Coming Out of the Disease Closet – The Challenges of Chronic Illness

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“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.

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11 Comments

  1. Jordan,

    You wrote, “I have stage IV endometriosis, thyroid disease, chronic migraines, weird allergies and narrow angle glaucoma”.

    I also have ALL of those things, and I have been diagnosed by traditional MDs (via observation, testing, and surgery) as having all of those issues…

    BUT —and this is why I’m writing this comment to you

    (which I hope you will see, since your post here was published 2 years ago) —

    the “early-onset” and “normal-tension” glaucoma that I supposedly had, which was diagnosed by an opthalmologist, who simply gave me eye drops to treat it,

    actually ended up being something entirely different — nothing to do with glaucoma…

    After I experienced two more years of symptoms, I went to a different eye doctor, who immediately gave me an MRI scan, and found that my strange vision loss and neurological symptoms were due to an extra-large pituitary tumor that was compressing my pituitary gland, the stalk leading to the hypothalamus, and up into my optic nerves. I had to have the tumor surgically removed.

    I also had very large ovarian cysts on both ovaries, which had to be surgically removed.

    I think these issues and symptoms (the ones which you and I both have) are connected, and probably have a genetic and environmental basis to them. It’s probably a constellation of symptoms/diseases/maladies that often go together in a small percentage of women, including us. (And, I suspect, my long-departed grandmother, who relatives tell me had similar symptoms to mine.)

    I am twice your age, but the diagnosis of glaucoma for me was still considered “early-onset”. Therefore, if you are just 21 and have already been diagnosed with glaucoma, that seems pretty young — and if it’s not “proven” to be glaucoma (however they might prove that), but instead is just the best guess of your eye doctor (which my initial eye doctor’s diagnosis of “glaucoma” was for me) — and if you have other symptoms that might indicate a pituitary mass (or other kind of mass in the brain) is pressing on your optic nerves — you might look into getting an MRI scan of your head to rule out the possibility. (If recommended by a doctor, and if it’s covered by your insurance plan, it usually doesn’t cost too much out-of-pocket, maybe $150-200.)

    Large masses in the pituitary area that are left untreated can grow further, and/or even rupture, which can cause sudden blindness.
    (After I had my pituitary surgery, that actually happened to my dentist’s nephew — he developed sudden blindness due to the rupture of a previously-unknown-about pituitary tumor, which harmed his optic nerves.)

    Not to mention that they can cause NASTY HORMONAL UNBALANCES and SWINGS in the whole body. Hypothyroidism is just one way that pituitary tumors can screw up the endocrine system.

    Another thing I’d like to suggest to you is to have your MTHFR genes tested — you can do this a few different ways — the saliva genetic test by twenty-three and me is probably the least expensive (you can learn how to do it by searching online) — but I was suspicious that I had MTHFR problems so I tested myself several years ago with twenty-three and me (and later one of my surgeons tested me for it “officially” and got the same result) — I am “compound heterozygous” for MTHFR, and this seems to have a lot to do with a number of my symptoms and health issues. There are some simple things that people can do to lessen the health problems of having MTHFR mutations, so you might want to look into this as well. It’s definitely a big piece of my health puzzle.

    I do hope you still check the comments here –
    Take care and good luck!

    1. DM, you present the most interesting health story. Given the difficulties in diagnosing many women’s health conditions, but most something so unusual (or is it?) as a pituitary tumor, I wonder if you might consider sharing your story in blog post where it would reach other women who might share similar symptoms and are having difficulty getting an appropriate diagnosis. If so, send me a note via this link: http://www.hormonesmatter.com/write-for-hormones-matter/. I am certain your story could help other women.

  2. EXPOSE THE TRUTH…TELL EVERYONE…WITH TECHNOLOGY WE CAN REACH SO MANY …AND STOP THIS MADNESS. ABOVE ALL PRAY TO GOD ALMIGHTY…WE ARE HEADED FOR EXTINCTION!

  3. Jordan, writing to say that I was moved by your article. I was 36 when I became ill with Crohn’s Disease, so later in life. Most people didn’t know I was sick until I got too sick to show show up to work. Like you, when I felt well enough to meet people for coffee I did, and they didn’t know I had spent the first couple of hours in the day near the bathroom.

    I met my husband during a relatively long period of remission – about 19 years ago – so I don’t remember when I told him. I do know that within 18 months I was in the hospital so it was probably a year when I became symptomatic. I’m sure I told him before then, but I don’t think it’s first date material unless you have to explain limitations or actions.

    I came out, out, never to go back in again when I decided to co-write a book called “Women, Work, and Autoimmune Disease.” From then on, I knew that people would know and I wanted then to know because with the writing of that book (and my latest, Business from Bed) I learned that so many, many women are trying to have a “normal” life and keeping this aspect of life a secret. It’s kind of good and kind of not.

  4. thank you, you write beautifully, it was very moving.
    i dont understand how you do it, i cant do anything when im in pain. wish i could do that too and thank you.

  5. Hi Jordan!

    I know exactly what you mean. I recently started blogging about my experiences of living with a chronic illness since birth. I wrote about the exact topic that you discuss, so your article really resonated with me.

    I think you’d appreciate the article that I just published which is about the difficulty of having an invisible illness: http://josephinebila.com/2013/02/the-problem-with-being-pretty/. Check it out… let me know if you know what I’m talking about!

    Thanks for your post! It was an honest and good read. 🙂

    Jo

  6. I have several chronic illnesses. One of them being endometroisis. The others are asthma, sleep apnea, mynotonic dystrophy, and pelvic pain (from the endometroisis). I knew i was different by age 18. I thought i am not like everyone else. I couldnt even come out of the disease closet because no one would believe me. Not even my family no matter how much pain i was in. Even at work where i was on my feet all day and be collapsing. It wasnt until i was 25 that i discovered that there are a lot of people with the same problems as i have. But i still couldnt come out. Now that im 31tired and am 100%i sure im not being judged, i can come out and talk about it. It also helps that there are a lot of women out in this world dealing with endo just like me. If there are any questions about what i have just said, dont hesitate to ask me.

  7. I don’t know anyone else who has endometriosis so reading all these blogs were I feel people understand me and is going through what I’m going through really helps. People really don’t understand what your going through or how you feel and it can get really depressing. We all manage to go through our daily lives like there’s nothing wrong, we could be in so much pain but we manage to put a smile on our faces and act like nothing’s wrong. There needs to be more information and awareness given to people about this disease, there’s not enough awareness about this disease so people just don’t understand.

    1. I too started suffering from endometriosis at age 47. My insides began to ache at age 45 and my stomach started to protrude. I was always very active and in great physical condition. Then the pain crippled me and I was bed ridden. Went through several Gynecologist looking for answers…and they all said hysterectomy…not one ever mentioned endometriosis. I went in for just my uterus removed and came out with ovaries removed as well which sent me into a horrible menopause. I then developed Graves’ disease. And the gyno who performed the surgery left me to die with no hormones…she told me to drink soy milk. A year later and I am a mere shell…I don’t feel like a person anymore. I’m miserable, lethargic and very sad. My four children have watched me go from an energetic outgoing person…to this horrible state I was left in after being casterated and never told what it would do to me. I believe we as women need to expose the truths behind what the medical community is doing to us. My heart goes out to all of the women of the world….because our lives are so complicated and getting more so due to lies. EXPOSE THE TRUTH!

  8. I forgot to add that I also owned a business, was in a bad marriage and was suffring from horrible nightmares at the time. No anti deprssents ever worked for me. I was under so much stress to hold it all together!

  9. This is a fantastic blog.Thanks so much for writing this. I wonder how much harder or esier it is for people with diseases which are not visible. I struggled with crippling depression for many years, yet still put on the show that all was fine. I got my kids off to school, was invlved in the PTA,held a full time daycare job and went to parties.No one would have known that I secretly felt compelled to end my life every single day.We must be kind to eachother- because we never know the private battles we all face. Everyone just wants to be “normal” and have the life of their dreams.

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