This is a lesson I learnt very early on in my endometriosis diagnosis. It started when the pain started, I knew something was wrong, but people started to try and explain the pain away.
I’m reminded of it again with the diagnosis of my second condition. Living with people who are not unwell can be exhausting, as exhausting as the pain sometimes.
I explain what living with chronic illness is like when it’s worth it, but on the whole living with illness means picking your fights with people carefully and largely muddling on through everyone else’s healthy status quo.
Here are what I think are the three types of negative reactions to disclosing your chronic illness.
Visual people – basing your physical health on how you look
In my experience people that say things like this are generally well meaning. They say that you don’t look sick because the news has come as a tremendous shock to them and they’re doing what they can to sound supportive and positive.
This is the most common reaction I have when I tell people that I am in pain all the time.
But you look great
Of course it has the exact opposite reaction for us, but as time goes on this one becomes easier to manage with. The trick is to challenge the assumption carefully, without prompting a pity response.
People tend to feel helpless when you share your reality with them, and they start to panic and this is the first thing they can think to say. I try to calm them down by explaining how that reaction is understandable, how my pain is my new normal and I manage as best as I can.
If people really struggle to wrap their heads around it, I explain why I’ve told them – normally its because it’s someone I see a lot, and I didn’t want to worry them further by having a bad day of pain and them getting scared.
People who require proof
And look for proof in everything you do.
I saw you do it last week, so you can do it again.
Some people still can’t wrap their heads how you are sick all the time. Usually this is because they’re still living in an idealised world where illness means seeing the doctor, or taking a tablet and one or both of those options fixing the problem.
This view ignores the our experience of chronic illness, because the things that people normally try to help them with short term illness don’t apply to us, we don’t fit the normal expectations some people have of illness.
Even life-threatening illness like cancer has a care plan and an urgency and regularity to the treatment, something that most people who are chronically ill do not have. I think there’s a widespread belief that people with life-limiting, chronic illness get more support than we actually do, and as such some people don’t understand what all the fuss is about.
Things like social media can make this type of person insufferable to be around. They use any good news that you share as evidence for your illness not being real, or not being as serious as you say it is. They forget that many people who are chronically ill have an illness that fluctuates, or that you may want to put the pain that is on your mind 99% of the time out of your mind when you share news with the world.
You can keep information about your illness from people, that’s your choice, and you shouldn’t be judged for what you choose to impart to others. You have nothing to prove.
Side note: I tend to overwhelm people like this with information about what I deal with until they back down – most people will. I’m also actively purging these sort of unsupportive people from my life – for a much happier life.
People who have no experience of physical or mental illness
I’ve noticed that the people that get invisible illness the best – or pick up on it the quickest are those who have had experience of it themselves. Either because they’ve had some sort of illness themselves or have seen someone close to them (other than you) be affected by similar issues.
So another mentality that’s hard to manage with is someone with no experience of illness at all. Someone who cannot appreciate how difficult living with chronic illness can be. They have no personal experience to draw upon, they find the empathic part of the human experience quite hard to summon up.
I know this person well because I used to be one.
It can be occasionally frustrating, because they’ll try to compare your experience to that of someone else, or they’ll point out something they think is equally bad in their life, but l eventually they can take what you have to say on board.
Just be prepared for a few well-meaning suggestions on how to improve your chronic illness before you reach that point.