Since my diagnosis I have been trying to navigate the minefield of telling my nearest and dearest about my endometriosis. It’s actually been much more difficult than I anticipated- although having never been seriously ill before I don’t actually have a previous model to base it on. As with 90% of things I do, I turned to my good friend Google beforehand to seek some practical advice on managing the situation. Some of the tips I came across seemed really sensible and useful, like:
- Have some written materials to hand about what endometriosis is in order to better explain exactly what the condition is and how it affects people. That way, the friend can read and digest the information at the own pace and ask you questions when they are ready to do so.
- Break the news to people at a time when you feel physically and emotionally ready to handle it and be ready to accept that some people aren’t really going to ‘get it’ straight away.
- Just begin with telling those closet to you, and take some time to decide who else really needs to know the full facts.
Naturally, I ignored all of this good advice, and forged my own crazy path instead. I seem to have relied on three main approaches when telling people, which I have summarized below. I can’t particularly say I recommend any of them to you, but please feel free to learn from my mistakes.
Approach 1: The elusive explanation
This one, I am very sad to admit, probably stems from some shame I feel about what is happening to me, and worry that people will be dismissive of my problems if they know the truth. It’s probably not a very close friend who was targeted with this one, but somebody at least in my social sphere who I felt needed some sort of explanation for why I have been acting so strangely over the past few months. Also, it’s almost definitely a man. I have found that elusive explanations tend to go like this.
Friend: Are you OK?
Me: Um, I’m not feeling great lately, I’ve been struggling a bit since my surgery.
Friend: Still- really? Maybe you should go to your GP again. You should be fine again by now.
Me: I have. To be totally honest I know why I’m feeling crap. During my surgery they found out I have an incurable disease which causes inflammation and bleeding on my internal organs, and that is why I feel so unwell sometimes.
Friend: Oh right, that’s terrible. <awkward pause while they wait for more information>. Is it chrons disease?
Me: <panicking> YES! Er, yeah. Chrons. Grrrrrr horrible chrons.
Do not- I repeat DO NOT- tell people you have a disease that you don’t have. Even if you are panicking in the moment and are just agreeing with them. Telling people that, in fact, you don’t have that disease will make you look more mental than they already thought you are. If you don’t confess, you then have to put a lot of effort into maintaining the deception, like joining the Facebook support groups for Chrons and composing weekly posts, which is stress and hassle you just don’t need. (I promise I’m joking, I never did that bit :-)).
Approach 2: The emotional explanation
When confiding in close friends who have already been aware of many of the health problems I have been dealing with over the past few years, the emotional explanation tended to come out. In a way it is positive that you can trust these friends to be open with. Emotional explanations go like this:
Me: Dear friend, I need to talk to you about my surgery if that’s OK, well more about what was found.
Friend: Sure, what is it? I always have time for you.
Me: They found I have have severe endometriosis, which explains all the problems I’ve been having.
Friend: O.M.G that’s awful.What exactly is endometriosis?
Me: <Bursts into tears and cries hysterically for about an hour>.
This approach is a bad one because it puts that friend off ever asking you a question again, for fear of eliciting a meltdown. That friend will literally never acknowledge your endometriosis to your face again. Radical action is needed to address this. When I figure out what that action is I will update you all.
Approach 3: The over-share explanation
I can only assume this approach is the result of endometriosis induced insanity caused by sleep deprivation, medication, and crippling anger. This conversation genuinely happened in the pub with a large group of friends about a week after my laparoscopy.
Friend: Claire- how are you? I don’t think you’ve been around for ages?!
Me: Yeah, I’ve actually been off work having surgery.
Friend: Oh no- are you OK?
Me: Not really, basically loads of my internal organs are fucked and they said I’m probably not going to be able to have a baby.
Friends: Very. Awkward. Silence.
Another friend: You look nice though, have you had a manicure?
You’ll then just be regularly disappointed that none of these people have since approached you about what you’ve said, instead opting for the business as usual method. I also posted about my endometriosis on my Facebook account in what I think was a very polite and measured way. I have 352 friends on there. Three replied. THREE! Please learn this valuable life lesson my friend- over-sharing is not the way to go when explaining your endometriosis. Still, it’s good to have very conclusively proved that it makes people feel awkward. I am a scientist after all.
I wish I could just give all my close friends a letter, because I am clearly incapable of maintaining a normal adult conversation these days. I just want them to know how I feel, and be there for me. I need some extra support at the moment I think. I’d never actually be able to give them the letter though, I am way too British and reserved. But I drafted one anyway in the hope that it would be cathartic. Here it is:
I’m sending you this letter because our friendship over the years has meant so much to me, because I care about you, and because I truly see us being friends for many more years to come. However, over the past year you probably don’t feel that have been that great a friend to you- and that scares the life out of me. Friends really are very important to me. Perhaps you think I’ve become quite distant or disinterested in our friendship? Or maybe you think I’m depressing to be around, or boring because I rarely come out to social events anymore? I really wouldn’t blame you, I suppose I have been like that a lot of the time. But I want you know that I haven’t been acting like this because I don’t care about you, or about our friendship. Nothing could be further from the truth. You see, I’ve been feeling really unwell the last few years, and in August I was diagnosed with endometriosis. In some ways it is so good to have a diagnosis now, because I am hoping to use it to get the treatment I need to feel better. I know that you know this already, and I really appreciated how nice and sympathetic you were to me when I told you.
What I don’t think you know is how much endometriosis affects my daily life, and how difficult I am finding it to come to terms with my diagnosis. I know these things can be hard to hear, but please, let me tell you now. I think it will help both of us to move forward. I have stage IV endometriosis, which means that I have deep and widespread scarring on my uterus, ovaries, stomach, diaphragm, lungs, kidneys, bladder and colon. Because of this, I experience severe pain in my abdomen, rectum, back, shoulders, chest, neck, and face. This pain often lasts weeks at a time, and I find it really difficult to cope with life and get out and about when I’m having a ‘flare up’. For me, the disease also comes with an array of other symptoms which can be debilitating such as vomiting, diarrhea, headaches, and breathing difficulties. As my body tries to cope with these things and the inflammation they cause, it leaves me feeling constantly exhausted. Some days, I barely manage to get out of bed. This tiredness is unrelenting and nothing helps to get rid of it. This isn’t how I want to live or how I am used to being- I want to be full of beans again and live every day to the full. And to top things off, the severity of my endometriosis means there is a very real possibility that I am infertile. There aren’t words to tell you how much this breaks my heart. I try to push it to the back of my mind, but it is there every day just chipping away at me. I think Simon would be the most amazing dad, don’t you? Putting him through all of this makes me feel so guilty, and the fact that he is always so loving and supportive almost makes the guilt worse.
These things are so frightening to me and life just feels unbearably difficult at the moment, particularly as these problems are likely to stick around since endometriosis is a chronic condition with no cure. I’ve been crying a lot since I received my diagnosis, I think you’d be alarmed if you saw how much: all through the night, in the shower, at work in the bathroom, at my counselling sessions (I’m seeing a counselor- did you know that?), everywhere. I’m crying writing this. It’s why I work at home most of the time now- so people don’t see. My counselor thinks I have depression, and I probably agree. I think I am mourning the loss of the person I used to be. Remember her? Always the first to a social event, always laughing, super fit, and dreaming big for her future. I’m not that person anymore, and having endometriosis means I am going to have to change the way I do things sometimes. I need to live at a slower pace, but I won’t allow it stop me altogether. I’ve been feeling so alone with all of this fear and grief. Like nobody else cares about it. At times these feelings have overwhelmed and incapacitated me- I know how melodramatic that sounds but I need people to understand how just getting through each day is an immense physical, mental, and emotional challenge right now.
But I don’t want to feel this way anymore, which is why I am telling you all of this, because I know you care and wouldn’t want me to keep going on by myself. If you can find the strength to stand by me while I try to get to get the treatment I need to get back on track with my life that would mean so much to me. Perhaps you could come and visit me at home sometimes- especially when I am feeling too low or unwell to leave the house? If not, maybe we could chat on the phone- so I know you are there and thinking about me from time to time? At the very least, please don’t be offended or annoyed when I don’t turn up to social things or cancel at the last minute, it’s hurting me more than you that I can’t be there. When I am feeling well enough, I promise to be there with a smile on my face every time. The little things will make a big difference to me. And the same goes for you- I will promise to do my best to stay in touch, and am always here to talk if you need to. Things haven’t changed in that way.
Thanks so much for reading this letter, and I am so sorry that I didn’t have the courage to say this to you earlier or to your face. If you have any questions I would happily answer them any time. Questions show me that you are thinking about me and want to help. I think everyone has been to scared to ask me any-maybe because they want don’t want to upset me- but I’d love to talk about it with you if you feel able to.
All my love as always,
What do you think? How did you tell people? Any further wisdom in this area much appreciated. Also, I haven’t talked to most of my family about it yet- so advice on that topic welcome too.