No, I’m not talking about raising a baby. I’m talking about the diagnosis of a disability – specifically Multiple Sclerosis.
I won’t bore you with the details but like many MS stories, my symptoms were very sudden and random. Being told you have a disability is life-changing at any age, but as a 19-year-old all I thought about was how my youth was going to be robbed. And I guess, as sad as it is to say, it was to a certain extent. I come from an Egyptian and Sudanese community. Multiple Sclerosis is one thing then getting told it’s rare for someone from your ethnicity is like having salt rubbed in the wound. At first, I repressed all my emotions, I thought I was instantly doomed by default of diagnosis.
As someone who has RRMS (relapsing-remitting MS) it’s like being followed by a cloud and never knowing when it’s going to rain or thunder. That constant worry that tomorrow means anything can happen. It’s a blessing and a curse. You get to really appreciate the little things in life like having a good day and getting out of bed in the morning. The curse is self-explanatory, you don’t know what MS will rob you of. Sight, balance, and speech, aren’t even a handful of symptoms.
If there was one thing I realised early on is that MS doesn’t only change you, it changes everyone around you as well. And whilst you’ve made your peace with it and finally accepted the disease for what is, it doesn’t mean your loved ones have. As weird as it sounds, it’s almost easier to do so as you’re the one who is experiencing it. From the outside looking in, it’s probably even more confusing. Your left to somehow pick up all these pieces and try to figure out how to live your new life, one that’s in parallel to your diagnosis. That’s where the village comes in.
They say that you have MS but it doesn’t mean you are MS. As someone from an ethnic background, I beg to differ, for me at least. Spreading awareness and owning my MS really allowed me to adjust to my new reality. My first inspiration came from my friend who shared her disability online. I thought it wouldn’t be great to do the same with my MS. So, I spoke to social media about what MS is and how it affects me. I’m grateful because I had immense support from my community when I had done so. I really wanted to show them, whether it was MS or another disease, you’re not alone.
I created a TikTok account to help spread awareness about MS. I connected with people from all over the world with different backgrounds and created a group chat. I did this because I wish I was part of one when I was newly diagnosed; something a little more personal. My MS content on social media has always reminded me that I am not alone. This part of the village is a safe space with people who are just like me.
After browsing the internet, I was relieved to find Shift.ms. Finally, a forum with real people and real problems just like mine. Anyone living with MS will tell you it’s never just the GP and MS nurses. No, it's more like the snowball effect. Before you know it, you’re being referred to specialists, neurologists, consultants e.t.c. This isn’t a bad thing though. This part of the village assists you in numerous ways that are essential for someone who is living with MS.
And sometimes the village consists of random people. For example, the stranger who helped carry your bags down the stairs in the underground. Or the stranger who stops you during your 10-mile MS walk to ask what your cause is. I will forever be in awe of the support I get from my friends and family. The consideration they have when it comes to my MS and the baggage I carry because of it. This part of the village is my home, where I’m not ashamed of my MS.
So, if you ask me, it’s crucial to have a village. It makes that cloud a little brighter, and if it rains you know someone will hold the umbrella for you, even when you can’t.
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Hi there! My name is Rebecca and I have RRMS. I love to cook, read books and travel. I take pride in spreading awareness about my MS to my community (Egyptian/Sudanese) and other people all over the world.