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I was diagnosed with MS a week before my 27th birthday, but I consider myself lucky that I was diagnosed so quickly.
Multiple sclerosis, or MS, is an autoimmune disorder that affects the brain and spinal cord. It's most often diagnosed in people between the ages 20 and 50, and is more common in women than men. This is the story of Stephanie Cartin, the co-CEO of the social media and influencer marketing agency Socialfly, who found out she had MS at age 26.
I woke up one morning and couldn’t move my neck.
It was the summer of 2011 and and it was really hot in my apartment. I started having pain in my neck and back, but I figured it was because I was sleeping with the air conditioner on full blast, which was making my muscles tight. But it kept going on and on, and after a few weeks I woke up and couldn’t move my neck — at all. I was in so much pain. It was about a week before my birthday, and I was about to turn 27.
I thought I had a pinched nerve. I called the doctor and they were able to get me in that day. The doctor agreed that I probably had a pinched nerve, but sent me for an MRI just to be sure.
The next day my doctor called and asked me where I was, and I remember thinking, Oh my gosh, I am dying. I was so scared. They could see lesions, these dots, but weren’t sure what they were because the MRI had been done without contrast dye. The doctor thought it was either MS or one of two other horrible conditions — I don’t even remember what they were — so I had another MRI, this time with contrast.
This was on a Friday and they sent me for the next MRI on Saturday. I got a call about an hour after the scan, and thought, This is not a good sign that my phone is ringing.
Stephanie Cartin
They said it looked like multiple sclerosis and that I needed to see a neurologist.
I had heard of MS, but I didn’t really know much about it. So of course I did the one thing you should never do — I went to Google. I looked at all these forums and was like, Oh my god this is the end of the world. But it’s not. And it wasn’t.
Multiple sclerosis, or MS, is an autoimmune disorder that affects the nerve cells in your brain and your spinal cord. There are so many different symptoms because it varies depending on where the lesions are located and external factors, such as exposure to heat and stress. MS symptoms can include fatigue, tingling and numbness, problems with speech, muscles, and coordination, as well as sensitivity to heat and vision problems. No two people are going to have the exact same symptoms, and the symptoms can flare and subside, so it depends on what is going on in your body and your life.
It can sometimes take years to get a diagnosis, so I was lucky that I didn’t go to 15 doctors to figure out what was wrong. After I thought about it, I might have had it even sooner. In the couple years before the diagnosis, I had had pain in my hands and some tingling, and was tired all the time — things you don’t even realize could be an actual problem. But I want to emphasize that a lot of people have neck pain and it’s not usually MS. The average person in the US has a 0.1% chance of developing this disease, about 1 in 750, according to the National Multiple Sclerosis Society.
Stephanie Cartin
It was a really rough at first, both emotionally and physically. But therapy helped.
I was able to find a neurologist who gave me corticosteroid treatments, which helped. But in addition to my original symptoms, I developed a bad case of optic neuritis, which causes vision problems. I couldn’t really see anything, even with my glasses, so I thought I was going blind as well. But I got better after the steroid.
But when you take a steroid, you don’t feel great; I couldn’t sleep, I had heart palpitations, and my face and chest broke out with the worst acne you have ever seen.
I was so anxious about my future. I thought, Who is going to marry me if I have this disease? Am I going to be unlovable? My husband and I were dating when I was first diagnosed and I was so scared he would not want to be with me anymore. That wasn’t true — he has always been there for me. But it was so, so stressful at the time.
Instagram: @stephjillcartin / Via instagram.com
I was seeing a therapist and she really helped. I know it sounds cliché, but having a positive mindset is so important. And it’s not like you can just say, ‘I’m going to be a positive person today." You really have to work at it. But I do think that you can change your thought patterns, sort of like retraining your brain.
In addition, I started blogging about how I was feeling and connecting with other people who have MS. People started reaching out to me and I formed this support network, which was incredible. I ended up meeting one of my best friends because of this. I was watching a National MS Society video in which Marni Blake Ellis interviewed Jack Osbourne, who also has MS. I reached out to Marni, we got coffee, and we’ve been friends ever since.
Marni is the founder of MSquared: Music Against MS, which raises funds for MS research, and we work on charity events together. We have an event on May 16 in New York, which will be hosted by HQ’s Scott Rogowsky.
Stephanie Cartin
Since my diagnosis, I’ve had a couple relapses, but I’ve done fairly well.
For example, I had Lhermitte’s sign a few years after I was diagnosed, which is a shock, or a feeling of tingling, that goes down your neck and back. It wasn’t really painful, just annoying. This past year I had a relapse and had trouble walking — it felt like I was walking through mud. Luckily, steroid treatment helped me again.
Now my mantra is, I only have one body and I have to take care of myself, because if I don’t have this body, I can’t do anything. It’s really important to get enough sleep each night and manage stress. I often pause and think, Do I really need to be doing this, or am I better off resting and doing what I need to do at home?
Exercise has also been a lifesaver. It’s important to strengthen your body and muscles if you have MS, and it’s also good for your mind. And in the summer, I know I can’t stay outside for a long period of time. I really struggle in the heat. I have to find a place I can go to cool off and be in the air conditioning. If I don’t, I get tired and my vision will be blurry.
This disease is really invisible. You may be on the subway, and look perfectly young and healthy, but have horrible fatigue and really need to sit down. People can’t see that, so you have to share your voice and explain what’s happening, and that can be really hard for people to do.
I feel like I am lucky to have doctors I can rely on and a support system, friends and family, who are there for me. My husband has been really incredible, and so has my business partner at Socialfly, Courtney Spritzer.
It’s been a bumpy road. I’ve had my ups and downs. But a lot of good things have come from this too. Getting a diagnosis like MS is not a death sentence — your life is not over. After a serious medical diagnosis, it’s more about problem-solving and figuring out what your new life and your new normal is. I want people to know that life does go on after a diagnosis — you can figure out a path forward.
This post has been edited for length and clarity..
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