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Elephant in the room

15 July 2015

Thanks to everyone who's taken the time to read my first blog, and especially to those who took the time to comment. I love that I'm not alone in the MS closet, it's nice and cosy!
The topic for my second blog post was a simple choice for me. I feel I need to address the 'elephant in the room', not so much because I have to, because I want to. I want to get it out of the way early on so I can focus on the many other topics swirling around in my head. Although I briefly mentioned this issue last week, I feel it's important to dedicate a single post to such an important decision.

My decision not to share my diagnosis with my family, and only with a select few friends, is something I certainly didn't take lightly. I spent many hours worrying about, and considering, this decision, with help from the friends I have told, my partner, my neurologist, and my psychologist.  When it came down to it, I was the only person who needed to be comfortable with my choice, and that I am.

Some friends expressed surprise and judgement about my decision, but as I expected, these were people who would be comfortable screaming their medical history to the world! While I don't pass judgement on them for such an approach, I certainly didn't appreciate their judgement on me for such a personal choice. This is a very personal choice that should be respected by everyone.

The last thing I want from my MS is for it to cause people worry and stress, while creating a pity party for one! At this stage (and I know I keep stating this) I'm happy with the support of good friends and the comfort I feel through protecting my family. I'm sure I would be taking a different approach if I didn't have a supportive, loving partner, and a really good support network of friends and specialists.

It would be interesting to hear from others who have chosen (because they can) to follow a similar path, and what the benefits and challenges have been surrounding this. For me, the benefits of protecting my family from worry and fear far outweighs the odd day when things are bad and I'd just love some reassuring words (and a big hug!) from my family.

I realise that for many with MS they don't have the choice, and I see that removal of choice as very unfortunate. Perhaps there will be a point when I'll no longer able to 'hide' my MS. If it does come to that point then obviously I'll have to decide on the next step. Believe me, I've thought of every possibility; pretend I'm newly diagnosed, be truthful and explain my reasons for not disclosing my MS, the list goes on. But I try not to project too far into the future with the 'what ifs' because they may never be.

I might talk more about these 'what ifs' next time, but until then, thanks for reading it means the 'elephant in the room' can kindly move on now.

Have a great day!
Cheers,
Sam

Comments (9)

Thanks so much for articulating the thought processes behind your decision, Samuel. You make some great points, including covering how difficult this decision is for those of us who have the option of not being "out" about our MS. Great post! I was firmly in the MS closet for my first few years, but have become much more open as time goes on. I sometimes feel quite guilty that I'm not fully out, as I could probably be a better advocate for the MS community if I were. But, like you, there are people I am aiming to "protect" with my decision making. For me it is the patients with chronic illness who I care for and who I think it would cause a great deal of distress if they found out. But one of my most strongly held beliefs about disclosure (of any health issue) is that it should always be about the person who has the illness and their needs. You have articulated this so well! You have the support you need right now, you have made the decision that is right for you, and you only seek respect for your decision from those you have chosen to confide in. Well put - thank you!

I am on the other side of the coin with this. Which I won't elaborate too much because it is actually my next blog post. :-) Though you are right it is very much your choice and the people around you will hopefully understand your decision if and when the day comes to share it.

Wonderful. Very well articulated and insightful. Hopefully you won't get to a point where you need to disclose. Thankyou.

I decided to tell people here and there - as I so feel like it - to be a great thing, because it helped me get through it. But, I also feel like it's one of the few thing about MS that we're able to control. We can only do so much to control progression, or the effects that it has on us. It has a pretty hefty power over everything. So if you want to control who knows this about you, you should never have to feel the need to justify that decision. Stick to your guns, because you're awesome and no one can tell you otherwise. =D

Very true TPOE - I hate that the choice to tell people is taken away from so many people. I feel that my justification was possibly more for me than anyone else, but now it's done I can move on to more topics for the blog which I'm really looking forward to! Great to read about your experiences too!

My point of view is this...YOU'RE the one with the illness...YOU'RE the one who is affected by this...so it is therefore, YOUR decision on who you choose to tell or not tell. Plain and simple!

Thanks Rachael - unfortunately some didn't see it as clearly as you- but you live and learn! Thanks for the comment :)