When I was first diagnosed with MS at 22 it was safe to say I had no idea what to expect. My diagnosis happened in a flash. One day I was perfectly healthy the next I couldn’t feel the left side of my body. Like, at all. I got taken to hospital with a suspected stroke – which was fine because I told myself it had already happened right? I was in and out of hospital with a diagnosis within 3 days. It was a ticket to a whirlwind of an event over the weekend I never expected.
I didn’t know anything about MS. I was told by my doctor in the hospital that there was plenty of information online about MS and to go take a look in my own time. I thought this was a normal thing to say, turns out it wasn’t and that statement shocks everyone. What I learnt when I looked online was that there was a lot of conflicting information out there.
Over the last 6 years, MS and I have got to know each other pretty well. It’s like having an annoying sibling that bullies you 24/7. I’ve learnt to put it in its place.
Here are 5 myths about MS that are actually not true.
Nope. This is a total myth and actually only a very small number of people use a wheelchair. Even if you do use a wheelchair, it’s just a mode of transport to get you from A to B, think of it more like a car you don’t need a license for (plus you don’t have to worry about drink driving). Most people with MS are diagnosed with a type called ‘relapsing remitting’. This is where you go through different phases of symptom flare ups and what’s considered ‘normality’. Kinda like a lottery. Which symptoms you get depends on where your lesions are in your brain or spinal cord. Your neurologist (neuro) should be able to give you more info on where your lesions are. The difference between relapsing remitting and progressive is that relapsing remitting is the unpredictable one (aren’t we lucky). One day you can be fine the next you may have a flare up and progressive is the slow progression of the disease. It’s a catch 22, you’ll either have unpredictability or a slow progression. Either way, everything will be fine and we’ll get through this together.
Nope. It’s so not contagious but this is a good one to use to warn off muppets (or break the ice) depending on your humor. When I was diagnosed I was shocked to find that the people who I thought were my friends suddenly didn’t want to know me. I suspect it may be because of something silly like MS being contagious. In reality though it’s most likely they just didn’t understand what it was. At the time I didn’t either so I just let them go. If they were prepared to leave when the going got tough – then they weren’t true friends anyway.
Nope. Like I said previously – and this one really confused me when I was first diagnosed – everyone’s MS is different. Literally everyone’s. MS should be referred to as ‘My Snowflake’ because that’s how different and unique we are. Don’t get me wrong, some of us have similar symptoms but we’ll never all have exactly the same symptoms or the same severity of each symptom. Weird, huh? The main reason for this is because everyone’s lesions are in different places in the brain and spinal cord.
Nope. Of course you can exercise – despite what some neuro’s tell you. When I was first diagnosed I was told not to exercise by my neurologist in case I had a relapse and so I didn’t for 5 years. What did I find? My symptoms got worse. My fatigue got worse. My occasional shooting pains got worse. My anxiety and depression got worse. So I exercised. I started doing the couch to 5k and I absolutely fell in love with running. I had never been a runner and always told myself ‘I wasn’t built for running’. But it gave me a goal and that’s what I needed. A goal, a distraction, something to aim for. Did it give me a relapse? No, I’ve not had one for 6 years. Did it make my symptoms worse? No, it made them better. Better than that it strengthened my mind so I could deal with my symptoms better too. I was soon living with less fatigue, less pain, less anxiety, less depression. It was the secret weapon no one had told me about. Plus, It meant I was drinking more water so my skin cleared up, my hormones were more balanced and my hair got stronger. Why did my neuro tell me not to exercise? Your guess is as good as mine.
Nope. This is also not true. You can have children and there are plenty of people who have MS and had children. Don’t get me wrong, it will still be challenging with the added fun of MS but the human body is an amazing thing and many people say that during their pregnancy they experienced no symptoms whatsoever. Result. Maybe this is because of the creation of new stem cells for the baby? Who knows. I can’t give you my opinion on this yet as I’ve not had my own children, I got married two years ago and so it is on my mind. Feel free to reach out to me to chat things through if it’s on your mind too.
I’m Jessie Ace and I aim to help and inspire you to feel empowered with your invisible illness. I was diagnosed at 22 years old. I’d studied for 3 long years doing craft design and starting an illustration business then on the last day I woke up with a numb left side and two weak hands that couldn’t hold a pencil let alone draw with one. I decided to turn my MS into something good and I now (6 years on) write and illustrate blogs and articles for the biggest companies and magazines. I’ve also started the DISabled to ENabled podcast. I believe it’s not the hand you’re dealt with in life that defines you it’s how you respond to it that matters.