Disclosure: why I decided to speak up about my MS

January 4, 2018

MS disclosure - cropped

To speak or not to speak – that is the question! After the initial shock, disbelief and fear wear off, a fundamental question that most people newly diagnosed with MS face is, “What do I tell everyone?” As with most of the big questions in life, there are no easy answers when it comes to disclosure. The question itself is such a subjective one that the answer almost certainly will vary from one individual to another.

When faced with any challenge or change in life, by and large reactions can be grouped into two categories. Some who are inherently private individuals may prefer to hold their cards close to their chest. They may let a few close friends and immediate family in on their secret but they may not wish to speak about it to the rest of the world. There are others who find a sense of relief in speaking about their difficulties.

I belong to the first category of individuals – the private ones who hug their cards to their chest. So when diagnosed with MS, very few people knew about my condition. For the rest of the world, it was business as usual. If you are of the same mindset, you may find this piece interesting.

A little introspection goes a long way and, as I am writing this, I ask myself why I hesitated to speak up in the initial days after the diagnosis. It was for numerous reasons, the two most important ones being I didn’t want to be treated differently and I didn’t want to be pitied. I also didn’t wish to face a barrage of endless questions about my condition.

In my case, speaking up about MS calls to mind an analogy of the slow blooming of a bud into a flower. Initially, a few core people who were very important to me knew about my condition. But as time went by a great weariness came over me. You see I was tired of the incessant questions;

“Why don’t you have a drink anymore?”

“Why do you look so tired?”

“Is there anything wrong?”

“Why don’t you go out as much as before?”

“Why do you avoid going out in summer?”

I was weary of dodging these and a million other questions. And, eventually, I felt like a fraud. I felt as if my whole life had been turned into one big lie. That’s when I realized one of the fundamental facts of life: to cover up one important truth, one may need to speak a million small half-truths and white lies.

There was a dissonance in my life between who I was and the person I was projecting to the outer world. Soon this dissonance became a palpable thing and I felt an overwhelming urge to speak up. That’s when I started telling people about my condition. It was a slow process and it didn’t happen all at once. The telling of it calls to mind the analogy of working your way through a maze – you start from the innermost section of the maze and work your way outward. Similarly, I started with those who were close to me and worked my way outward.

It wasn’t easy and I faced a myriad reactions ranging from shock to disbelief. When I saw tears well up in the eyes of a close friend who had put two and two together, done a bit of research and pieced together what was wrong with me, I was touched to the core. Of course there were also a few insensitive remarks along the way and it is never easy to deal with such comments. But then what kept me going were the countless caring hands that surrounded me in the form of the wonderful family and friends I was blessed with.

Along the way I realized that telling people about MS required both strength of mind and courage in equal measure and, with passing time, I aim to acquire enough of both to shrug off insensitive comments and not allow them to bother me.

Today, two years after my diagnosis, I realize the value of authenticity. MS is an indelible part of my identity. It is part of who I am. And in speaking of it, I have learned to separate the grain from the chaff. Today I stand tall in the knowledge that I know who my friends are. Those who accept me for who I am, I cherish and hold close to me. If there is one thing I have learned from MS, it is to value my friends. They are my biggest support systems in helping me battle MS. Of course there have been others who find it hard to accept my condition; some have been insensitive to what I go through; some have shown sheer indifference. I have learned that such people are best kept at a respectable distance in life.

Speaking up about MS was in many ways cathartic – almost like a cleansing ritual. Writing about it is even better. It isn’t easy to put one’s private life out there into the universe for others to discuss and dissect. But if, in writing and speaking about it, I can help even one person who is similarly affected or perchance affected by some other issue in life, do I really have a choice. Of course I don’t.

Today as I write this piece, nestled in the safe little cocoon of my favorite sit-out and watch the mellow sunshine slanting in through the trees casting sun-dappled shadows on the plants surrounding me, I feel an overwhelming sense of peace and well being. It feels good to be out in the open writing this piece; it feels even better to be out in the open about my condition. Yes there have been brickbats and fall outs but there have also been countless caring hands that have reached out for me each time I stumble. And it is these caring hands that make life immensely worth living.

Zia Marshall

Note: This blog is written from the author’s own personal experience and focuses specifically on disclosure to family and friends. Disclosure in the workplace is a more complex matter that you may choose to handle differently, depending on your unique circumstances. For medical insurance, disclosure may be required for any claims to be valid however, the specifics can differ from policy to policy.

10 thoughts on ‘Disclosure: why I decided to speak up about my MS

  1. I had to tell public people ie like at the grocery shop, I can no longer carry heavy bags of groceries..I felt people’s eyes on me sometimes when I walk funny, as if drunk, haha. It helped me to open up, accept my condition, hopefully it will help others to understand and have more acceptence of people. I find people respect me for my can do attitude even when it’s those times I cannot quite pull it off! Because it’s a hot day! THANKYOU for sharing with us, I find great comfort in reading people’s stories..helps me to find a new normal ah so my symptoms are same as others..no need to PANIC! So much. Cheers, have a wonderful year, full of giggles and nice surprises ❤️😇😍🌠🍀

    • Such a relevant article, thank you. 3 and a half years in and I have told very few. Only immediate family and my boss at work which was filled with trepidation, only to have her say “well, we’d better make sure we look after you”. Simple words that meant a lot.

  2. Am sat in my car having just read your piece. This was very inspirational and I want to thank you for being so authentic around your journey. I’m 8 months in after diagnosis and on a day to day basis I ponder this question- do I tell them or not OR should I tell them or not ? On the whole my answer has been YES and now I feel I have moved towards acceptance of my condition and given myself the permission to STOP when my body needs to Stop… It gives my great comfort to read other people’s experiences too. Here’s to a year ahead of renewed strength and ❤️from the world around you.

  3. Thank you for sharing. It took me about 10 years to decide to speak out. It was especially toward myself, my body. In a way this means accepting, and not negating, the “message” my body wants to make me understand. I am an associate researcher without a permanent job, and a friend in my research group asked me, if I do not want to be a full researcher. Then I told her that I have MS. She was a bit shocked, but then told me that there are positions, and a quota, for handicapped people. If the quota is not fulfilled, the Institution need to pay a fee. That was last June (2017), and now I am taking all the measures to apply for a handicap position: recognized to be handicapped, discussing with the director of the institution, writing my research project,… I am just in-midst of that subject. I am confident to get such a job. That what be a recognition of all I do.

  4. I told my boss at the time about my diagnosis 2 years ago and a couple of days later I was told I wasn’t needed at work anymore!!!! I had worked there for 2 years! It was a horrible time, first getting sick, then the diagnosis and then losing my job. I have not heard from any of my work ‘mates’ after either. You think people are your friends, you see them and talk to them every day and go out for social things together too and then in a blink of an eye the whole company ‘dumped’ me. I’m more careful now who I tell and needless to say I haven’t told my new employer about my condition.

  5. Lovely blog. I held the knowledge that it was “highly likely” that I had MS close for 7 years. Only a my closest friends and immediate family knew. It wasn’t until I found OMS, a couple of months after being told that I definitely did have MS and started the lifestyle, that I started to tell people. I am blessed to have very caring and supportive friends and family. Once, when visiting my home town a friend told me to come round and gatecrash her dinner party. She cooked a 3 course OMS friendly meal for 6. Everyone complemented her on her cooking and no one knew why she had cooked the meal she had!! I even managed to tell my Granny whose knowledge and experience of people with MS was not positive. She always encouraged me and used to ask, ever time I called her “are you sticking to that diet!” I think those might have been her last words to me. I found it hugely liberating knowing I am no longer living a lie with the people I care about most.
    Work is a different matter but after 3 years am beginning to tell people.
    As the opening of this piece stared, everyone is different. There is no right or wrong, just what is right or wrong for you.

  6. I’m afraid at the beginning of my experience of MS I was badly let down by a GP,a nurse at the hospital, the person I was engaged to marry, and even family who couldn’t cope with the secret. It’s probably fair to say that I’d had an almighty chip (log?!) on my shoulder from day one. The nurse at the hospital told a visiting friend(?) she had assumed was my fiance that I’d had bad news. I had a seizure within the year and at the A&E department one of my practice GP’s asked my mother in front of a waiting room full of people “When was she diagnosed with the MS?” My fiance decided on the anniversary of the diagnosis that he was leaving me, telling others about the MS and my mother had a very persistent and intrusive employer wheedle the information out of her as to why she was upset. I have been on a mission to keep my condition to myself from ninety five percent of people. Yes it’s hard work and awkward but as the option was taken from me at the start I want to feel I have some kind of control over who I want to allow into my personal business. To be honest admitting to having such a condition to me feels like admitting to a weakness and if I make an error – forget something for example – ‘Oh that’ll be the MS’ would be pounced on. That and the humiliation of some of the symptoms I would rather not share. 24 years on and I’m still trying to disregard it’s existence… Not healthy is it….?!

  7. I suppose that for some it depends on how the MS manifests at the start. If you have a “dramatic” presentation of symptoms, it is harder to not reveal. For me, not having any family support meant relying on friends. Thank goodness for good friends.

  8. About 14 years ago I had an event where one side of my body felt no temperature and the other side was weak and I could not use my left arm. But I recovered fast and the MRI did not really show anything major. I have always been seeing doctors for uveitis though, and recently I had severe optic neuritis, MRI, and they have used the term MS. I decided to keep it secret, but then on my last day of IV Prednisone the nurse was someone I knew very well 25 years ago, who still knows a ton of my friends and is very enthusiastic about getting together again. I took that as a sign that I need to be open about it and ready to ask for help and understanding.

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