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Helena Jidborg Alexander Headshot

Don't Call Me a Sufferer

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My name is Helena, and I have multiple sclerosis, this does NOT make me an MS sufferer. Sure, I do suffer from it from time to time but I really do not wish to be defined by it.

Multiple sclerosis is the most common disease of the central nervous system affecting young adults. The central nervous system comprises the brain and spinal cord. To explain it in a simple way, if your body is a temple, the knights that are meant to be protecting it against attack have a tendency of burning down their own castle door instead of fighting the enemies. These attacks that occur damage something called the myelin sheath that basically works like a protector for the nerves. This damage causes messages to get disrupted when they are sent from the central nervous system out to the rest of the body. Because the damage can occur anywhere on the brain or spine, you can end up with a multitude of strange things happening to you.

I for example have some lesions (scarring) on my spine. My neurologist told me this is the explanation to why, in my first ever relapse, I got my signals telling my brain what was cold and what was hot mixed up. It was very odd, as it only affected my right leg. I stood in a warm shower, and my leg would feel freezing water, the rest of the body would feel warm water.

MS affects people very differently, depending on where the scarring occurred and the extent of the scarring or lesions within the central nervous system.

Enough science, what I wanted to explain by this is that living with MS is very different from person to person, and some of us do indeed suffer very badly from it. In fact some people suffer every minute, every day. BUT they are still a person with MS, not a sufferer.

I do suffer from time to time, but am lucky that most of the time I don't. Before my diagnosis and the year after I had many relapses and I did suffer a lot. I would get a horrible pain in my right hand, it would seize up and go numb and I couldn't do any typing or lifting. I would wake up in the night with bad pain, and my arm completely numb, like it wasn't a part of my own body any more. I would be lying if I would say I wasn't suffering then, it was horrible.

Now I have lived five years without any relapses, my biggest issue is fatigue. I don't think I have had a day without fatigue in over six years. But it is a part of my life now, so I do what Jack Osbourne said when he "came out" as a person with MS, I adapt and overcome. So no, I am not a sufferer, if you didn't know me, and you met me, you would never know I had MS.

I know some people with MS like to refer to themselves as MS sufferers, and that is their choice. But for us who ask not to be referred to as a sufferer, please don't call us that.

Newspapers love to use the phrase, as I guess it has more of an impact, it sounds maybe more powerful. One of my friends who also has MS pointed out to me, when I was complaining about this on Twitter, that being called a sufferer feels like being criticised, another friend with MS said it dehumanises us.

I wish the media instead could help us raise more awareness about MS so people would learn more about what it is and how different it is from person to person. We are after all more than 100,000 people living with it in the UK.

So yes, we have MS. Some of us suffer a lot, some of us a little, and some of us not much at all. But we are still people, people who live with MS, not sufferers.

To learn more about MS please visit the MS Trust Website

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