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Disclosure: why I decided to speak up about my MS

Is it the right decision for those with multiple sclerosis to tell people that they have been diagnosed with the disease?

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?"

A fundamental conundrum

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.

An introspective period

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.

The truth will out

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.

Working my way through the maze

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.

The value of authenticity

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.

A responsibility to other MSers

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.

Out in the open

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.

ti 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.

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