Whilst pain-free days are a complete rarity for me at the moment, and better days are few and far between, when I do have a day where my symptoms are quieter I often find I am more concerned by it than happy. And it seems like I’m not the only one.
I’ve seen a flurry of social media posts and questions from people with chronic illnesses expressing their worry, concern or just generally how it makes them feel psychological when their symptoms are being well-behaved. It is nice to know that I’m not the only one who has these thoughts and feelings, but seeing it become so common across my news feed got me wondering why.
Why is it that on days that when we feel better that instead of going out an enjoying ourselves and doing the thing we normally couldn’t do, do we find ourselves questioning it, focusing on it and worrying about it? It’s almost like the fact our symptoms are improved or absent must mean our illnesses are suddenly gone or cured, when actually we know that this isn’t true.
But I think it’s a bit deeper than that.
A whole heap of us in the chronic illness community have had a Hell-on-earth fight to get some attention regarding our symptoms, let alone a diagnosis. So it does seem understandable that when we wake up to feeling a lot better or symptom-free, we worry as to what is going on. Because so many of us have had to diary our symptoms, push them upon doctors refusing to listen or really listen to them, when they are not there it feels like something is wrong (or even missing).
And that is weird way to put it, because quite clearly, if our symptoms were being good, then it definitely means something is not wrong.
I think it stems right down to the simple fact of getting people to believe us. It’s often a daily battle for some us that we go to extreme lengths to have our illnesses seen. I can guarantee that at one point in a spoonies life they will have had someone question their sickness or ability to do things when they are having a better day. I have had this experience on more than one occasion, and even though mine tend to be related to work, it still fits.
The fluctuation in our symptoms or illnesses can create such an up-and-down pattern that it is hard for people to keep up. We may be able to do something one day and not the next, but that is ok – people should stop expecting us to have a steady amount of energy, pain or illness that is the consistent.
We are also a community that are pretty damn good at hiding how we really feel. Have you seen any of the “#makeupandsmile” or “#iamwhatsomeonewithaninvisibleillnesslookslike”? campaigns on social media? They are all about how we look totally fine from the outside, but on the inside could be really hurting or unwell. So on those days where we aren’t having to hide too much, we really don’t appear much different to those who know no better.
So why does it play on our minds so much? Well, I’ve come up with these ideas;
- We’ve had a long road to get a diagnosis, including getting healthcare professionals, colleagues and friends/family to believe us. On days where our symptoms appear better, there is that tiny seed of worry in the back of your head that someone will question you, or perhaps the next time you visit your doctor they won’t see the problem in the same light
- If a new medication is involved with a stage of feeling better, than there is a worry that this could change a treatment plan. For example, your consultant might give you a new drug and tell you “this is the last thing we’ll try, if it doesn’t work I’ll order these tests/operate on you” – this might make you worry that the other aspects in the plan will no longer be required and something is missed.
- Our symptoms are often 24/7. They are part of us, but don’t define us. The fact that we are not having to wake up to take medication or stop halfway through an outing can feel super alien – we are much more in-tune and aware of our bodies that we can’t help but focus on it
So I think as much as it takes a strong mindset to not be overwhelmed during flare ups or episodes of worsening symptoms, I think it also takes a strong mindset to be able to celebrate and enjoy these days where symptoms are more tolerable, and almost not care why they are better or what other people might think. I know in the past my husband has told me not to worry about why my symptoms are better, just enjoy them, but it is quite hard to do that. When the bad days out-weigh the good days, no wonder it comes as a shock to the system when we are feeling better.
Good days, whatever that may mean for you, are certainly something to be enjoyed and not taken for granted. As I’ve mentioned at the start of the article, better days are in a really limited supply for myself at the moment, so we’re taking every one of them as an opportunity to do something we probably haven’t done for a while.
As hard as living with chronic and/or invisible illness(es) is, celebrate the better days and love each of them when you get the chance to.