Page last updated at 09:05 GMT, Wednesday, 27 May 2009 10:05 UK

Living with a hidden illness

By Alison Potts

Many people - including colleagues and friends I have known for a long time -do not know I have MS.

Alison Potts
Alison found the effects on her writing skills the hardest to bear.

Even those who do admit they often forget.

You can't tell by looking at me. I am active, productive, a busy working mum with a wide circle of friends and until very recently had a successful career in the media, spanning 20 years.

I was diagnosed 15 years ago at the age of 27.

I never consciously took on a policy of non disclosure, but my instinct told me to try and carry on my life as normal with as little reference to the illness as possible.

I was grossly underestimating MS but I had no sense of what I was going to experience.

I was young, recently married, involved in a career in a highly competitive industry and with plans to buy a house and start a family.

I was making new friendships and working relationships all the time and I didn't want MS to dominate their view of me. I didn't want sympathy or pity or judgement.

And thus I lived my life with an invisible illness. And although it framed my life totally - to the outside world, it just wasn't there.

'Crockery never lasts long'

The boldest outward evidence of the disease appears in my MRI scans, but no one sees those.

Together they tell the story of the last 15 years, each one showing an increasing forest of lesions in my nervous system - tiny white pin pricks running up and down my spine, like the mangled sheath of a damaged electric cable interrupting the flow of nerve signals around the body.

They are the roadblocks on the map of my life.

The kind of MS I have does not cause paralysis or hinder my mobility.

It's difficult to communicate how the mind of a highly intelligent person can completely stop functioning and pretty much become a vacant space.

On bad days I do have problems with balance and dizziness and numbness in my hands and feet. I have difficulty doing up the buttons on my five year olds clothes and everything falls through my hands.

Crockery and glassware never last long in our house.

My main symptoms are hidden. The most prevalent one is fatigue. I rarely wake in the morning feeling rested - but more like I have run a marathon with a bout of heavy flu, particularly if my sleep has been disturbed.

Fatigue is not another word for tiredness. It is a total shutting down of the mind and body - a barrier comes down past which you cannot move on. It puts everything I plan to do under threat.

'A vacant lot'

My other problems are more taboo and difficult to talk about.

Occasionally, when I am run down or stressed or have an infection or when any of the myriad other random triggers for an MS episode are present, I find my mind starts failing. I call these episodes "mind blanks".

It's difficult to communicate how the mind of a highly intelligent person can completely stop functioning and pretty much become a vacant space.

Recently, I was trying to pack a bag for my daughter to take on a weekend away and my mind literally blanked, not on what to pack, but on what people wear.

I kept staring into her wardrobe for clues, then returning back to her empty bag to stare at that, waiting for it to come back to me.

Computer
Trying to remember things can be 'like retrieving computer files'

My problem is not that I don't have strategies to cope with times like this - of course I do - it is that when I am cognitively impaired the strategy and planning part of my brain is nonexistent.

I know it sounds insane. The only way to describe it is that it is as if my mental space has emptied.

It is like looking at a vacant lot where there used to be houses, or not being able to retrieve files from a computer though you know they are there. At these times, I can't even read from a list.

The problem is, MS symptoms come down suddenly and I never know when those days will be.

When I know I have a job interview coming up or have to give a presentation or just because I am going to be in the company of other people and don't want to look stupid, there is always a nervous undercurrent in me.

The constant fatigue, and unpredictability of episodes like these make my life sometimes unbearably stressful and complicated.

'Are you sure it's MS?'

For 15 years, my life has been about planning, prioritising, reprioritising, cancelling, re-instating.

Obsessing about rest, getting angry when my sleep is disturbed, obsessing about getting everything done in time, getting angry when someone adds something else to my already over burdened to do list. Anger, lots of anger. Frustration, confusion, bewilderment, despair.

Living with a hidden illness can be hell.

I can't tell you how many times I have heard comments like "You look so well, I forget you have MS." And even once, "Are they sure it's MS you've got? Do you not mean ME?" As if I might have scattily mixed up a letter by accident at the time of diagnosis and got completely the wrong the end of the stick.

How is that it seems to know, how to take away what is most important to you?

And that's what worries me. What can these people think when I am going through an episode of significant cognitive defect?

I used to be a supremely confident and skilful communicator. From being at the heart of my comfort zone, communication has become an area of great stress.

When I am speaking, I worry about failing to hold peoples' attention. I sometimes get people to check the things I have written - even emails.

And in this area, lies the cruellest irony of this silently invasive illness.

MS takes a different course in different people.

How is that it seems to know, how to take away what is most important to you? The craftsman loses the use of his hands, the prima ballerina has to retire because she can no longer keep her balance?

Good days and bad

As a child, while other kids were playing or watching TV, I used to sit at an old typewriter in my bedroom, weaving stories rich with colour and character.

I was always winning writing competitions, my English teacher still reads from my work from 30 years ago at school assemblies.

Jaqueline du Pre
Cellist Jacqueline du Pre had her career cut short when she was diagnosed with MS

At 23, I published my first novel, with Penguin.

So when I heard I had MS, I was almost relieved. Of all the illnesses I could get, at least this one wouldn't change the fundamentals in my world. Whatever happened to me physically, I had my writing. I hadn't lost my dream: I could still contribute.

But almost immediately the cognitive problems hit and it was as if the real me had upped and left me with this idiot who just couldn't come up with the goods.

There were good days and bad days but the sum of the days was that I couldn't find the words the way I used to and everything had changed.

MS is a disease of loss and I have had a lot of losses to cope with, but this was the hardest to bear. Writing wasn't just what I did - it was who I was. At the bleakest times I thought, "If I can't write, I can't go on."

So when people, as they constantly seemed to, brought up the case of Jacqueline Du Pre, the gifted cellist who as a result of degenerative MS could no longer lift a bow and eventually died -"At least you're not like her" - they didn't realise what they were saying.

To other people, after my diagnosis, my life remained intact.

For me, it became fragmented and I struggled to feel complete when some of the most important parts of me were now missing.

'My incentive'

Depression is seven times more common in people with MS than in the general population and no wonder. Feelings of helplessness, isolation, loss of identity and self worth are all common in MS and very familiar to me.

But above all, what I have found during the last 15 years is that people not understanding makes everything much worse.

It wasn't helping me or my illness that I was managing it largely alone.

I don't want people to give me sympathy, I want them to understand why I operate the way I do and not to misjudge me.

That's why, when it dawned on me that I am going to have these experiences for a lifetime, I started talking more and more to people about what it is like for me, living with the symptoms of MS.

Five years ago, I gave birth to a little girl.

What is most important to me in life is her life: her needs, her happiness.

And it's a stunningly simple equation: when I'm well and happy, she is well and happy. What my daughter wants most from life, at five years old, is her mother.

She wants my time, my energy, my focus. She is my incentive to do anything it takes to keep myself well.

Where my unstable self esteem sometimes prevented me from asking for help or saying no to all the demands coming at me, in the case of my daughter, I would - like any parent - do anything it takes to protect her interests.

When she says, "Play with me, Mummy", I want to be able to play.

Alison Potts wrote this piece to mark World MS Day, and the launch of the Staying-Smart website by the UK's MS Trust.



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