When you become ill with a chronic illness like endometriosis, no one mentions how people will perceive you differently.
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.
I want you to know that I find you very inspiring. I’m sixteen years old, and have been dealing with chronic pain constantly for over two years now. The doctors think I have endometriosis, and all we are waiting for is an official diagnosis. Yet, even if I don’t, I can still relate to the chronic pain and fatigue you experience everyday. I was hoping you could give me some advice. A lot of people try to understand, and work with you when they know you’re in pain, but there are always those who don’t believe it’s so bad since they can’t see it. This year I’ve been doing school through the homebound program, but last year I had a few teachers who were angry when I was absent too much. They accused me of skipping school, and making it up even though I had doctors notes. Do you have any advice for working with superiors who just don’t understand, or won’t work with you?
I hope you get a diagnosis soon. Sometimes the hardest thing about living with chronic pain is the uncertainty. Not knowing why you’re going through the things that you do. Knowing the name isn’t a huge comfort, but it certainly helps steel your resolve, so that you’re no longer fighting a total unknown.
You’re always going to have people around you that you never quite see eye to eye with. I like to think of it as the people that don’t make an effort to understand what you’re going through aren’t generally the people worth having around you, but I know it’s not always this simple, and sometimes the people that are very unhelpful are sometimes people that you can’t avoid.
There’s no simple answer to this, but my advice would be the following. You know how poorly you are, and how sick you feel. No one else can judge you for the decisions you have to make to get you through the long haul of your life. Never let any one person let you lose sight of this fact. You are doing your very best under very trying circumstances. People like that (even with a weight of evidence to prove what you’re saying even after diagnosis) will find a way to disprove things no matter what you do or say. This is because they find it easier in their healthy little world to ignore what you’re going through rather than the face the truth – that young, capable people can be sick and can never be cured. That’s hard for anyone to take in, and them least of all it seems.
Keep talking, keep sharing what you’re going through, don’t let them forget about you. It’s not complaining, it’s one of the few tools you have to cope and it’s yours to learn to get confident with and to master.
Remember that you have to work harder than some of the people that walk this Earth, and you’ll do it with a resolve and a strength that they’ll be lucky to ever muster. 🙂
Hey you.. happy cycling. Keep smiling and making us smile
So good to hear from you Nicci, I shall do 🙂
Your lucky i get no help and friends, family hell even people in town gossip about how im not really sick and im just lazy. My wife and kids even treat me different, sometimes i wish i was dead theres not one person on this earth that cares about me now that im sick and little used to them. Im supposed to stay in bed but i push myself everyday to clean house help the boys with homework, cook, work odd jobs and for what it changes nothing everyone still says the same terrible things my wife still pulls away and gets angry when i try to show her affection. I honestly think id be better off dead