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‘In the MS closet’

19 June 2015

As a 30-year old male, I only ever thought I’d have to ‘come out’ the one time. After my teen years were dominated by feelings of fear and worry at the reactions and judgments I may receive by being honest with my sexuality, I came out in my early twenties, with much more acceptance than I had first expected.

After a 2013 MS diagnosis, I am back in the closet to some extent. While I am happily partnered, and out and proud with my sexuality, I must now consider another coming out journey… with my MS.

The fact I wish to remain an anonymous blogger, tells the short version of my decision to stay in the MS closet. Only a handful of close friends, and, of course, my partner, are aware of my diagnosis. Luckily for me, at this stage, my symptoms are invisible and my mobility is unaffected so it’s been quite manageable so far.

My decision to stay ‘in the closet’ has been met by some disapproval from only a few friends, which has been an interesting way for me to reassess my circle of friends. After much discussion with friends, my partner, my neurologist, and my psychologist, I’m comfortable with my decision, but I do acknowledge the discomfort that I sometimes feel when I need to think on my feet with cover stories and fatigue excuses. More on that later!

I smile to myself every so often, as these stories and excuses remind me of my days in that other closet; when I was going clubbing, exploring the scene, and attending support groups. While now my creative excuses are for the sake of going to specialist appointments, exploring bladder control workshops, and attending support groups, I do have my reasons. I'm looking forward to sharing these reasons, fears, and hopes with a wider audience through blogging, which I see as an opportunity that will benefit not only to me, but also to those who feel they are a minority within a minority of the MS Community.

Comments (16)

"Cover stories and fatigue excuses" - I hear you! But I think it is really hard for young people in their 20s and 30s to comprehend what fatigue feels like. (Even harder for my own offspring when Mummy needs a lie-down. Again.) Looking forward to hearing more about how you deal with these issues.

Hi Sam, I'm looking forward to your thoughts on why you felt comfortable about coming out about your sexual orientation, but not MS. I've reached the stage where it's impossible to pretend that I'm not ill, but for you, I sincerely hope that things never get to that stage, and you can stay in the MS closet forever if you want!

Love your blog Samuel . I understand why you wish to keep your MS in the closet. There is unfortunately in today's world a rather large stigma attached to being unwell and having MS. It's interesting that society is more willing today to accept people's different sexualitys than an illness?? Look forward to your next blog.

Thanks for the comments so far :) Although I'll go in to more detail in future posts, I must admit that my reasons for staying in the 'MS closet' aren't actually around stigma but they are more so around protecting my loved ones from worry. I have no doubt I would receive the same (if not more) support coming out of this particular closet, but I'm also realistic about the level of stress this second coming out would cause, which would in-turn create stress for me. Looking forward to sharing more with everyone!

That makes a lot of sense, Samuel - thanks for articulating it so well. As someone who is very much "out" in most contexts, but "not out" in just one (my patients are not aware of my diagnosis) I think I understand where you are coming from. The part of me who wants to be an advocate and improve understanding of MS in our community would love to be completely open, but the other side of me wants to protect my patients from the distress my diagnosis would cause them, at least as long as my MS is not obvious to others. Here's hoping this platform proves to be a great advocacy forum for both of us while still avoiding upsetting those we worry about!

Thanks for your thought TUO! You're so right- it's such a conflict when you want to help raise awareness of MS. I feel this platform is perfect as I can remain anon but also raise awareness! Thanks again!

It sounds like you have a great support system around you, and even though I am well out of the MS closet I so understand you reason for remaining within. There have been times since I was diagnosed that comments have been made to my husband which have been insensitive and unjust. It is so hard to protect them and ourselves at times. Look forward to reading more :-)

The closet with bladder control workshops sounds like a real dud compared to the one that involved clubbing! Thank you so much for your courage and honesty, and sharing your experience of being a minority WITHIN a minority, Samuel. Looking forward to hearing more about your journey ahead.

haha yes certainly VERY different reasons for my cover stories these days Pilgram! Thanks for your kind comments, I look forward to sharing more and also hearing more from you.

Wonderful! You've got great perspective on it all. I kept my MS monkey in a closet for years. It was invisible so I figured 'Why worry everyone? I'm handling it.' Only needing a walking stick and dealing with nosey parkers made me come out. Both sides worked okay. Follow your heart. It seems to be leading you to the right places. :)

Thanks so much for your comments Tim, it means a lot to me. I actually bought your book "Carry a big stick" about a month after I was diagnosed in 2013 (the same month the book was released!). It was such a comfort to read about someone else's experience with keeping the "monkey in the closet" as it made me realise that this was a valid option for me to take up, as I have done. I also had a similar experience to you with the wonky eye during a relapse, but thankfully I wasn't faced with trying to hide it on a national TV show !! You certainly had your work cut out for you. Thanks again for your kind words and time.

Hi Sam! I believe we've already met - on Twitter. I'd love to hand you some form of symbolic lighter fluid and tell you to burn that closet to the ground... but at the same time, I also want to tell you that I understand what you're doing and why. I will say, also, that you're awesome, you're going great, and I love love love that you are unapologetic about the important decisions that you make. That, my friend, is excellent. Good on you!

Thanks TPOE :) Enjoying your tweets, and thanks for the comment. Thanks for your understanding, I'm sure one day I will have a 'Coming out- Take 2', but at the moment it's really working for me. Thanks again!

I completely understand and support your decision to "stay in the closet" with MS. It shows what a selfless and considerate person you are, you must love your family and friends very much to put their worries and fears before your own and your illness. What a brave decision...You should be commended :)

Oh what a lovely comment- thanks Rachael :) You're right, I love my friends and familySO much, I'm glad that that has come across in my posts. Whenever I think about telling my family, I get all teary, so I think that's a fair indication that I've made the right decision! Stay happy :)