I tend to forget sometimes that despite how awful I feel, I look pretty normal to the outside world. Somehow despite feeling generally unwell from day-to-day I am able to hide how poorly I am feeling behind a normal face that everyone recognises. It sounds like a great problem to have, but it is one of the ongoing dichotomies that someone like me with an long-term illness faces. Standing on the line between chronic illness and perceived wellness.

This sentiment of visual normality that floats around me all day might go someway to explain the numerous comments and platitudes I hear from people about how I could cope with my illness better. As when I start to talk about how it effects me, others around me feel that it’s appropriate to share their ideas about improving my lot as if their suggestions could improve my quality of life further.

While these thoughts are well-meaning it’s important to remind people that we are the experts when it comes to our illness.

Besides, all this well-meaning waffle from others does all is marginalize how well we do manage with my illnesses. I am the most experienced person in the room when it comes to my unique experience of pain.

Here are some examples of what I mean:

Have you tried [cure 1] and [cure 2]? It really helped [person] when they had [illness].

How we each manage individually with illness is very much similar to how we each manage with and experience pain – it’s extremely subjective and varies from person to person.

So suggestions from other people (particularly those who are well themselves) ends up being a bit of a mixed bag. It’s clearly an attempt to help, but it’s an unhelpful one. First these suggestions assume that someone can appreciate what you’re going through, and this is usually based on an experience of acute illness, or someone else that they knew that maybe did find their suggestion helpful.

Here’s the thing though, my experience of illness isn’t like anyone else’s. What works for another doesn’t necessarily mean it’ll be a miracle cure for me, as my experience with long-term illness isn’t that simple. I should know I’ve been wrestling with it for some time now.

This tends to be the first thing I hear after I tell someone that I am chronically ill once that information has sunk in. People tend to fly immediately into “we can fix this” mode. As if it’s something I’ve not tried already.

I’ve heard this more times than I can describe, so it’s miraculous that I remain so polite about it. There’s a whole dusty attic in my head full of suggestions and platitudes from well-meaning wellbies.

Because no matter which way you look at it it’s highly presumptuous to find out about someone’s chronic illness for the first time and naively assume five minutes later than you can improve it. We’ve been chasing that Holy Grail for more than a few years now newbie, join the queue.

“You shouldn’t let your illness run your life.”

I crack up hearing this one, while not as common I find it more humourous than hurtful. The very idea that we can pop our illness in a box, wrap it up in pretty paper and sling it in a cupboard somewhere is extremely patronising. Illness is with me just about every minute of every day, the only way I manage is to distract myself from it’s worst issues and roll with how it’s treating me. Accepting the presence of long-term illness in your life is the biggest step in coming to terms with chronic illness and finding out how to carve out a good quality of life despite it.

Like it or not illness is part of who we are now, and trying to ignore it and “carry on as normal” like it’s something we can forget just doesn’t work in the real world.

Declaring that someone shouldn’t let illness rule them is short-sighted at best and extremely damaging when it comes to enabling someone to take control of their own pain management. Pain and illness has to run your life a little bit sometimes, it’s par for the course.

“You shouldn’t be doing that.”

Why shouldn’t I be doing that? Because someone else thinks it’s not appropriate for me to do a particular activity? The only person who decides what I should and shouldn’t be doing is me. (With the possible exception of my health professionals). Chances are I’ve weighed up whether or not to do something myself, looked at the pain and fatigue I’m either having right now (and if I can manage with it) or the payback I am likely to have, and I’ve decided to proceed. I’ve made a calculated decision about whether or not to do something, and if I say it’s okay, then it really is okay.

The people around us need to have more trust in our ability to analyse our own symptoms and experience of illness and realise when we’ve reached our limits. Only we know for sure, and when we need help, we’ll ask someone for it.

“Oh, I know what you mean, raising kids is very hard work.”

While I’ve no doubt that looking after children is hard, it’s not a fair comparison to make. Most people make a choice (on some level) to have children. Illness was not a choice that was given to me, and it’s not something I’d actively pick if given the chance.  There are very few positives to having an illness that will never be cured, and there are multiple, and obvious benefits to having an active role in the development of another human being.

Not to mention the fact that some (frankly amazing) people have to cope with both of these challenges. 🙂

Then there are many of us who are unable to have children. Either because of the fertility problems that some chronic illnesses cause or the fact that some days and weeks we hardly manage to look after ourselves. Starting a family isn’t a realistic option to many of us that are ill.

So it’s a poor example of tact to roll out your children as a olive branch of attempted understanding. Both challenges are very different.

So we really are the experts

We’ve lived with our illnesses for years, we’ve researched our treatment options, we know our symptoms and side effects inside out and we know the facts and the myths of our particular chronic illness. The bottom line is we have the hands-on experience of what it’s like to live with something this difficult and still live to talk about it. There are some things you can’t learn about by simply reading about them, and we’re best placed to know about illness by enduring it.

So it’s our job to explain to others what our illnesses are, what help we need and how we won’t get better. How chronic illness means accepting where isn’t a simple answer, only a series of approaches and techniques to understand.

In short, we lead when it comes to our illness and everyone should follow.