My name is Rania, but I’m more commonly known these days as miss anonyMS. I’m 29, live in Melbourne, Australia, and I was diagnosed with multiple sclerosis (MS) in 2009 at the age of 19.
It’s quite a funny thing when you’re diagnosed with an incurable disease that leaves you looking fine on the outside but wreaks havoc on the inside.
Your brain controls your body through nerve impulses, and MS attacks the nerves that send those messages. This, in turn, alters how your body functions. So, I’m sure you can imagine just how inconvenient this disease is.
I’ve tripped on thin air in public way too many times to count because my leg decided to stop working. One time I fell down so hard to the concrete that I ripped my pants.
I couldn’t get up because those silly nerves in my brain decided to short circuit, leaving me on the floor with people wondering: How did she just fall so bad in flat shoes with nothing around her? I laughed and cried while trying to explain why my leg wasn’t working.
The inconvenience of this disease continues with involuntary muscle spasms.
I’ve kicked people under tables, tipped my coffee on people, and looked like I was auditioning for a horror movie in the middle of the shopping center. I also look like I’m part of a zombie apocalypse on the regular from the horrific fatigue it causes.
Jokes aside, an MS diagnosis is a lot to handle, especially at the young age of 19. Here are all of the things I wish I knew sooner.
When I was first diagnosed with MS, there weren’t many forms of treatment available. I had to inject myself four times a week while not being able to feel the right side of my body.
I used to cry for hours, not being able to inject myself with medication because I’d anticipate the pain.
I wish I could go back and tell that girl who would sit with the injector on her leg — which was covered in welts and bruises from the needles — that treatment would come so far that you won’t have to inject yourself anymore.
It’d improve so much that I’d regain the feeling in my face, arm, and leg.
I wish I knew that you learn your greatest strengths when you’re faced with the worst of life’s challenges.
I experienced mental and physical pain from injecting myself, I’ve lost feeling in my limbs, and I’ve lost overall control of my body. Out of these things, though, I learned my greatest strengths. No university degree could teach me my strengths, but the worst of life’s challenges could.
I have a resilience that can’t be beat, and I have a smile that doesn’t fade. I’ve experienced real darkness, and I know how lucky I am, even on a bad day.
I wish I could tell myself that I absolutely need support, and it’s more than OK to accept it and ask for it.
My family are my absolute everything. They’re the reason I fight so hard to be well, and they help me with cooking, cleaning, or gardening. I didn’t want to burden my family with my fears, though, so I turned to an occupational therapist who specializes in MS and never looked back.
Being able to talk to someone other than my family helped me really accept the cards I’d been dealt and deal with the emotions I was feeling. This is how my blog miss anonyMS began, and now I have a whole community of people to share my good and bad days with.
I wish I could tell myself not to compare my diagnosis to other people’s diagnoses. No two people with MS will share the same exact symptoms and experiences.
Instead, find a community to share your concerns and find support. Surround yourself with those who understand exactly what you’re going through.
At first, my way of coping was to pretend that I was fine, even though I became a figure of myself that I didn’t recognize. I stopped smiling and laughing and buried my head in my studies because that was the best way I knew how to cope. I didn’t want to burden anyone with my illness, so I lied and told everyone I loved I was fine.
I lived like this for many years until one day I realized I couldn’t do it alone anymore, so I asked for help. Since then, I can truly say I’ve found my way of living well with MS.
I wish I knew that coping is different for everyone. It’ll happen naturally and at its own pace.
One day, you’ll look back and know you’re the strong warrior you are today because you walked through that war and continue to fight that battle. You’ll come out stronger and wiser each time, ready to conquer again.
I wish that my 19-year-old self knew to truly believe that everything would be OK. I would’ve saved so much stress, worry, and tears.
But I know it’s all about the process. Now, I can help those who are dealing with some of the same experiences I went through and give them the information they need.
It really will be OK — even through all the storms — when it’s too dark to see the light and when you think you have no more strength to fight.
I never thought something like an MS diagnosis would happen to me, and yet I was wrong. It was a lot to comprehend at the time, and there were many aspects of the disease that I didn’t understand.
Over time, however, I learned how to cope. I learned to see the good in every bad. I learned that perspective is your best friend, and I learned how important it is to be grateful for the simple things.
I might have tougher days than the average person, but I’m still so lucky for all I have and for the strong woman this disease has forced me to be. No matter what life throws at you, with a good support system and a positive mindset, anything is possible.
Rania was diagnosed with MS at age 19 while in her first year of university. In the first years of being diagnosed and navigating her new way of life, she didn’t speak much about her struggles. Two years ago, she decided to blog about her experience and hasn’t been able to stop spreading awareness for this invisible disease since. She started her blog miss anonyMS, became an MS Ambassador for MS Limited in Australia, and runs her own charity events with all proceeds going to finding a cure for MS and support services to help people living with MS. When she’s not advocating for MS, she works for a bank where she manages organizational change and communications.