When you have an invisible illness like endo there’s always going to come a time when you have to reveal yourself as ill.
But how do you do that without painting yourself as a whining loser?
‘Hi, I have endometriosis, a gynae disease that will probably make you uncomfortable when I talk about it and that you won’t even understand. You’ll never be able to see what’s wrong with me, you’ll just have to take my word for it. Ow. I’m sore. And, yeah, see? You’ll never understand.’
I’ve personally used a variety of different ways to get my point across and I think there are 5 different ways to express my illness.
1 – The Medical Way
Use this when you need people to get that you are actually ill and you have a recognised condition. Describe it using medical jargon and detail your symptoms. This comes in handy when registering for disability support at uni or explaining why you can’t do a particular event or activity. Generally, the Medical Way goes like this:
‘I have a condition called endometriosis. I was diagnosed five years ago and I’m currently on heavy pain medication and receive regular drug infusions. I suffer from chronic pain in my pelvis and back along with exhaustion, bowel problems, kidney problems and I have a very low immune system.’
2 – The As-Much-As-You-Need-To-Know Way
Involves revealing parts of your problem, usually to people you don’t know very well who don’t need to know what is wrong with you. Asking for a chair with better back support because you have ‘back problems’, shrugging off strange looks when you pop pills in public, saying your tummy hurts when co-workers see you filling a hot water bottle in the kitchen at work.
3 – The ‘You Know The Way I’m Always Sick?’ Way
Use with friends who know you have health problems, know how many times you go to the hospital or the doctor, know there’s something wrong but have never pushed too hard to find out exactly what it is. This is a tricky conversation, particularly with a male friend. One day the time comes when you just have to tell them. You use non-medical language and try to avoid specifics. For example:
‘You know the way I’m always sick? Well, it’s ’cause I have this thing called endometriosis. It’s not life-threatening or anything but it’s debilitating and there isn’t a cure. It means I can’t do certain things and it can lead to other things I’ll have to deal with later but I wanted you to know what it is that’s wrong with me.’
4 – The ‘This Is What My Life Is Really Like’ Way
This one is reserved only for best friends, close female family members and fellow sufferers. This is the warts and all account of every horrendous treatment you’ve been through, every doctor who told you it was all in your head and everything your body can and can’t do. This way can occasionally lead to tears. I don’t use this way a lot but it is necessary to release the pressure that living with endo brings. Having a rant about how crappy life is can help but only if it is received by sympathetic ears.
5 – The Vague Way
I used this way last night at a work dinner. The ‘young ones’ from the office (ie those in their 20s) went out for pizza (mine as cheese-free, thanks endo) and a relatively new guy asked what was wrong with me after a few of us, me included, were joking about me being the unhealthiest person they knew. This guy is great, in fact I chatted to him a lot the night before at the golfing party and my work mate has a bit of a crush on him, but I couldn’t tell him the name of what it is. It’s not that I’m ashamed. There’s nothing to be ashamed of. It’s just that I didn’t want to make him uncomfortable by telling him the full facts nor do I know him well enough to feel like he could handle it. I shrugged it off and said that I have a condition that interferes with everything and that’s why I sometimes have a hot water bottle at my desk or why I have such extreme moods. Then I told a funny story about a hospital visit.
Sometimes its hard to know which approach to use but there is no way that I could hide my illness. It’s part of who I am now and if I can’t accept that, then how can I expect other people to?