Tag Archives: friends

It’s all me, me, me

Having multiple sclerosis, just how hard is it to show sympathy to people who are a little under the weather but who make a lot of noise about it? Has MS made me less compassionate, and do I somehow think no one else has the right to moan to me about their own troubles?

I only ask as two friends and The Teenager have recently been struck down by a bad cold. All three are male, so naturally ‘man flu’ has been mooted as a possibility, but to be fair, they do seem very poorly and I am trying to be sympathetic, listen attentively and give helpful suggestions. I care about these people and hate to see them ill.

But a teeny-tiny-little part of me thinks it’s a bit like expecting a poor person to empathise with a rich guy when his Porsche is in the garage for repairs. Sure, it’s an inconvenience, but it’s temporary and normal service will resume soon enough. I feel like saying, ‘ill? You’re ill? You want to see what ill is?’ How awful is that? What sort of person am I, to even think that?

I have bored my friends to tears over the last year, constantly dissecting symptoms to the nth degree, analysing lesions and spilling out my fears for the future. They have sat with me through a merry-go-round of appointments, held my hand during MRI’s and kept my glass of wine filled. So I feel very small-minded to begrudge them that little bit of extra attention and help when they need it. I have offered to drive 18 miles through the rain to bring supplies to one friend and have tucked The Teenager up in bed with a book and hot Lemsip. This is one battle the MS Monster won’t win. MS may be for life, but so are friends and family.

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The Loneliness of the Long-Term Diagnosis

Since being diagnosed with multiple sclerosis, I have never been surrounded by so many people (usually of the medical variety) yet felt so utterly alone. Bereft, cast out, somehow ‘other’. Just over a year ago, I was living a fairly normal life, doing fairly normal things. Sure, we all feel different at times, a bit lonely, a bit out of the loop, but with any luck, we soon gather ourselves together and re-join the masses.

Being stamped with an indefinite diagnosis however, permanently removes you from normal society, whether you like it or not. I felt a sense of shame ‘admitting’ my diagnosis to friends and family and was angered at their awkward, embarrassed reactions. Perhaps the slightly musty, old-fashioned image of MS does not help matters, despite it technically being a young person’s illness. Wheelchairs, catheters, trembling and paralysis were the most common words mentioned by my well-meaning friends along with the horror on their faces as they briefly considered the scenario of wheeling me to the park, wrapped in a tartan blanket to feed the ducks.

How to describe the aching loneliness of waking in the early hours of the morning, rigid with fear? Or the recurring thought: This. Cannot. Be. Happening. To. Me. But it is happening, and each new medicine, neurology appointment, MRI scan, blood test and flu jab add another thin layer separating the me now from the me then. My life was tossed up into the air one day last year and as it has fallen back down, there is a new order, a new symmetry and system to my life. Normal life must fit around appointments, fears and anxiety must be measured against reality and worst-case scenarios, and precautions taken.

I have lost friends. They simply peeled away, apologetically. I have made friends with the deep fears in my mind. I have faced up to them, stared them down, but still there is the gnawing loneliness. Or is it simply facing up to life as it really is? Unpredictable and utterly random.

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