living with endometriosis

“When do you come out of the closet?”

“What?!” I replied, half choking on my coffee.

This question came as my friend, a fellow chronic disease sister, and I were getting coffee and discussing the usual thing topics girls in their twenties discuss, work, friends, boys, relationships, boys, world news, boys, you know the usual.

She clarified; “Say you are dating someone, when do you tell them that you are sick… You know, come out of the ‘disease closet’?”

I took a moment to reflect because it was a good question; oddly worded but nonetheless a good, thought-provoking question.

I thought back to the first time I came out of the disease closet. It was after a few weeks of dating this guy I really liked, who was a bit older than me. I was having surgery in a month and I knew I needed to talk about the surgery before it happened (so it wouldn’t seem suspicious if I wasn’t up to going out for two weeks or so). I very hesitantly told him a brief version of my medical history and the impending surgery. He took a few minutes to pause and then finally after what felt like forever he said “So you can’t have kids.” I was 18 at the time and so my response was “I don’t know I haven’t really tried, have you? I mean who really knows if they can have kids unless they’ve tried.” He followed up with the standard ‘you’re a very brave girl’ spiel and that was the end of that. I think we had one or two more dates after that and then two weeks before my surgery he stopped returning my texts and calls. No explanation, nothing, that was that.

I had (or at least I thought I had) learned a lot from that experience; with the main takeaway being ‘my private matters are best kept private.’ I am 21 now and I have been dealing with health issues from the day I was born. I’m not looking for praise or an award, I just want to live a normal life. I graduated high school with honors, I graduated from college in three years and have found a lot of success in the working world. If I never told you I was sick, you would never know that I have stage IV endometriosis with endometrial lesions growing all the way up towards my liver and covering almost the entirety of my reproductive system, causing me crippling pain at least once a month.

When I am in pain you would never know it. Despite being in pain, I will still meet you for coffee. I will still go to class or to work or meet with a client and there will be a smile on my face, because I just want to be normal. I don’t want to have to come out of the closet because someone somewhere decided being ill is shameful. I have nothing to hide. I have stage IV endometriosis, thyroid disease, chronic migraines, weird allergies and narrow angle glaucoma and I’d wear it all on my shirt if I didn’t think that people would judge me as being ‘lesser.’ I wouldn’t be stuck in some ‘disease closet’ if I thought that I could tell people these things without having them give me ‘sad’ eyes or tell me (or not tell me) they don’t want to date me anymore because I have ‘too many problems.’

But I can’t say all of these things openly because there is a stigma attached to people with chronic diseases; those who are disabled, those who fight their bodies on a daily basis. I don’t get to talk about these experiences, the countless hospital visits, the fifteen surgeries that have made me a stronger, better person because I am stuck in this ‘disease closet;’ because to be ‘ill’ is to be abnormal and we are taught to be ashamed of abnormality.

Its not easy but we all need to stop hiding. No one is ‘lesser’ for being different and no one should be made to feel that way. By hiding, we convey that we have something worthy of hiding, something that we should be ashamed of. I’m not saying to go to the next person you meet and say “Hi I am so and so and I have such and such” because that’s just a different way of defining yourself by your illness. Instead, you should be able to talk candidly about what ever adversities have been thrown your way without feeling ashamed. Through openness we teach acceptance of ourselves and of others. I apologize if that sounds like it came out of a fortune cookie – but its true! I’ve learned that the problem wasn’t coming out of the ‘disease closet’ to others, the problem was I hadn’t ‘come out’ to myself.

If you would like to share your story regarding your personal experiences dealing a chronic illness or telling others about your health issues, feel free to do so in the comment section below. Or write a blog for Hormones Matter. If more women would come out of the disease closet maybe we can begin the long journey of curing some of these often invisible illnesses. Come out of the disease closet.

This post was published previously in February 2013.

Related posts:

Shattering the Mirror: Becoming More Than the Reflection of a Disease Dysautonomia and Chronic Illness Post Brain Surgery