of time in bed/on the couch with not very much to do. Having access to a good streaming service for movies/ tv shows can be really helpful. It helps to keep us occupied while promoting rest and relaxation. If your friend or loved one isn’t a bug movie lover then you could switch out a movie subscription for a music or audio book streaming service .

7 – Books

Another thing that comes with chronic illnesses is a lot of time waiting around in hospitals and doctors offices. If your friend or loved one is a book worm then a good book to dig into while they’re waiting around could be a great gift.

8 – Snacks

Easy to prepare and eat snacks that cater to any allergies your loved one may have are a great gift idea. One of the things I struggle with is having the energy to prepare food, usually by the time I have made my snack or meal, I don’t have any energy remaining to be able to actually enjoy eating. If I could have a never ending supply of easy to eat, low preparation snacks it would definitely encourage me to eat on those low motivation days.

9 – Fancy water cups/ bottles

Hydration is really important for everyone and many chronic illnesses actually make maintaining hydration more difficult. Many of us loose extra water due to symptoms such as vomiting or diarrhoea, or we deal with electrolyte imbalances due to the impact of our underlying conditions, so its really important we drink enough to keep us safe. Having an easy to grab and use water/drinks bottle to keep with us and keep topped up can really help with this, and who doesn’t love a swanky new drinks container?

10 – Chore coupons

For many with chronic illnesses basic chores become more difficult and sometimes even impossible. Chore coupons are a great way of offering help on the other persons terms, it allows them to choose the type of help they need on a particular day and they can ask for it in a non pressured way. It doesn’t have to be anything big, it could be something as simple as doing the dishes or walking the dog, or you could push the boat out and offer a deep clean if this is something you think they would both need and feel ok about. Our time is the most precious gift we can give someone and it will always be appreciated.

10 Things I wish everyone knew about life with chronic illnesses

There are many aspects of chronic illnesses that you will only truly understand if you actually deal with one yourself . This can make it difficult for those of us dealing with these illnesses to integrate into society and maintain jobs, social lives, intimate relationships and more. Here are 10 things I wish everyone knew about living with chronic illnesses.

1 – There’s no time off.

When you have a chronic illness its a 24/7 365 day job. There’s no putting in holiday leave, no baby sitters or task sharing and there are no allowances for holidays or special events. We have to deal with our illnesses where-ever we are, no matter what we’re doing or who we are with. Even at night, when the world is sound asleep we are often up late taking meds, managing pain and other symptoms, trying to maintain hydration, adjusting positions and keeping our temperature just right. It’s exhausting and its lonely, no matter how good your support system is it is impossible to fully communicate how difficult it is to live with these things 24/7. Burn out is common among people with long histories of chronic illnesses and its really not surprising when you think about it, so give us a little grace if we’re a little cranky or we slip with our household duties, we’re working a full job just existing.

2 – Doctors don’t know everything

So many times over the years I have heard “why didn’t you go to the doctor” or “you should get a different doctor, you should be better by now” or words to that effect. Here’s a ground breaking fact – doctor’s don’t know everything! That’s right! Doctors are humans just like the rest of us and it is impossible for them to have answers for every problem and every ailment. There is a lot about the human body that we still don’t understand yet which is complicated by the fact that they can’t ethically examine the human body while people are alive if there’s a chance it will cause harm. As a result, there are a lot of things doctors can’t cure, they can’t always just write a prescription and make everything better. The best doctors I have had are the ones that acknowledge this, they know they don’t have all the answers and they don’t make promises that they know they cannot keep, instead they will talk to me about the options we do have and why they think each option is good or bad. They make sure that I understand why they can’t make everything better, and work with me to ensure the best quality of life possible while trying to figure out a long term plan.

3 – Sleep doesn’t fix fatigue

We’ve all been tired, whether we’ve pulled an all nighter getting college work done, stayed up late chatting to a new beau or lost sleep to a loud neighbourhood party we all know what sleep depravation feels like. We also know that usually the answer is a good nap followed by a few really good night’s sleep. Fatigue is different, fatigue is feeling like the simplest tasks are 100 times more difficult, something as simple as going upstairs becomes a mammoth task, walking for 5 minutes feels like walking a marathon. For many people with chronic illnesses fatigue is a well known friend, just existing with a chronic illness burns more energy than existing in a healthy body, simple tasks take extra effort and we often have the double whammy of disrupted sleep due to medication or symptoms. For us, a nap or a few good nights sleep won’t help, we could sleep for a week straight and still wake up feeling exhausted. What can help is pacing, breaking tasks up into smaller, more manageable chunks, only doing a certain amount in a day, taking regular breaks and staying on top of food and drink. If you want to help someone with fatigue, taking some tasks off their plate may be a good way to go, you could offer to cook them a meal, take the rubbish out, watch their kids or even offer a relaxing activity such as a movie night so they get a chance to hang out and rest while feeling included. What really helps is asking what the person needs and doing it without judgement.

4 – Unsolicited advice isn’t helpful

Whenever someone is sick and suffering it is totally natural to want to help them, to want to fix things for them and make their lives easier. Any good person hates to see the suffering of anyone else, especially people they care about and this drives them to give anything they can, including advice. Unfortunately this advice isn’t always wanted and in some cases can be distressing and even dangerous. If someone has been dealing with a chronic illness for any length of time there is a good chance that they have already tried every reasonable step to help with both the underlying illness and the symptoms. Dealing with these illnesses is exhausting and isolating, so imagine what it’s like when everyone you talk to has an opinion on what they’re doing and how they should be managing things. If you really, really want to give advice, ask the person if they would like to hear your thoughts first, for example if you’ve heard of something that might help nausea, you could say “I saw a new way of dealing with nausea the other day, would you like to hear about it?”. If they say no, then listen! Don’t continue to push your advice if they don’t want it. Just as importantly, if they say that something won’t work for them or that they already know what to do, then please just believe them. They aren’t saying it to be difficult and it’s not that they don’t trust you or don’t want to get better, they just know their body and their situation better than you do and have a good idea of what will and wont help.

5 – Rejecting an offer of help isn’t personal

It’s absolutely natural to want to help someone who is struggling but sometimes there isn’t anything you can do that will actually help the situation. There are many reasons why someone may say no to an offer of help, they may already know that there isn’t actually anything that will help in that moment, for example they may already have all the help that they need, or they may need help that is of a more personal nature than they feel comfortable asking you for. Over the years I have had people react very negatively if I have turned down an offer of help and people take it extremely personally, but it’s never ever intended that way. If you really want to help, asking the person what they really need is a good start, if there’s nothing they need, then you could ask if there’s anything they *want* to do that they wouldn’t normally ask for like a fun trip or yummy food that isn’t just the basics. If this still isn’t needed/wanted at that time, you can let them know that if anything comes up then you will be willing to help even if time has passed.

6 – Not all illnesses/disabilities are visible

This is something I really wish more people would understand. There are many disabilities and illnesses that are not visible on the outside. For many people with chronic illnesses it’s impossible to tell just how sick they are from their appearance. Many times I have had people tell my I don’t look sick or even that I “look better” while I was actually at my sickest. Even during months of endless hospital stays, being unable to eat without being sick, constant pain and exhaustion I had people tell me how well I look. I have been judged so many times for sitting in a disabled seat on the bus and not getting up for someone older than me because people just assumed I was being lazy, they couldn’t see my immune system destroying my intestine or my joints feeling like they were on fire. Always remember that it’s impossible to truly know what is happening under the surface and someone may be fighting a battle that you know nothing about.

7 – Using a mobility aid does not mean you can ask me private medical information

In the last 6-7 years I have gone from using no mobility aids, to using a folding walking stick, to using crutches, a wheelchair and most recently a rollator. I currently alternate between the later three depending on how bad my symptoms are and what I am going to be doing. For some reason people see these and think it is appropriate to ask me why I am using them. I understand curiosity, and in some contexts I don’t mind answering questions, but when I am minding my own business waiting for the bus, or trying to pay for something in a shop, I would rather not be stared at and quizzed about my medical conditions. I am just trying to get to my appointments or get my shopping like everyone else, and
I would like to do it without being made to feel like some sort of spectacle.

8 – Having fun doesn’t mean we’re better

When you have chronic illnesses and you’re always in pain or feeling rotten, you learn to have fun regardless. Of course there are days where you have no choice but to stay in bed or crash on the sofa, but if we waited to feel well before doing fun things we would waste our whole lives. People with chronic illnesses become very good at having a good time even when feeling horrendous, we learn to pace ourselves, we learn to plan for days for events to allow us to enjoy them, we learn to clear our diaries for days or weeks before and after so we can recover. We also learn to find joy in the smallest things and in moments that most find insignificant. We can make memories sat on the sofa laughing about silly things, or at a music gig , or even in a hospital waiting room. We don’t take any chance at joy for granted.

9 – One good day / week/ month doesn’t mean we’re better

Many chronic illnesses and disabilities fluctuate, it’s quite common for people with a chronic condition to experience periods of less symptoms accompanied by periods of worsening symptoms known as a flare up. For many, the occasional good day/week/month is refreshing and a nice break, but it doesn’t mean we’re all better. For one thing, a good day for us is often still what most would consider bad, we are often still in pain or fatigued etc, and we still have to be careful about what we do so that we don’t make things worse for ourselves when a flare up does start. For another, we know that the good day won’t last forever, we know that the symptoms will be coming back just like before, so even if we get lucky and get a good stretch of time before the other shoe drops, we know that it WILL drop eventually and we have to be constantly prepared.

10 – Pity parties are allowed

We don’t want you to feel sorry for us or pity us, but we also don’t want to feel like we have to be brave and strong all the time. Being constantly sick sucks, it’s hard always being in pain and knowing there isn’t a way to stop it, it’s challenging being reliant on medications, devices and even other people to be able to live. It’s exhausting being on a never ending ride of meds, hospital appointments, phone calls and self advocacy. We are allowed to throw ourselves the occasional pity party and it’s not OK to shame us for it or make us feel like we’re weak or like we should be handling things differently. The key to this is that it’s occasional, and that it’s driven by us and not others. If it starts to be a regular thing and your loved one can’t seem to find any joy in life, it’s a good idea to just offer them some extra support and love. If it’s just occasional and they can still find joy and things to be happy about, then let them be, join in if they would like that, and pity party all night.

So that’s my 10. This is all from my own point of view and experiences of course so other people may feel differently. There are many more things I could add to this list, but these are the ones that come to mind most freely. If you’ve read this far I hope it’s got you thinking a little about life with chronic illnesses. If it’s resonated with you consider sharing it with a friend and think about it the next time you interact with a chronically sick loved one.

How do you do it?

” How do you do it?” is one of the most common questions I get asked from people who have just found out about the extent of my illnesses.

The honest answer is, I don’t really know. Chronic illnesses are weird like that, for a lot of people they just creep up on you, you wake up sick one day and don’t get better. Some people stay the same or have a long period of stability, some people get progressively worse, some people relapse and remit over time.

In my personal experience, my chronic illnesses have built up over time, at first there was only joint pain, then the coeliac and with that came a distinct lack of energy, then came the crohn’s with its nausea and stomach cramps, then I was officially diagnosed with arthritis, then I had my jaw surgery. then came the cluster headaches. I dealt with things as they came along and for a long time i tried to keep living my life as normally as possible, I kept going to school and then college, managing my pain any way I could until it just became impossible to do those things. When I look back over the last 19 years I genuinely don’t know how I have got to this point. So many things have happened, hundreds of tests, hospital stays, procedures, IVs, surgeries and injections. I have failed multiple medications and treatment plans and I have had constant debilitating pain in one part of my body or another through all of it.

When you stop and think about everything you are dealing with things it can be really overwhelming and there have definitely been times when I have thought I would stop functioning, where I couldn’t see how I was going to keep going for even another day, and then a new day comes, and I get up and brush myself off and go on with life. While you’re in the midst of the pain it can be difficult to see how much you’re actually going through, it’s almost impossible to take in every emotion, every bit of physical pain just merges together in an endless slurry. Its only when you look back with hindsight you can really see how much you’ve been through and for me those are the moments where I struggle to see how I am going to keep going.

The problem with chronic illnesses of course is that they never stop, so even when you stop and look back you’re still not seeing the full picture because it isn’t over yet. I think its because of this that I struggle to verbalise how I “do it” or really take in exactly what I have been dealing with. What I will say is that a lot of people think they would never be able to cope with a life like mine but the truth is when you get sick you aren’t given a choice, you have to fight if you want to keep living and that fight won’t suddenly stop. Most people would be amazed at what they could cope with if they really had to do it.

Generally you try to make the most of the things you can control, you try to forge a life for yourself the best that you can, you attempt to maintain relationships and surround yourself with people who love and support you. There is no secret to getting through or dealing with chronic illnesses, no secret to dealing with daily severe pain or coming to terms with knowing you won’t get better, but I promise you in the majority of cases you will find a way through. Putting one foot in front of the other is a good place to start. It’s all I’ve done for the past 19 years and it has got me this far. The one good thing I can say about living with chronic illnesses is it has taught me to be grateful for every day and every opportunity, because I don’t know when my last chance to do something will be. My health has been deteriorating steadily for a long time and I have had a few “lasts” that I didn’t know were coming, like my last 8 mile walk, my last meal in a restaurant without worrying about getting sick, my last pain free day, and I will have more “lasts” throughout my life, and although thats incredibly hard, it has taught me to enjoy every last second that I can.

Please don’t tell me it could be worse

Everyone has different ways of dealing with difficult things that happen to them, some people find it easier to remind themselves of all the good things that have, some try to focus on all of the things they have, some try to focus on people who “have it worse” and some have to deal with it head on.

Like many people with chronic illnesses, I get a lot of comments and advice about how best to deal with things, usually from people who dont know me and my full story. They usually mean well , but can be inadvertently hurtful or insensitive with their advice.

After spending the last 19 years of my life in one form of pain or another I have had more than enough chance to work out what helps me and what doesn’t. I have a history of bottling things up because I dot want to be seen as complaining or because I thought I shouldn’t say anything because “it wasn’t that bad compared to others”. It has taken me a long time and a lot of hard work to get to a place where I can now be more open when I am struggling and I have even started an instagram account where I share some of the ups and downs of dealing with chronic pain and chronic illnesses. Having said that there are still details that I choose to keep private, I don’t share much about what has happened to me in the past and I keep most of my personal life like my relationship with family and friends off account .

The last few years have been particularly tough, the pandemic had a huge impact on my life and continues to do so even now, I have also suffered two very close bereavements and my health has continued to deteriorate. There has been a big emotional toll as I have tried to learn to live in a new normal, in a world where I could still catch Covid 19 and end up very seriously ill. There have been a few occasions where I have attempted to share just how tough I have been finding things and instead of empathy and understanding I have been met with people telling me just how much worse they think I could have it.

Now, I understand that for some people this is a helpful way to look at things, and it brings things into perspective but for me it feels very invalidating. Technically things could always be worse for almost everyone, even those in the most heart breaking situations could theoretically have it better than someone else. Suffering is not a competition, it is relative. If there are two people in A&E with broken legs and one of them has also broken an arm, it doesn’t mean the person with “only” broken legs is suffering any less.

I am the type of person who doesn’t like to burden others with my problems, I will often do everything possible to carry on going and not show how much I’m really struggling, especially emotionally. On rare occasions, and in rare spaces (like my instagram) that I feel safe enough to share even a fraction of how I really feel, I really do not need to be told that it could be worse. I have gone though a massive amount in my life, including harmful relationships but these last few years have been the hardest of my life and I rally don’t want to loose one of the only places I feel able to be honest about how I am feeling.

Differences between IBD and IBS

Both IBD and IBS can be distressing and difficult to live with, they can both cause lots of pain, discomfort and difficulty with day to day life, but there are some significant differences and its important to know what they might be so that proper diagnosis can be sort.

Firstly I want to say that anyone facing symptoms that they aren’t sure about, or anyone facing symptoms that are new or more severe than what’s considered normal for them should seek medical attention, I also want to say that any medical condition is hard to deal with, this post is not meant to play one condition against the other, my hope is to provide information that may be helpful when seeking a diagnosis, and to raise awareness of both conditions.

Symptoms

One of the easiest ways to differentiate the two conditions is to look at the potential symptoms.

IBD

Symptoms of IBD can include

Blood in the stool
Diarrhoea
Abdominal pain
Nausea
Vomiting
Constipation
Joint pain
Eye inflammation
Nutritional deficiencies
Increased inflammatory markers in blood and/or stool
Fatigue
Weight loss
Mouth ulcers
Bloating
Passing mucus
Sudden and uncontrollable bowel movements

IBS

Symptoms of IBs can include

Stomach pain which is often worse after eating but better after going to the bathroom
Bloating
Dirrhoea
Constipation
Flatulance
Passing mucus
Tiredness and lack of energy
Feeling sick
Trouble peeing like needing to pee often or feeling like you cannot empty your bladder properly
Incontinence

Blood in the stool, fever , anemia and unexplained weight loss are not symptoms of IBS, if you have these symptoms its really important that you talk to your doctor, even if you have a previous diagnosis of IBS. You also need to make sure that you tell your doctor if you have a family history of any bowel diseases or cancer, including coeliac disease and inflammatory bowel disease.

Testing

Regardless of what you think you might be suffering from, its important to see a doctor, I understand that some of these symptoms may be embarrassing for you, but it’s important to talk about them, and the doctors wont judge you, they will be used to these conversations, they won’t be surprised and they will want to help. If a doctor ever makes you feel uncomfortable, or you feel like they aren’t taking you seriously please ask to see someone else, it’s so important that you are cared for properly.

When you see a doctor, blood tests and stool samples should be taken to look for inflammation, infection and to look for blood in the stool (poo). It is also important that you have tests to look for any nutrient deficiencies, especially if you have been having trouble eating or have been loosing weight.

If these tests show there might be something that needs further treatment, you should be referred to a gastroenterologist who will organise imaging such as an MRI and possibly a colonoscopy.

Key differences

A key difference between IBS and IBD is how they impact the body internally. IBS is what’s known as a functional disorder, which means there’s a problem with the way the gut functions and this causes the symptoms, whereas in IBD, the immune system attacks healthy cells in the digestive tract, causing inflammation, scarring and long term damage.

While IBS is undoubtedly extremely difficult to live with IBS, it. Does not damage the digestive tract, it does not cause an increase in cancer risks or life threatening complications. However, if you are suffering with IBS you still deserve good care from medical services, so don’t let them turn you away

IBD causes inflammation which can do permanent damage to the digestive tract. Ulcerative colitis damages the colon and the rectum while crohns can damage any part of the digestive tract. There are also extra intestinal manifestations such as osteoporosis, eye inflammation, joint pain and there is an increased risk of some types of cancer. Left untreated, or if treatments fail, IBD can have fatal complications including a perforated bowel or a fatal infection due to the immune suppression caused by some of the treatments needed to control the disease.

It is of course possible to suffer from IBD and IBS at the same time, and there are lots of other digestive illnesses, so , whatever diagnosis you are given, please do keep fighting if you feel something isn’t right, and remember no matter what you’re told IBS does not cause inflammation, bleeding or nutrient deficiencies so if you are suffering with any of these you need to pursue a different diagnosis. It can be hard to advocate for yourself with people who you think should know more than you, but it is super important and could save your life.

World IBD Day 2024

Sunday 19 May 2024 is world IBD day,

To mark this important day I thought I would talk about IBD, the main types, symptoms, diagnosis and treatments.

IBD stands for Inflammatory Bowel Disease, it is a group of conditions that cause inflammation and damage to the digestive system. There are a few different types of IBD with the main two being Crohn’s disease and Ulcerative Colitis . The exact cause of Crohn’s disease is unknown, but it is thought that there is an auto-immune or auto-inflammatory component. One train of thought is that the immune system reacts to something in the gut – possibly bacteria- and starts to attack it, causing damage, research into the causes and mechanisms of IBD is currently on going and new theories are coming out all the time.

Crohns disease

Crohn’s disease can impact anywhere in the digestive tract from the mouth to the anus, it causes inflammation, ulceration, scarring and damage to all layers of the bowel, and it can cause complications such as fistulas which are abnormal tracts between one part of the body and another, such as between the bowel wall and the abdominal wall. In Crohn’s disease the damage can be sporadic, there can be patches of inflammation and patches of healthy tissue, which means that if you looked at only a small section of tissue, you might miss the disease and think it is not present.

Ulcerative colitis

Ulcerative Colitis (UC) impacts the large intestine (known as the Colon) and the rectum. Small ulcers develop on the lining of the colon which can bleed and produce pus. In ulcerative colitis the inflammation is continuous, and it only affects the inner most lining of the colon.

Indeterminate colitis

In about 10% of people with IBD, features of both UC and Crohn’s are present, making it impossible to distinguish between the two types of IBD, in these patients a diagnosis of inderminate colitis is made.

Symptoms

Symptoms vary from person to person and even between different flare ups in the same person. The most well known and more common symptoms include

Stomach pain
Nausea
Vomiting
Weight loss or weight gain
Bloating
Diarrhoea
Nutrient deficiencies
Bleeding from the gastrointestinal tract

While these symptoms may seem obvious for a digestive disease, there are other symptoms that may seem less obvious and these include

Joint pain
Fatigue
Eye inflammation
Mouth ulcers
Osteoporosis
Skin issues

Diagnosis

Because the symptoms mimic so many other conditions IBD can be hard to diagnose, unfortunately it often takes people a few years to get a proper diagnosis . Getting a diagnosis usually starts with speaking to a GP and getting some basic blood tests and a stool sample should be taken to look for blood, inflammation and signs of infection, there may also be a physical examination of your stomach to check for any other signs of issues,

After this, if the GP deems it appropriate, they will refer you to a gastroenterologist which is a specialist in the digestive system who may order further testing including an MRI and/or a colonoscopy or endoscopy. The best way to get a firm diagnosis is to get a biopsy of the intestine which can be done during a colonoscopy. The biopsy can help determine if you have Crohn’s or UC or if there is something else going on. Sometimes these tests will come back clear despite continuing symptoms. If this is the case, you can ask for other testing such as a barium meal follow through or a white cell scan which is a specialist scan where the white blood cells are tagged with radiation and a special scanner is used to follow them. If the white cells are seen to be concentrating in a specific area it can indicate inflammation which can be used to help with diagnosis.

Whatever tests you have, don’t give up if you are still having symptoms and feeling unwell, it’s important to stand up for yourself and not to let anyone put you off, getting a diagnosis is important for any illness, and its not ok for anyone to be left suffering.

Treatments

There is no cure for IBD, so treatment aims to control the disease and help to improve quality of life by getting symptoms under control.

Steroids

Corticosteroids like prednisolone or budesonide are used during the acute “flare” phase of the illness. A flare up is when the disease is active and causing more symptoms than the day to day baseline and steroids control these flare ups by reducing the inflammation in the digestive tract. Although they are usually very helpful and can get symptoms under control very quickly, steroids are not a long term option as they come with some quite significant risks including bone thinning, mood disturbances and the possibility of steroid dependancy.

Liquid diets

Liquid diets can be used at any age but they are most commonly used in children to give the gut a chance to rest and heal, they can also be used to try to help someone gain weight and nutrition if they have become malnourished as a result of their illness. Liquid diets use a very special form of formula food, which can be partly or fully predigested and may be highly calorific. They are tough to deal with, but they are a very low risk way of treating the inflammation and pain associated with IBD.

5 ASAs ( aminosalicylates)

These drugs have an anti-inflammatory component and they are chemically similar to aspirin, they dampen down the inflammatory process and allow the damaged tissue to heal. They are generally very safe drugs and they are often used as a first line treatment, especially in cases of IBD that aren’t very advanced or severe. The downside is they have limited effectiveness, so they aren’t appropriate for people with advanced or severe disease.

Immune suppressants

Immune suppressants work by calming down the immune system in the hope of stopping the damage to the digestive tract. The downside to immune suppressants is that they leave you more prone to infection and can have some serious side effects including liver problems, it’s important to have regular blood tests before and during treatment.

Biologics

Biologics are medications that work on the immune system and modulate it. Different Biologics work on different parts of the immune system, infliximab and adalimumab for example are both anti-tnf medications. Biologics block the part of the immune system that they are targeted at, with the aim of stopping any further inflammation from occurring. Like immune suppressants, Biologics come with a higher risk of catching infections and difficulty fighting them, they can also come with a higher risk of some types of cancer and they can lead to issues with organs such as the liver. Most Biologics are delivered by infusions or injections, the injections are usually self administered at home by the patient.

Surgery

Sometimes medication isn’t enough to stop the IBD from spreading or causing complications like abscesses and surgery can become necessary. There are a few types of surgeries that may be performed with IBD including bowel resections where a part of the bowel is removed and the healthy ends are joined together, stoma surgery where a part of the bowel is removed and the end is pulled through an opening in the abdomen, abscess lancing and removal and fistula repair surgery.

Worst case scenario

Although thankfully quite rare, people can die or be left with serious life long impacts from IBD and its complications . People with Crohn’s disease may experience a perforated bowel, which is a medical emergency or there may be complications related to surgery done to treat the IBD. People with IBD are more at risk of cancer, and some of the treatments also increase the risk of some cancers such as skin cancers, many of the treatments also reduce the function of the immune system which means patients are more susceptible to infections and may have more difficulty fighting off viruses like Covid and the flu.

This is why we need research for a cure and kinder more reliable treatments. Current treatments are much better than we had even 10 -20 years ago, but they don’t help everyone and they do have the potential to fail, and they all have potentially serious side effects. If you would like to help, just sharing information about IBD can be really helpful, the more people who know about IBD and its signs and symptoms, the better chance we have of getting people diagnosed early and stopping the worst of the damage. Increasing awareness will also increase funding as people will be more aware of the need to fundraise, and doctors becoming more aware will mean people are treated earlier and more efficiently.

Diagnosis story – Crohn’s disease

Crohns disease is a type of Inflammatory Bowel Disease (IBD) which a can affect anywhere in the digestive system. Common symptoms include stomach pain, nausea, vomiting, weight loss, bleeding from the bowel, loose stools and extreme fatigue. These symptoms are also common in many other diseases and this means that people with IBD often face months or even years of symptoms, testing and misdiagnoses before finally being diagnosed with IBD. I hope that by sharing my diagnosis story I can help raise awareness and hope during the diagnosis journey.

Part one – First symptoms and initial investigations.

The first indication that something wasn’t quite right came in the form of mild to moderate abdominal pain. At the time I was already under a paediatric gastroenterologist for coeliac disease so we told them about my symptoms and we did some basic testing. We started with some blood tests and moved on to x-rays, an ultra-sound and a barium follow through where I swallowed a barium drink and multiple X-rays were taken as the barium went through my digestive tract. We were told there was nothing significant on the tests but that we should closely monitor my weight and pain levels to make sure I didn’t deteriorate. We later found out that there were slight changes on the barium follow that could have indicated crohn’s but because of the newly diagnosed coeliac no one really thought much of it. We were told that the symptoms were possibly from my body recovering from the damage related to the coeliac disease and the big change in my diet.

Part two – watching, waiting, anticipating

After the initial tests were inconclusive, we decided that a watch and wait as my consultant didn’t want to put me through any more invasive testing as he felt I had already been through enough. Over the years the pain never really went away, and I began to slowly loose weight. My paeds consultant was concerned about the weight loss as I was already underweight for my height and it was beginning to become dangerous. Unfortunately at this point I aged out of paediatric care and had to be moved to the adult department and a new consultant. My paeds consultant had written to the adult gastro stating his concerns and advising close monitoring but unfortunately this was ignored. It took several strongly worded letters for me to finally be seen in clinic, and my concerns were totally dismissed because my blood tests were “ok”. I was told that my symptoms were possibly “functional” or that maybe my coeliac wasn’t being properly controlled and dismissed.

Part three – Begging for tests and worsening symptoms

Around 4-5 months after my 19th birthday my pain began to get significantly worse and was having major impacts on my day to day life. I was also continuing to loose weight despite eating as much as I could. At this point I knew something needed to change so I insisted on an appointment with my consultant and essentially begged him to do more testing. I eventually managed to convince him to organise an MRI scan. The scan took place in early August and I was told I would get the results within four weeks. Four weeks came and went but there was no sign of the results so I assumed there wasn’t anything important on the scan and tried to carry on with life.

Part four – Hospital trips and final diagnosis

After receiving no update about the MRI scan for 6 weeks I went off to Uni thinking it must have been OK. We don’t know if it was the stress of moving to a new city, starting a nursing course and being away from my family for the first real time or if it was just a coincidence but this is when things really went downhill. I lost a large amount of weight in a very short amount of time, my stomach pain became unbearable and I was struggling to eat or even drink enough. I was suffering severe nausea and vomiting and couldn’t even keep water in. At this point I decided I needed real medical help and went to the A&E at the nearby hospital where I was kept over night. This was the first of three admissions where they gave me pain relief and re-hydrated me. During the third admission they were discussing exploratory surgery to try and find out what was happening, but the consultant who came in the next day decided that this wasn’t necessary. Instead they diagnosed me with a ruptured ovarian cyst and instructed me to take a week off uni and go home with my parents to rest and be looked after.

While this was unfolding, I decided to try and contact my gastro consultant back in Wales to see if he could tell me if anything came up on the MRI scan. When I eventually got hold of him and told him what was happening, he told me that the MRI had shown narrowing in the bowel indicative of Crohn’s disease. He told me I would need further testing to make a definitive diagnosis. In November 2012 I had a colonoscopy with biopsies which found a narrowing called a stricture as well as active inflammation in the form of ulceration and redness. This confirmed the diagnosis of inflammatory bowel disease and because of the location (end of the small bowel) it was decided that I did indeed have Crohn’s disease.