advocacy – Chronic musician

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.

What not to say to a chronic illness patient

When talking to someone who is sick and in pain it’s only natural to want to comfort them and lighten their burden but sometimes it can be hard to know the best thing to say. Many of the things you would say to someone with a temporary illness or injury aren’t helpful to someone with a longer term illness or disability and it may even make them uncomfortable. As someone with many chronic illnesses who has dealt with chronic pain since a young age I regularly come across people who genuinely want to make me feel supported and cared for, but end up saying things that are unhelpful and even hurtful. With this in mind I want to share some of the things that are best avoided and where applicable suggest alternatives.

1 – “ Get well soon “
The reality of chronic illnesses is that they don’t go away, people with a chronic condition will have that condition for the remainder of their lives and will likely have some level of symptoms on a daily basis.
While well meaning, telling someone to get well soon when their illness is permanent can come across as though you don’t understand the nature of their condition or even as though you don’t believe that they are really that sick.
Where appropriate it may be better to say something like “I hope you get some respite from your symptoms” or “ is there anything I could do to help you cope with the symptoms “

2 “You don’t look sick”
Many chronic illnesses and disabilities are invisible, this means that it is difficult or even impossible to tell someone is sick or disabled just from looking at them. Although you might be hoping to boost their spirits, telling someone they don’t look sick may make them feel like you don’t believe them. Many disabled or chronically unwell people have experienced mistreatment such as being sworn at, denied access to an accessibility need or accused of lying all on the basis of how they look. If someone tells you they have a disability or illness or that they have an access need please don’t question them just because they look “ok”. If you want to give them a compliment it’s much better to make it unrelated to their illnesses such as “I like the way you’ve done your hair” etc.

3 “ You just need to….”
When someone is unwell and struggling its natural to want to fix it and make things easier for them. The problem with chronic illnesses is that very often there isn’t anything you can do. This doesn’t stop people from trying and most chronic illness sufferers have heard a never ending list of “ you just need to… “, this can include exercise, sleep, eating, drinking, medication etc.. while well meaning these things are unlikely to help and constantly needing to explain this is exhausting. Personally I would much rather have someone ask me if there’s anything they can do that would make my day easier such as feeding my animals for me or helping me dry my hair.

4 “ Someone I know has the same illness as you and they can work/walk/cope without meds /etc”
The symptoms and impacts of chronic illnesses can often be very different from one person to another. For example, one person with Crohn’s disease may be able to eat whatever they like, work a full time job and still have the energy to go out and have fun on the weekends. Another person with Crohns may be unable to eat and need to be tube fed or have a full liquid diet, or they may be unable to work due to the level of pain or sickness they experience and they may be too fatigued to perform basic tasks such as cooking a meal so going out for fun is out of the question. For this reason, comparisons are really unhelpful in chronic illnesses and may make someone feel judged or misunderstood,

5 “ Don’t eat that.. “ Or “ You should eat more”
Many chronic illnesses can cause issues with eating, the person may be experiencing symptoms that make eating difficult such as nausea and stomach pain, or they may have a hard time making healthy meals due to fatigue or joint pain, or they may be on a restrictive diet to help treat their illness. Growing up I was seriously underweight and constantly dealt with people telling me to eat more or judging the type of food I was eating. When I got diagnosed with coeliac disease and switched to a gluten free diet people would comment on how the food looked or smelled or tell me to eat a “little bit “ of something that contained gluten because they thought I was restricting too much. This advise was dangerous and made me feel judged and alone. Unless someone is eating something they’re allergic to, its better not to make comments about their diet as you may not know why they are eating a certain way. Instead, offer to cook for them and allow them to choose what they would like, if someone is too sick to cook they may appreciate a good meal from someone who can cook. Don’t pressure them though, sometimes the prospect of eating is just too painful.

6 “ Just be positive”

While a positive attitude and approach to life with chronic illnesses can help some people to cope with the difficulties of living with health issues, it is not possible or healthy for people to be positive all of the time. Living with illness or disability is complicated and often involves difficult decisions and long nights. It’s natural for anyone to have hard days or days where they just feel fed up and that’s even more true when going through hard times. If someone tells you they’re sick or having a bad day, its much better to listen to how they feel and try to validate their feelings by acknowledging the challenges they face.

7 “Stop being lazy”

Many people with chronic illnesses suffer with fatigue, this is extreme tiredness beyond normal levels and it can’t be fixed by a good nights sleep. Fatigue makes even simple tasks extremely difficult as it feels like you’re wading through water with every movement. Couple this with other common symptoms like nausea or pain and its easy to see how someone with chronic illnesses can find even the most basic chores can become impossible never mind holding down a job or keeping up with constant housework. If you see someone resting please don’t assume they’re being lazy, they may be fighting an internal battle that you just can’t imagine.

8 “ There’s no such thing as a permanent illness”

It might seem hard to believe but this is something I hear at least once a week. I understand it can be hard to accept that it’s possible to get sick one day and then never get better but unfortunately i happens all the time and often with very little warning. If someone tells you that their illness is permanent or that they wont get better, please treat them with kindness and acceptance. Many chronic illness fighters have to advocate for themselves every day when trying to get the correct treatments or getting their access needs met. The last thing they need is to feel like their family or friends don’t believe them.

9 “There are others worse off than you”

This is something I encounter all too often. While its good to be grateful for the good things in life and to acknowledge the blessings and privileges we enjoy, its also totally fine to be upset, mad, scared etc about the things that aren’t going well or the things we can no longer do. When someone is confiding in you about a difficult time in their lives or explaining how their illnesses or disabilities impact them, telling them “there are others worse off” can make them feel dismissed and as though they are being judged for how they feel. I always explain it like this – if you’re in A&E with a broken leg, and there is someone next to you with two broken legs, does that mean that your single broken leg doesn’t hurt? Pain is relative and it is unique to the person experiencing it. I am in constant excruciating pain, I have to inject myself with chemicals and it really hurts and a simple virus could end my life. All of that stuff is scary and difficult and it is both totally normal and completely valid for me to express that difficulty and having those feelings validated by the people who love me makes me feel much less alone.

10 Just stop thinking about it / Talking about it

Countless people have told me to stop thinking about my illness, going as far as telling me to pretend it doesn’t exist. While I understand that the concept of forgetting about your illnesses for a while may seem nice, its not always that easy. Many people with chronic illnesses have constant symptoms such as pain, nausea or fatigue which demand attention and it can be impossible to just ignore them. For others, ignoring their illnesses may actually be dangerous, they may have symptoms that need careful monitoring or they may need to be vigilant about what they eat and how it is prepared, or they may need to take regular treatments. Even if its not impossible or dangerous,telling someone to forget their illnesses or stop talking about their symptoms sends the message that you aren’t really there for them. It makes it clear that you aren’t interested in their difficulties and may not be supportive of their physical or emotional needs. Many people with chronic illnesses have experienced being shunned by society or accused of attention seeking, even of making things up. There are few places people with chronic illnesses can be truly open about their symptoms, so please don’t make them feel like they have to hide it when they’re with you.

11 Your spouse must be amazing to stay with you

It’s never ok to make assumptions about someone’s relationship no matter what the circumstances, some of us are blessed enough to have other halves who are kind, compassionate and treat us with love and respect, but that isn’t always the case. Many people with chronic illnesses have stressful relationships with their partners and even their wider family. It’s not uncommon for chronic illnesses to cause arguments within a relationship even when the people in it love each other dearly. Apart from that, disabled and chronically unwell people have just as much right to be loved as everyone else and we bring a lot to our relationships, relationships take hard work and dedication from both parties and cannot survive without give and take on both sides. I always say I’m blessed to have my fiance, he’s amazing, he’s kind, honest, respectful, compassionate, considerate and takes excellent care of me, but I know he feels just as blessed to have me, and that’s just how relationships should be.