What People Need to Know in MS Awareness Month

This is an update on a post I wrote last year about MS Awareness.  The thing is, many people don’t really know about MS… as an Occupational Therapist once said to me, ‘it is not one of those ‘sexy’ diseases like cancer’.  Whether ‘sexy’ is the right word or not, what she meant was it is not a disease that people automatically understand.  Cancer = completely and utterly awful, but then MS = completely and utterly awful too… we are still at the stage where people might say, ‘MS?  What exactly is that?’.  The OT was trying to explain to me why we still have to fight for medical services and help (like use of a blue badge for parking), whereas others may not.  Anyway, please find my thoughts about MS Awareness below, I would love to hear any of your own!

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March heralds MS Awareness month.  But what does this actually mean?  In my life, I’ve found that most people are ‘aware’ of MS; they have a 2nd cousin twice removed who has it, or, as my husband used to think, ‘it is something that affects your mobility… so you end up in a wheelchair’.  Heck, I used to associate MS with wheelchairs… I remember being at Primary School, meeting a man using a wheelchair – he had MS.

Beyond maybe knowing of someone with MS, do others truly understand the disease?  If I was going to raise awareness of MS, there are a few simple things I would like to make other people, those who have no personal knowledge and experience of MS, to be aware of:

Aware…of what MS is.  MS is a chronic, degenerative neurological disease that tends to be diagnosed between the ages of 20 and 60, though it can be diagnosed earlier or later.  About 100,000 people in the UK are diagnosed with MS.

Aware…. that MS is a ‘snowflake’ disease.  We are all the same (have the same disease, Multiple Sclerosis), but we are all different.  We may not all have the same symptoms and, if we do, they may not affect us in the same way.  One example is mobility – I have problems with my left side and I use crutches and a scooter.  Other MSers may have problems with their hands, some may have to use mobility aids, such as canes, walkers and/or wheelchairs, some may not.  Some may have ‘relapses’, where their mobility worsens, then get gets a bit better, others will have problems with their mobility 24-7.  Not everyone ends up in a wheelchair, some may use them intermittently.

Aware…that MS is often considered a ‘hidden’ illness.  An MSer may not experience any obvious problems that are easy to see at first glance.  But fatigue, dizziness, cognitive problems (such as memory loss, word-finding difficulties), blurred vision, numbness and bladder/bowel problems are all common symptoms.  And these symptoms are often the most debilitating, impacting on MSers social lives, ability to work and ability to be the person that they most want to be.  Most MSers will tell you that people will often say, ‘but you look so well!’  Putting on a bit of blusher can help me look ‘well’, but unfortunately doesn’t eradicate the hidden symptoms.

Aware…that we are the same as you.  People diagnosed with MS are wives, parents, boyfriends, children… anyone can be diagnosed.  We have or have had careers and hobbies, we still like to socialise and do everything that you like to do…it just may be more difficult for us.  Those of us who are obviously disabled may ‘look’ different to you, but we are still the same person we always were, inside.

Aware… that diet and lifestyle can have a positive impact for some people with MS, especially if adopted early in the disease.  Dr Roy Swank first looked into the link between saturated fat intake and MS progression in the 1950s (those with lower saturated fat intake progressed less and slower than those with higher intake).  The Overcoming Multiple Sclerosis programme extends on this – through their Holism research, they’ve shown clear links between lifestyle and wellness in MS.

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Aware… that there is ongoing research and new discoveries into new medications to help MS.  Not everyone qualifies for them (it is that ‘snowflake’ disease again) but, compared to when I was first diagnosed in 1994, the options for treatment are massive.  Over the past year or so, there is even more money going into studies to look at things to help progressive MS – Primary Progressive MS and Secondary Progressive MS – with the UK MS Society describing it as their ‘top research priority’.

Aware… that despite this ongoing research, there is no cure.  There is no cure.

This is what I want people to be aware of during MS Awareness month… is there anything you would like others to be aware of?

The original version of this post was also posted on The Mighty