I’m starting to dread these words almost as much as the question “how are you?”. It normally comes not long after I’ve explained how I have a long term illness, how it effects my life and how it’s not likely to improve.
After someone’s suggested something that might help. People tend to wish me on my way with the sentiment “I hope you feel better”.
I know what the person is trying to say, they’re trying to empathise with me and be hopeful about some future improvement in my daily experience.
The problem is though this sentiment is counter initiative to the understanding I have of my illness. Chronic illness is unlikely to improve and can only really be managed by daily management and hardwork. It rarely gives us a break and you rarely experience that lovely, rising sensation of feeling better, of something lifting away.
Despite what the person says, when someone says this to me part of me always feels like they haven’t really listened.
At some point along the way of meeting someone (if it’s someone I’m going to meet with and work with regularly), I’ll have to explain what endometriosis is, it’s impact on my life and crucially, how it’s not curable. This is something I’ll likely have for the rest of my life.
You’d be amazed how many people can’t believe that an illness is incurable, that there’s nothing that a doctor can do. This is perhaps because most people are so used to a doctor being the go to person to sort out their aches, pains and problems. In the mind of a person who is well, their knowledge is limitless and they seem able to help them with everyone they could possibly need.
The reality is with chronic pain and chronic disease is that you end up usually knowing more about it than a GP, so you know that the idea that you’ll wake up and magically feel better one day is complete fallacy.
Feeling like I won’t feel better isn’t negative, it’s realistic
Truth be told, persistent pain and chronic fatigue is my new normal, whether I want it to be that or not. Someone without a long term illness might accuse me of being overly negative, but we are the people that have to live with the mundane details of illness, we know what’s normal and realistic for us and some of us have come to terms with the fact that we have fewer and fewer symptom-free days and this is likely to be the norm for the rest of our lives.
Honestly, I think most of the people who say “I hope you feel better” are being too optimistic about an illness I know more about. It smacks of someone comparing chronic illness to regular illness, that there will be a day when I feel better, that it’s something I just have to wait for. We all know it’s not that simple.
When you accept your illness and start to work with instead of against it, that’s the turning point at which you’ll start to manage better, and healthy people may not get that, they may think you’re identifying with your illness too much (even though that’s the way many of us are able to cope).
A long term illness is hard work, and so is staying well
In my experience with endometriosis, the days where I have felt better are generally as a result of my own work. How I pace my day, my exercise routine, staying on top of my medication and working with my healthcare professionals to slowly offer some relief from my symptoms. The idea that good days appear on their own is pretty rare in my experience. No amount of rest will sate my symptoms, and all the things that a well-person would try to make them feel better (such as drinking coffee when they’re tired) hardly ever dents my lasting fatigue.
Staying well (despite my illness) is the main focus and effort of my life, and it’s wrong to reduce it to chance, luck or positivity.
What should you say instead?
I’m always mindful of the the reality of chronic illness when I speak to people with persistent pain and fatigue. So I prefer to say “I hope you get some relief soon” which makes it clear that you want someone to feel better, but understand that pain symptoms are real, and illness works as it wants to, and not the other way around.
It gives the message of support while properly understanding the health limits of the person in question.