disability – 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.

Why sentences that start with “at least” are generally unhelpful

We’ve all been there, someone is having a difficult time or they tell you about something hard in their lives and you really want to comfort them. It can be hard to know what to say when someone is going through a hard time, but sentences that start with “at least” are often the opposite of comforting apart from in a few very specific contexts.

As someone who has been dealing with chronic illnesses and pain for a long time and someone who has been very open with my journey since adulthood, I have heard a lot of “at least”. They have included

At least its not “insert illness perceived to be worse”
At least you have a partner
At least you have money (I don’t but that’s not the point)
At least you get to stay home all the time
At least you don’t have to work
At least you are young
At least you can do X activity

A lot of the time people mean well when they say these things, but sometimes people genuinely think you’re lucky because you don’t “have” to work and they do, or they think that your condition isn’t as bad as theirs, or that there are other conditions worse than what you have.

I am going to try to debunk some of these and explain why even if they were true, they still wouldn’t be helpful

At least its not “insert illness perceived to be worse”

There are a few reasons this isn’t a great thing to say, for a start its really dismissive, illness, pain and suffering are all relative, someone could be having the worst pain of their lives, it doesn’t matter if you think you have been through worse, if its the hardest thing they have been through, then its the hardest thing for them and that is valid. Even if they have been through worse in the past, they are allowed to find “easier” things just as tough to deal with.

Secondly, illnesses and suffering isn’t a competition, everyone is allowed to struggle , everyone has their own battles and they are entitled to support, no matter what other people are dealing with.

Thirdly, diagnosis alone does not dictate how much pain someone is in or how sick they are, or what other circumstances they have in their lives that could make things difficult. There are people out there with diagnoses that are perceived to be “worse” than mine who are actually much healthier overall and have a better quality of life. I also know of people who have diagnoses which are perceived to be less serious than mine who happen to be much sicker than me. The point is, the name of the illness alone does not tell us how sick someone is. Regardless, diagnosis does not dictate how much someone is going to suffer, it doesn’t tell people how much pain you are in, how much you can eat, how much medication you need to function, how difficult things are in their home lives, how difficult accessing care is or anything else that could impact their situation.

At least you have a partner

This is something I get a lot, usually from healthy people who just happen to be single. Don’t get me wrong, I absolutely love my fiance and I am very blessed to have someone in my life who loves me and who actually means the vows “In sickness and in health”.

However, the people who say this to me know nothing about my relationship or if its healthy or not, they just think I am lucky to be in a relationship and some of them even behave as if being in a relationship somehow makes being sick OK or not as life changing.

I am very, very blessed that I have someone who is supportive, kind and compassionate, but, maintaining a relationship when you’re really sick isn’t easy. Relationships in general need a lot of patience, understanding and hard work from both sides. When one of you is severely unwell, you both have to work even harder to keep communication open, to not get ratty with each other when you’re both running on no sleep. It is hard for me sometimes not to get short tempered when my pain is through the roof and I have not slept more than an hour or two for weeks at a time. It’s also very hard for my partner, he has to always be in reach of his phone incase I have an emergency, he keeps a medication list on his phone incase I ever end up in hospital unconscious and he needs to communicate it to doctors, and there are things other couples do every day that we are just unable to do together because of my limitations. The likelihood is that my health will get worse as i get older, and I am already well on my way to getting osteoporosis. He will watch me getting sicker the older we get, loosing more and more function and independence and that is going to be incredibly difficult for him.

To be brutally honest I also find some things more difficult, as when i am thinking about my illnesses I also have to think about him, and our future as a couple, rather than just about my illnesses/me. I have no problem with this at all, I adore my fiance and I would walk through fire pits to be with him. The compromises and thought needed to maintain the relationship are absolutely worth it and I will never begrudge that. I just think it’s something people underestimate, being in a relationship is amazing most of the time, but it is a lot of hard work.

At least you have money

This comment usually comes from people who live in less advantaged countries, who see that I am from the UK and automatically assume that I have lots of money and that this can fix everything.

There are two major things here – firstly I actually have no money, without my mother I would be homeless, I have no income and no way of getting one. Government help for people who are disabled and/or chronically unwell is very hard to access, and it’s very little money. I have access to one benefit, and it’s barely enough to buy the extra things that come with my conditions – gluten free food, skin care for my eczema, a comfortable pair of crutches, splints and other things that generally make my life more comfortable.

Secondly, even people who do have money can’t buy health, you might be able to buy a nicer wheelchair or a more accessible home, you might be able to pay for carers or a big car and a driver that can take you anywhere, but you can’t buy a cure that doesn’t exist yet, you can’t buy pain relief that takes away all pain, you can’t cure your paralysis with money or make things magically accessible in the outside world. Having money may make some things easier, like making sure you get enough food, making sure you have heating and food, but it doesn’t actually make being sick better or easier, and its not ok to tell someone with a serious illness that they should just be glad they have more money than you.

At least you get to stay home all the time / at least you don’t have to work

i have tied these together because they often go hand in hand. People who work/go to school/go out a lot often dream of being bale to just sit around doing nothing. This is because when you have a busy life and are always on the go, having a few days of just doing what you want, spending the day on the sofa or watching movies or whatever it may be, and people think that if you don’t work because of illnesses it’s the same thing. Unfortunately it really isn’t. When you have time off from school or work and you’re feeling well, you can do anything you want provided it is in your budget, you can have fun, you can see your friends and family, and if you have a day in bed or on the sofa its because you choose to. When you are chronically ill and sick enough to be unable to work, it also means you are often unable to do most of the things other people take for granted, people who are chronically unwell often get tired much easier, we are often in pain, some of us find eating and drinking harder and the majority have lots of health related admin and tasks to do. I personally have to make frequent phone calls to medical and admin staff, monitor and administer multiple different types of medications including injections, maintain my hydration the best I can and try to eat enough to keep my weight at a safe amount.

Then there’s the issue of finance, because I can’t work I have very little money, the money I do have goes on essentials that are mainly health related, and I can’t afford to do lots of fun activities. I also don’t have access to a car, and no one who is close enough to me to care has a car big enough for my wheelchair, so I am restricted to activities that I can get to by bus. The buses here only go to 2 locations and are every hour, so they are really inaccessible to someone with difficulty standing or walking for long periods as if you miss one you have an hour wait for the next. I am also at very high risk for infections due to the medications that keep me alive, so that makes it really dangerous for me to do certain activities. For the past 4 years my home has been the only safe place for me, but at times it has been more of a prison as I am quite literally trapped here.

At least you are young

I have to be honest, I don’t really know what people are getting at with this one, I can only think that they mean I am young and have the rest of my life to live? But in reality, being young does not make my situation any easier. I got sick at a really young age, I have been unable to have any sort of career, my social life is non existent, my friends have all disappeared and stopped caring, and I have no memory of a life without pain. I literally don’t know what it is like not to be in pain. i also know that even if my underlying conditions were all eventually cured, irreversible damage has been done to my body, I will never be totally well, and that’s hard to deal with when you’re only in your 20s and 30s. It also means that people tend not to believe me when I try to tell them what I have been through, people think i am too young to be as sick as I am or to have experienced everything that I have, even doctors don’t always take me seriously and many think that I don’t understand what’s happening in my own body.

At least you can do X activity

This is another one, people think that because I can do certain activities that I am fine. For example, I play the flute, I love it, its one of my favourite things, so people think that means my illnesses don’t bother me, or that I shouldn’t be upset about the things I can’t do.

I don’t like to focus on it, but the hard truth is that the list of things I can’t do is a lot, lot longer than the list of things that I can do, and the list of things I can’t do is getting longer all the time. Even the things I can do are dependent on how i feel that day, that hour, that minute, some days I can’t do anything other than curl up on the sofa and try to stay hydrated. There is also an element of just stubbornness a lot of the time, sometimes I have to prioritise my mental well being and I push myself physically to something that will make me happy. This doesn’t mean I am not struggling or not in pain and it’s a really fine balance between the two things.

These are just a few of the examples that I hear on a regular basis, there are many more ways that this kind of comment can be made, and while often well meaning, many of them can feel dismissive and as though the person making them doesn’t really understand.

Next time you are talking to someone who is expressing how they feel or talking about something they are going through, listen and be compassionate, and think very carefully before starting a sentence with “At least”.

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.

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.

I don’t believe I need to be “healed”.. here’s why.

When you have been dealing with chronic illnesses for any length of time you inevitably come across people who think you need to be healed/cured/fixed in some way. This can come from all types of people, there are people who think that if you’re a good Muslim, Christian, Jew, Hindu etc then you will constantly be praying for healing. There are people who think that you can’t possibly be OK with being sick or disabled and think that you should be constantly seeking cures, trying everything no matter how extreme or how little benefit it will actually have. Whenever I am faced with this I give my honest response – I don’t believe I need to be healed, and I’m going to attempt to explain why in this post.

Before I get to the explanation I just want to say that if you’re someone that really wants to be healed, that needs to hold on to the hope of healing to cope or to get through, or someone that believes in trying every remedy possible to try and make things better then that’s absolutely ok. I’m not judging you and I respect you. All I am asking is that you give people like me the same respect and accept that we have accepted our situations.

One of the hardest things about dealing with a diagnosis of a chronic illness is learning to accept that you will be living with it for the rest of your life. It can take months or even years to stop hoping you’ll wake up one day and it will all have disappeared. It often takes a lot of processing and hard work to finally be ok with yourself as a disabled or chronically ill person. I have been in some form of pain since I was around 12 years old. I have a long list of diagnoses and each one adds another layer of things I have to learn to live with. Constantly being told by society that I need to be fixed or healed makes that acceptance so much harder as it can make it feel like you’re not good enough as you are, or that you should somehow be making more effort to get better, and you are failing if you don’t.

For me, accepting that my illnesses are permanent and that I am not going to suddenly get better has actually helped me to enjoy my life in the here and now instead of putting things off. If you’re constantly waiting to get better you can end up putting off experiences and relationships because you think you’ll have chance when you’re better and that those experiences will be more valuable as a healthy person. I can say with certainty that having chronic illnesses makes so many of my experiences so much richer. I have learnt to make the most of every moment that I get. My illnesses teach me everyday to make memories from the simplest moments and I think that as I go through life they will continue to teach me more, so while I don’t want to be in pain and of course its hard, I wouldn’t ever give up the perspective having chronic illnesses have given me.

In addition to all of this, I believe that having a diverse population with a verity of experiences, abilities, needs and perspectives is good for society. Change happens when people from all walks of life are being represented and heard, without disabled people we would loose a huge range of experiences and thought processes. There are many inventions that wouldn’t exist without disabled people. Typewriters we originally designed by an Italian inventor who noticed that his friend was unable to hand-write letters because of her blindness. In 1608, Pellegrino Turri developed the first ever type-writer with metal arms and raised characters which allowed his blind friend to write. The inventor also invented carbon paper as a way to provide ink for the type writer. Other inventions originally developed for disabled people include Electric Toothbrushes, kitchen tools such as OXO good grips, speech to text recognition apps, fidget spinners, dropped curbs, bendy straws and audio books. This list is no where near exhaustive but provides good examples of products inspired by disabilities that have become integral parts of many peoples lives. Without the difficulties that come with disabilities we wouldn’t be driven to find solutions which would likely result in a vast decrease in innovation.

I also believe that having a diverse range of experiences in society helps to increase empathy and feelings of community which is really important for those wishing to experience and spread Gods love. It also takes a huge amount of faith to continue believing in God and his love while experiencing chronic and incurable illnesses, this type of faith is unending and cannot be rocked, meaning that those with chronic illnesses are a very valuable example of what faith can really do.

Things I am grateful for

When dealing with the day to day grind of chronic illnesses and disability its easy to become lost in how hard things are and loose sight of the good things. To try and balance this I make a real effort to remind myself of the things that I am grateful for on a regular basis.

Now, I’m not saying these things totally erase the hurt caused by living with chronic illnesses and their are definitely days where its really hard to see the good in life, but when I am able to step back and remember the things that make life better it really does help.

A loving and caring fiancé who accepts me as I am

The Image shows Nicola and her fiancé sat close together and smiling. Nicola has long brown hair with a fringe covering her forehead. She has blue eyes and is wearing pale red lipstick. She has a black and grey checked shirt dress. Gareth has dark brown hair and blue eyes, he is wearing glasses with a black frame. He is wearing a blue, brown, orange and white checked shirt with dark blue jeans. — Me and My fiancé

Being in a relationship while dealing with chronic illnesses can bring many challenges, many relationships end prematurely because of the pressure of dealing with the constant health challenges. I myself have had bad relationships as a young woman where my then boyfriend was unable to deal with the realities of my needs, so I know how difficult it can be. My fiancé now is a really loving, caring and empathetic person who makes my life better in every way. We face the obstacles together and we have found many ways of making memories while trapped in a hospital bed or sitting up talking in the middle of the night. I know that its not easy for him to see me in pain and unwell but I know he loves me and is willing to take the bad with the good.

Parents who support me

I know that a lot of parents will stop supporting their children when they become adults and expect them to deal with their problems alone. I am very grateful to still live with my parents and have a safe, warm and comfortable place to live. They have made a lot of adjustments and changes to meet my ever changing needs despite the burden that it places on them. The support and love they have given me throughout my life has made me the independent and confident person that I am now and I will never stop being grateful for that.

The NHS

For those outside the UK who may not know the NHS is the UKs national health service, it is free at the point of use and it is available to everyone no matter their background, income, living situation or what condition they have. In wales we have the added bonus of free prescriptions, so any medication that is prescribed by a medical professional is provided free of charge. This is actually life saving for people like me, without free prescriptions I would genuinely struggle to afford my medication including my asthma inhalers and medication for my cluster headaches. Thanks to the NHS I can go to A&E whenever I feel the need to without worrying about any cost implications or concerns about affording care. If we didn’t have the NHS I would probably be bankrupt and unable to afford anything other than a couple of medicines each month and probably no access to doctors or hospitals due to my inability to work.

Access to good pain relief.

While I know that good pain relief should be a right and not a luxury I am acutely aware of how blessed I am to have access to good pain relief. While no amount of pain relief will eradicate the type of pain associated with chronic illnesses, decent pain control can allow a chronic illness fighter to achieve a reasonable quality of life by making pain more bearable. Because of my pain relief I can do some basic tasks for myself such as washing my hair, looking after my guinea pigs, cooking a basic meal and going to doctors appointments. There are still days where these things aren’t achievable, but without pain relief I wouldn’t be able to do any of it. Without pain relief I would definitely be housebound and likely bed bound much of the time. I will always be grateful for compassionate doctors who care about my quality of life enough to issue pain relief, and I will continue to advocate for all chronic illness patients to receive the same level of care.

My Flute

My flute has been an absolute joy these past two and a half weeks and its a really good distraction from the daily stresses of dealing with constant health admin and chronic pain. Music has given me a way to express feelings and emotions that have been hidden away for a really long time. When its just me and my flute the pain disappears for a while and my soul is set free. It gives me a focus and an outlet in a way nothing else really can.

My mobility aids

When I first started to have difficulty walking I was extremely reluctant to use any mobility aids or anything that would identify me as disabled. I wasn’t ashamed of my disabilities but I was worried that using an aid would identify me as vulnerable and make me a target for judgement or mistreatment. Eventually it got to the point where the pain was just too much and it was n longer safe to keep going without a walking aid. i started small with a folding walking stick that I could put in my bag and only use on the worst days, then i moved onto crutches and finally got a wheelchair when it was clear the pain was beyond control and I needed help to make the world accessible to me. Despite my initial reservations I am now proud to be seen with my mobility aids. I no longer worry about what other people think or if they think I’m faking. My crutches and my wheelchair are extensions of my legs. They allow me to go out into the world, they stop my home from being a prison and they make me feel safe. I know that if I’m in my wheelchair and I get a cluster headache its ok, I’m totally safe. I know that if I have my crutches I can walk a short distance safely without falling or damaging my hip even further.

My Faith

I don’t talk very much about my faith because its very personal to me and I never want anyone to feel like i am preaching at them or trying to convert them, and also because I know that a lot of what I believe doesn’t align with many who call themselves religious. Maintaining faith while dealing with chronic illnesses is challenging, I get told all the time that if I pray hard enough or I’m a good enough person then God will heal me. I get told that I just have to ‘want to be healed’. This is not what I believe. I believe that we are all valuable, that we are all special and important and that we are all perfect in Gods image and that this includes disabled and chronically unwell people. I believe that I am the way I am supposed to be. Having chronic illnesses is extremely difficult, but there are so many things in my life that I probably wouldn’t have if I never got sick. I may not have met my fiancé or talked to him the way I did, I may not have had time to rediscover my love for the flute and the joy that brings me and in all honesty I may not have such a strong faith. There are moments in my journey where I knew God was with me, where I knew miracles were happening, where I felt peace in the midst of chaos and I am so grateful for all of those. I believe God has the power to heal if chosen, but I also believe that I don’t need to be healed because I’m not broken.

My Life

There are so many more things I could list here but I over all I am just so grateful for my life. Life with chronic illnesses and constant pain is really difficult and there is no getting away from that, but the flip side is that you learn to see the joy in the tiniest moments. The cups of coffee first thing in the morning, walking down a street hand in hand, sitting on the beach eating chips or sitting on the sofa laughing at stupid TV shows. I know what it’s like to worry that life may be shorter than you imagined and that really makes me grateful for each day.

Coping with needing a mobility aid as a young woman

When I first started dealing with chronic illnesses, there were no outer signs of anything being different about me. Most of my pain was in my upper joints and abdomen and apart from the occasional wrist brace, there was no sign of the war happening under my skin.

As my illnesses started to progress and my mobility deteriorated I began finding it difficult performing day to day tasks without help. To start with, I used a folding walking stick which could be put away in a bag when I didn’t need it. Making the decision to use a walking stick was difficult. I was still in my 20s, and thought walking sticks were for older people. I left it until I physically couldn’t manage any more and then gave in and bought the nicest looking one I could. It was bright blue with silver stripes and for a while it actually helped. It made me feel more stable and despite the stares from strangers the colours made it feel more like a fun accessory. After a while it became evident that it wasn’t a practical choice though, the handle was far too hard and was causing me pain in my hands and wrists. I gave in and bought a more practical stick, a red one with a soft gel handle, but it was still foldable. The folding nature meant I could decide to “hide” the stick if I wanted to, I could put it away and pretend I didn’t need it while I was sat on the bus or in a cafe, I didn’t have to deal with the stares or the questions, I appeared to be like everyone else, and for a while I needed that.

For me, starting to use mobility aids made my disabilities feel more real. It felt like I was admitting I was broken, telling the world I needed help in a way I had never done before. Being able to choose when to show my sticks gave me the impression of control, and I clung to it.

It wasn’t long though before my mobility deteriorated further and it became clear that walking sticks were no longer enough. I needed something I could put my full weight through, something that would take the pressure off both legs. It was time for crutches. My first pair were standard NHS crutches, silver with hard handles. I told myself they were temporary and for a while I only had to use them intermittently. I actually found I didn’t mind the crutches as much, people just assumed I had an injury, they didn’t stare or point, and they didn’t make unkind comments. When my mobility continued to decline and my crutches became more of an every day need I invested in a pair of blue crutches with soft handles, making them much easier and more comfortable to use for long periods of time.

The one thing I found difficult with crutches was that I couldn’t hide them, I couldn’t just put them in my bag “in case I need them later”, I had to use them the entire time I was out and at times I felt like a fraud. Even though I was in constant pain, and even though I almost fell a few times because my leg couldn’t take my weight, I didn’t feel “disabled enough” to use walking aids full time. I felt like I was being weak or over exaggerating. The truth was I just hadn’t come to terms with my level of need yet, I was still stuck in the “its not that bad” phase. I’ve always expected too much of myself, I always expected myself to cope with the pain without help. I realise now that I was being unfair to myself and to my body and that I probably should have started using mobility aids much sooner. Once I got comfortable using them, my crutches opened the world up to me, I could walk further, keep mobile on high pain days, protect myself from falls and maintain my independence. When I first started using mobility aids, I worried that it would make me appear vulnerable and that would lead to people taking advantage, but instead making my disability visible meant that other people became more aware of my needs, people didn’t judge me for using the front seats on the bus, people gave up spaces for me in cafes and trains, people held doors open and helped with bags. I got to see the best side of humanity, and it made me feel hope for the world.

Eventually , about a year or two before the pandemic, I began using wheelchairs on longer days out or on bad days. I usually borrowed them from the customer service office where ever I was, but when the pandemic happened most places stopped offering this service. I realised how much I had been relying on this service and after a few months of internal debate, I finally took the leap and got my own wheelchair. It’s nothing fancy and I will probably need to upgrade to an electric one in the future, but its made the world accessible when I would otherwise be trapped inside. I mainly use it for days out as walking more than a short distance is painful even with crutches, but I have also used it for medical appointments on really bad days. Without the wheelchair I would have had to cancel those appointments as I physically wouldn’t of been able to walk. I have had amazing experiences with my family that were only possible because of the wheelchair. I was apprehensive about getting it, I didn’t know if I was disabled enough, I didn’t know if people would judge me, I didn’t know if it would even be used, but now I view it as freedom. I didn’t want to admit how badly I needed it, I didn’t want to admit how bad my health was getting, but it opens a whole world that would other wise be impossible to get to. It keeps me safe, it gives me peace of mind, and I am so grateful that I made that leap.

How the Covid 19 pandemic has changed my life

The covid 19 pandemic changed everyone’s lives in so many ways, the worst of which was the loosing of loved ones coupled with not being able to mourn them the way that we would have wished. Many also lost jobs or were put on furlough, we all went through lockdowns and being told to stay at home and be separated from family and friends. For the vast majority, most of the impacts started to decrease as the number of infections and restrictions lowered and society began to open up and in a lot of places life has returned to how it was before the pandemic happened. Despite this, there is still a proportion of society still living with restrictions and potentially life long changes due to the pandemic.

Before the pandemic I was very independent, I was able to use public transport and could go to doctors appointments, hospital appointments, blood tests, scans and even pick up my prescriptions either by myself or with my fiancé. I was able to accept any appointment that I needed. I would only have to turn down appointments if they were in hard to get to locations or if they clashed with something else. Through out the pandemic I wasn’t able to use public transport because of the infection risk, this meant that I could only attend appointments if someone else could take me. I had to turn down appointments all the time. I couldn’t go get my prescription. I couldn’t even go get a coffee. I was trapped.

Although I am now fully vaccinated, I am still more at risk than the general population because my immune system doesn’t respond to vaccines the way a healthy persons would. I still have to wear a mask, I still can’t see my family the way I would like to, I can’t just go get a coffee without assessing all the risks.

Even if it was safe, there isn’t enough public transport. During the pandemic the local bus company dropped the number of buses on the route due to the drop in people catching them and to cope with driver absence. This meant that for a long time buses were only coming once every hour or two. When the restrictions started to lift, the buses were reinstated in some areas but not in mine. Recently they were supposed to but the buses back up to every half an hour but because of driver shortages buses were being pulled from the route at least four days a week with only 10-20 minutes warning.

As an example of the problems this creates, I used the bus for the first time in March last year, I was attending a doctors appointment and while I was in the surgery, the bus home was cancelled due to staffing issues. The next bus then didn’t show either. This meant i ended up being stuck outside the doctors for over an hour in freezing cold and wet weather with only my crutches for support. By this time I was unable to stand any longer so I went back to the surgery to wait for my father to pick me up from work. In total i was out of the house about 3 hours longer than I should have been and was exposed to Covid for a lot longer than necessary. This experience proved that the buses are still unreliable and so I am stuck using expensive taxis or grabbing lifts from my dad. While this isn’t all because of the pandemic, it’s certainly been a contributing factor.

I have always had to be careful around infections, but thanks to covid i will always have to look over my shoulder, I will always have to take more precautions than the average person and I will probably find that I’m always having to defend my decisions to wear masks and be selective about my environment and who I spend my time with. Due to being unable to leave the house for so long my mobility deteriorated much more rapidly than it would have if I had been able to keep active and keep attending my appointments. I will probably never get that mobility back. I missed saying goodbye to my nan because it was too risky for me to go to the funeral, i have missed my niece and nephews 18th birthdays and I may have irreparably lost my independence.