Some thoughts on living with an invisible disability in the UK.

If you’ve read the tag line on my blog you’ll know I have MS.  If you have never met me this will lead you to make one set of assumptions.  If you have met me it is highly likely that you’ve uttered the words “But you look so well”, and you’ll have made a different set of assumptions.  Well, as the old saying goes, when you assume you make an ass out of you and me.

The first assumption I want to tackle is that MS is one disease.  In fact every person’s MS is different.  Yes, the disease attacks the myelin sheath around our nerves so in that respect it is one disease, but each person’s experience of the disease is different.  Not only that, but the disease will affect us in different ways on a daily basis.  On my worst days I can’t lift my head off the pillow because I’m crushed by devastating fatigue.  I know, I know, we all get tired… The difference between feeling tired and MS fatigue is huge.  MS fatigue isn’t alleviated by rest or sleep.  I’ve had days when lifting my head off the pillow requires too much effort, and days when I can’t eat because I can’t sit up.

The second common assumption people make is that I can’t really be disabled because I’m not in a wheelchair, and therefore I shouldn’t have the Blue Badge that allows me to park in the disabled bays in car parks.  In reality if I need to walk more than 20 metres I use my mobility scooter,where practical.  For the times when I can’t use my scooter I’ve just bought this easy to fold rollator with built-in seat.  I will now be able to wait in line in a queue without worrying about maintaining my balance, my leg deciding to give way, the fatigue it will cause, and my back aching.  A wheelchair would be of no use to me, unless I had a carer to push me in it, as I couldn’t physically propel myself using my arms.image

The third assumption I want to tackle means straying into politics.  Sadly in the last 5 years, in the UK, the government has been spreading a pernicious message, with the help of some in the media, that people like me are benefits scroungers, faking symptoms in order to live off the welfare state because we are lazy.  Politicians can be heard making the statement that it is a “lifestyle choice” to live on benefits instead of working.  Believe me, the lifestyle I had when I was capable of work was not one I willingly gave up.  The drop in my income has been significant.  I didn’t choose to end my career; MS made it impossible to for me to do my job.  I don’t know how disabled people are portrayed in other countries, but in the UK we are demeaned and have become the targets of hate crime.

There are lots of positive things in my life: I have wonderfully supportive friends and family; I make the most of the things I am able to do; I’m happy!  I don’t want your pity or sympathy.  I would appreciate your understanding and occasionally I may even need your help.

PS: It’s better to ask a well intentioned question rather than making an ill informed assumption.

2 thoughts on “Some thoughts on living with an invisible disability in the UK.

  1. This is such a great blog post, thank you for writing it and challenging some common misconceptions people have about those of us with MS and invisable disabilities. I hope over time there will be more understanding and blogs like this really help to shift the way people think!


    1. Thank you Tori, it’s something I feel passionately about, and if I can change just one person’s perception it will have been worth writing. Please feel free to share it with anyone you think might benefit from reading it.


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