Many people don’t mean to of course, but to some people you’ll always be that person who is always poorly rather than just you.
It’s one of the hardest ideas to grapple with many years into illness. The concept that you want to be treated normally, but have different needs to other people and occasionally need some support from others, and that means telling people that you need help.
When to tell people
It’s definitely one of the downsides of having an invisible illness. You don’t get the support you often need because people realising that you’re feeling well relies on you being able to communicate your problems in a way that isn’t going to upset people.
I know it’s a problem in my case because won’t realise that I am unwell unless I tell them. My default position is to not tell people in fact, for most people in my life that I not going to meet more than once, it’s simply easier. For anyone that I meet with or work with regularly though, the topic is going to come up eventually, when I am less capable of hiding my pain and fatigue.
So I tend to tell people about my illness on my terms when it suits me, and for the most part that works.
Except sometimes people’s behaviour can fly into one of two extremes.
One way or the other
Some people try to completely ignore my illness, and carry on normally because acknowledging the fact that I am ill goes forces people out of their societal comfort zone. Suddenly questions like “how are you?” are strangely dangerous, and avoided altogether, quite suddenly I become the elephant in the room.
Other people start to treat me like I am made out of a precious and very fragile stone. I start to get a lot of (often unneeded) help, their language becomes softer, simpler and slower. It’s a very well-meaning reaction but occasionally borders on patronising without meaning to.
Because here’s the real dichotomy. Someone who’s been ill for many years, is extremely robust, tenacious and strong-willed. You have to be with any chronic illness. Even someone who feels like they are struggling is working harder than the average person to simply “be”. So you don’t have to be wrapped up in cotton wool by somebody unless it’s on your terms.
Any shame that you experience (because you feel you are able to do less than someone else) is because you are comparing yourself against what other, healthier people want, and like self-image there comes a point where you have to stop comparing yourself to others unnecessarily.
The best approach
The thing I try to remind people of is that I have come to terms with my illness, I accept it and I live a very happy and worthwhile life despite it. They don’t need to feel sad for me, they don’t need to pity me, if they could just treat me normally and respond to my requests for support when I ask for it, that’s all I need.
Most people make an effort, try to guess what’s wrong with me, or better still ask questions, and I’m only too happy to furnish them with the details if the environment is right. I think of someone’s health or ill-health and wellbeing as something as normal as breathing, but that’s because I’ve been chronically ill for some time now, and most people find talking about incurable illness difficult.
While I am not ashamed, sometimes talking about my illness in detail does mean taking the needs and understanding the knowledge of the other person involved, and that sometimes means talking about it privately with someone rather than shouting it out in a crowded room.
So, ask lots of questions, don’t be embarrassed by our illnesses, but above all treat us all like human beings.