When you have a chronic illness, it’s common for us to want to research about it and read a lot of articles, to write our own experience to get support and feedback from chronic illness communities online. Our friends and family might also be researching these things on our behalf (regard yourself as exceptionally lucky if so).
However it can be difficult to be positive in this very negative situation of ill health. Too much can be promised by articles and you can come across a lot of toxic positivity i.e. “Have you tried Yoga?”
It’s also difficult writing articles from an author’s point of view. You want to be positive but also realistic. You can get caught up in a positive bombardment, where you will list all the things that can help. This can be ignoring a main issue with chronic illness, which is, that they aren’t easy to treat and there’s likely no magic cure. Improvements can take years and everyone wants to be fixed yesterday. A lot of the solutions to chronic illness, can also carry risks. There’s no perfect health solution for anyone, everything carries risks. The common risk is that you spend energy on a solution, and nothing improves. With chronic illness, it’s not unheard of to go through years of trial and error before you find something that helps give you even a minor improvement in your symptoms. This situation can wear you down on top of your symptoms, the constant searching and pining for the next cure.
At the start of your chronic illness, you might have a lot of energy for reading and writing about it, it’s something new, and something you might feel you can conquer. After years, you realise you are stuck with it, nothing improves it and you’ve lost all hope, you might live in misery due to this.
Personally I want to help people in similar situations to myself. Being positive can be helpful, but it can also be damaging. After all I’d hate to write a positive article and someone read it, and then feel worse for it. Being too realistic can also dampen people’s mood, so it’s a fine line to balance. Not to mention, there are so many different types of people, you can’t write an article for everyone’s tastes.
I think writing about your experiences with chronic illness, can definitely be helpful. Although the problem is that you often get stuck into repeating yourself. If you write a journal, every entry might be “Today I’m tired and painful, and did nothing of worth, I hate my life”. Being someone with chronic illness, also means you are probably struggling with a lot parts of life, because it’s an extra burden that healthy people don’t have, and even they struggle with life. Ideally you write about details or thoughts that are unique for that day, which to be honest can sometimes be hard to identify. Writing also requires a lot of energy and concentration, so it might be difficult for someone to write out exactly how they are feeling, without dropping themselves further into the well of fatigue in the process.
I think as with most things in life that a balance is required. Some positive outlook, but some realistic outlook too. Maybe writing a daily journal is tiring and pointless, but a weekly one could be the right balance, or even monthly as long as you take notes. Reading articles everyday over your chronic illness, could be considered obsession at some point. I think it’s similar to reading bad news every day, and ideally you don’t do this. Once or twice a week at set times, seems to me at least reasonable. It’s important to keep up to date with new findings and research in regards your chronic illness, and it’s also important to check in with communities that focus on your illness too.
However it’s very easy to retreat into a chronic illness personality. Because illness can define our lives so much, and become so important, we can tend to latch onto the labels and experience of being ill. It’s common for people to dwell daily on their illness, and this isn’t really healthy in the long term.
It’s not that daily awareness of the struggles of illness is wrong, but daily obsession around it, isn’t likely healthy. If your ill health is always on your mind, you aren’t really giving the thoughts a rest. Making space for life is one of the most important steps to take when you are chronically ill, because you can easily become wrapped up in pain, fatigue and other symptoms that plague you. Coping with symptoms is a constant battle I know, but to add on constant thoughts and interactions related to them, can be too much.
It is easier said than done, but giving yourself mental space to experience other things outside the realm of being chronically ill should really be a goal every day. When your symptoms are interfering with your mental awareness too much, this can be an impossible task, and therefore, you shouldn’t put pressure on yourself to be mentally free from your chronic health issues, but at least it should be an option to be aware of.
The main problem is often, we might be doing something, and a symptom occurs to intrude on that task, such as pain. You might try to avoid it, but ultimately depending on the pain, it might not be tolerable. Taking painkillers can make you drowsy, and whilst they are a solution for some people, they aren’t great to take long term. How can you then not dwell on pain, the pain changes your behaviour. These situations are sometimes unavoidable, even with all the pacing and preparation you can muster. I think one solution is to separate out what can be avoided and what can’t be, and to plan for both occasions. Even if your plan isn’t perfect, it can help enormously with the mental anguish of chronic illness.
I’ve had chronic back pain, thanks for the article. 🙂