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.
Chronic musician 