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Tuesday

 

MS: Why I decided not to hide my illness away after being diagnosed with an 'invisible' condition




























'Writing about your condition feels a bit, I imagine, like coming out – there’s no going back' Teri Pengilley

It’s a funny thing, being diagnosed with a chronic illness. During the lengthy diagnostic process, all hell breaks loose – rows, guilt, recriminations, bad-taste jokes (all made by me), brave little smiles, not-so-brave wailing sessions down the phone to my very patient friends. Seeing your parents cry. Declarations of love (two). Lots of well-intended cake.

And then it all just stops. You get your diagnosis, start the medication and life goes on.

I was diagnosed with relapsing-remitting multiple sclerosis after tingling in my limbs prompted me to get some tests done. After six months of MRIs and a lumbar puncture, I began treatment in the summer of 2012. MS is an autoimmune neurological disease that affects 100,000 people in the UK. In the course of the disease, the protective coating around nerve fibres becomes damaged, causing a range of symptoms – including limb numbness, loss of balance, tremors, vision problems, memory problems, bowel, bladder and sexual dysfunction, and problems with speech or swallowing. Relapsing-remitting means that attacks come before a period of remission, although the nerve damage is cumulative and the disease can evolve into secondary-progressive, where there are no periods of remission. It is currently incurable, but advances are being made all the time, and there are a number of drugs available to help prevent relapses and manage symptoms.

Of course, most diseases have a wide spectrum when it comes to severity. I can count myself lucky, because for now, life is going on largely interrupted. My relapses since diagnosis have been non-existent, or at least too mild to even register. I run a few times a week, drink too much wine with my friends, spend too much money on shoes. I have a full-time job, worry about property prices, leave the house with wet hair, browse Tinder with morbid fascination.

Once people realise that you are, in fact, OK, and no longer a tragic heroine, the drama of the diagnosis quickly fades. The declarations of love were hastily rescinded, and the supply of cake dried up. Friends and family, mercifully, have stopped asking me how I’m feeling with that concerned head tilt. Living with MS, especially before you show any outward symptoms, becomes something private, almost stigmatic. I know it’s there, lurking in the background, but no one else would ever know. Part of me is relieved that the fuss has died down. But another part of me, strangely, misses the attention, the drama of it all. After the visitors stopped, it was quite lonely as I struggled to deal with injecting my new medication, privately panicking that every twinge or ache was a new symptom.

Advisers and nurses told me to look at being diagnosed as a type of grieving, with seven stages. You are grieving the life you used to have, one said, rather unhelpfully. I definitely touched on some of the stages – shock, anger, guilt and depression all got a look in. And getting to the acceptance stage is a matter of trial and error. During the endless stream of testing, I made jokes to relieved friends, horrified parents and baffled doctors. During an eye scan to test my brain-reaction time, where my friend Jane watched with fascination as various parts of my brain lit up on a monitor, I queried, “Does my brain look big in this?” (which I immediately vowed would be the title of my memoir). A clumsy quip I made in the car with my dad – about parking becoming much easier in years to come with a disabled sticker – was met with perhaps the most reproachful look he had ever given me (and I’ve had quite a few). And when a team of doctors in Dublin’s Mater Hospital said they’d like to rule out lupus, I gleefully quoted Hugh Laurie’s Dr House with “It’s never lupus!” – resulting in five blank stares and a few surreptitiously scribbled notes.

Comedy was out then. Keeping it a secret wasn’t much of an option, either, especially after a few bouts of hysteria in my office following a fraught phone call or exchange. But whenever I mentioned it to people, no matter how casually, the news was received with, at best, mild horror. One poor pal of mine to whom I casually mentioned it on a walk home started laughing, before he realised I was serious.

On moving to the UK from Ireland, I decided I was going to start again, not mentioning the condition to anyone. Not as easy as you’d imagine, even when in rude health. Travelling was a nightmare – on one occasion, in a regional Asian airport, I found myself tearfully arguing with security over my sharps bin full of my used daily injectables, while some relatively new friends looked on in bemusement. Once I finally made it through, with minutes to spare before my flight, I thought it best to explain that I had MS, something that might have been easier if it wasn’t a secret in the first place. In the workplace, bouts of fatigue meant periods of extreme crankiness and poor performance, something I could perhaps have accounted for if I had told my colleagues straight out that I had a manageable, but serious, long-term condition. I found myself in the strange situation that, while my yoga instructor knew about my condition, people I was forging new relationships with had no idea.

So I started to mention it, as casually as possible, to new, trusted friends. The reaction I got this time was of understanding and interest – maybe my delivery was getting better. Slowly, I began to think of having a chronic condition as, although not ideal, something of a badge of honour, and just a very small part of the person I was. In a way, I nearly have an edge over others – a crystal ball, or the power to skip to the end of the book. It may not be a fun ending, but none is – at least I am luckily enough to take medication and make lifestyle choices now to delay the onset of the illness. It has spurred me on to think more about my long-term health, and my diet and fitness levels are better than they ever were before. I am also more focused on my long-term goals – the diagnosis prompted me finally to take the leap of moving to the UK, to travel solo, to consider whether I want children. For all the uncertainty that a chronic diagnosis can present, my life feels far more focused, secure and, yes, happier than before.

I also realised that I wasn’t alone: once I had confided in friends, a great number of them confided back that they had their own invisible crosses to bear – physical or mental health issues, fear over family conditions, struggles with stress or relationships. This was perhaps the great eye-opener for me. Everyone had something. But most of them were alone with it, or at least believed they were. We fuel our own stigmas, hushing up a disease until it becomes too obvious or severe to hide. Until Jack Osbourne revealed his diagnosis in 2012, I had never heard of a celebrity with MS. In The West Wing, President Bartlett conceals the fact that he has MS, and is later accused of being fraudulent because of it. I knew of wheelchair-bound distant relatives with the disease, and heard horrific stories on the news of sufferers in the later stages of the illness pleading with the courts for permission to end their lives.

Perhaps this is why it’s so odd, so strangely scary: I am walking strong, in seemingly perfect health, so have no right to moan about my plight – but I have no idea where the future will take me. If celebrities and people in prominent positions spoke up about their experiences of the illness, perhaps it would shed light on how much the illness varies from person to person, and dispel some demons. Michael J Fox’s battle with Parkinson’s has been sometimes hard to watch, but it is heartening to see he is still working, and still leading as normal a life as possible. Angelina Jolie’s revelation that she had had a preventative double mastectomy and later a hysterectomy did wonders for raising awareness of the BRCA1 breast cancer gene, leading to a doubling of NHS referrals for the test.

Of course, it did occur to me that, although not necessarily a prominent person, as a writer I had a platform for my story – and that perhaps I could dispel some fears for other people. This is how I came to write this. Writing about your condition feels a bit, I imagine, like coming out – there’s no going back, really. A potential employer, with a quick Google search, is likely to come across this article and think twice before hiring me. A potential partner may have second thoughts about a second date after a quick cyberstalk. To some, I might become “that woman with MS”. Even more than this, I wondered whether I had a right to tell my story. Other people have suffered so much – I’ve never had much beyond a bit of a limp. Why should I whinge about my life when it is, in fact, a pretty charmed one?

But also, I know that, just as everyone has their own private struggle, everyone is far too busy dwelling on their own lives to let someone else’s take up their thoughts for too long. And if some of the Google searches are done by a scared, newly diagnosed twentysomething, then it might just do some good. If that’s you, my advice is give it time – within a couple of months you will be OK. For now, wail as much as you need, lean on friends and family, and revel in the declarations of love. Make bad jokes if you must. Then talk to the professionals, get advice on medication. Life will return to relative normality. Just make the most of the cake while it lasts.

Story Source: The above story is based on materials provided by INDEPENDENT
Note: Materials may be edited for content and length


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