9 minutes, 17 seconds
I'm working in collaboration with an amazing team of people called "The World vs MS" and what attracted me to this was plain and simple – the title!
My name is Hannah and I'm 26 (soon to be 27 years old) and I have multiple sclerosis. I was diagnosed at the age of 24 and I'm going to talk to you about how this condition/disease/disability has affected my emotions.
Uncertain, Depressed, Lost, Anxious and frustrated
These were all the emotions I felt as I was going through the period of diagnosis. I called it “The Unknown” phase. I kept having what seemed to be MS flare-ups but at that time I was in the dark. I had a couple of breakdowns because my anxiety got so bad. I went away to stay with my Aunty a couple of times just to escape, which helped me a lot. But it was there I actually got THE call and was diagnosed with multiple sclerosis in December 2014.
This was the first emotion I felt when I was diagnosed. When I got that initial phone call my reaction was, “Ah yes! Something IS wrong with me”. Now don’t get me wrong, I didn’t want to have MS. But I had all these strange symptoms happening to me that no one could explain and it made me very frustrated. So when I finally had an answer I was relieved, knowing that I can now deal with what was wrong.
Calm, positive and happy
Whilst sorting out what I was going to do in order to help keep the MS at bay, I didn’t feel any different. I was calm, happy and just living my life as I did normally. I have a couple of family members with MS and they were giving me advice and ALWAYS telling me to keep positive. I just didn’t feel any different at this stage.
Uncertain, calm and positive
Visiting my first MS support group with my mum, I’d say 80% of the people there either had wheelchairs or aids to help them walk. Now there is absolutely nothing wrong with this, however as a newly diagnosed 24 years old, it was a little daunting and made me feel unsure about my life.
One of the ladies there asked me, “how have you taken the diagnosis?” and at this time I thought that was an odd question. Yes, MS is a life sentence but it’s not a death sentence. I wasn’t terminally ill and I explained that I was fine and positive. But later on things changed quite dramatically.
Worried and angry
During my first major relapse I was off work as a result and it made me feel angry that I couldn’t really do anything for myself. I was ashamed and embarrassed that my partner had to help me just to get into the bathroom and dress me. It scared me because I had never experienced this before. I felt like it was going to be this way forever.
Angry, jealous and depressed
So, I had been through my first major relapse. I kept having little flare ups but I could deal with those. What I couldn’t deal with was the overwhelming feeling of fatigue! Seeing all my friends on Facebook going out, having a good time and me not being able to. I felt very very jealous! I mean, I was 24/25 at this point and I wanted to go on nights out!
At the same time I was having problems with my previous employer. They did not understand in the slightest, which of course made me angry, stressed and depressed. I did everything to help them understand and encourage them to listen to me but in the end I had to leave.
Happy, calm and content
Here, I was having a good period. I had got a lovely new job where people were extremely understanding and supportive. This made me so happy and I just carried on living my life as normal. I was still trying to battle fatigue but at this point I called my MS my “evil Siamese twin” and I tried to ignore it or pretend I didn’t have it. That was a mistake!!
Depressed, anxious, lost and angry
November 2016 I had an appointment with my Neurologist and I just broke down in his room. I was struggling to cope. I felt depressed that fatigue was affecting me on a daily basis, angry that I had people saying to me “just pretend you don’t have MS” or “I don’t want you to be ill” and anxious because I had got myself into a very regimented routine – it was the only way I could control something. I felt like nobody of my age understood what I was going through. I felt lost. But my Neurologist was amazing and referred me for some counselling.
Stressed, determined and strong
During my second big relapse, I was off work for just over 3 weeks and for most of the time I was super stressed. I felt like I was letting my co-workers down (they were all lovely and didn’t think that at all) Since January 2017 I have created my own little journal where I plan, organised and colour in. I use it as a tool to help me manage my MS and honestly for me it has helped tremendously! I can plan without going over board and it made me feel strong and determined. I WAS going to get through this relapse!
Angry, positive, strong and determined
After my relapse I went through a phase where I’d get the odd comment, “you should just pretend you don’t have MS”, “I don’t want you to be ill”, “let’s keep your evil twin hidden”, “you need to just push through it”, “you don’t need to talk about it all the time”. STOP! I’d had enough with people telling me what to do and how to feel. It made me angry (they have no idea!). But then I turned that anger into positivity and determination. I was going to EMBRACE my illness. ACCEPT it. And most of all TALK about it!! We shouldn’t feel ashamed or embarrassed to have MS. We shouldn’t be ashamed to say when we are suffering. NO MORE hiding!
I want to be an advocate for this! I want to stand up to MS. Yes, I want there to be a cure one day but for now, why are we fighting this? This is how I’m going to look at MS! It is a part of me not to be ignored. This makes me feel empowered and strong!
© Genzyme Europe B.V.
Approval date: May 2017
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