Lessons from my journey with relapsing remitting MS
Fighting the stigma of MS
October 6, 2022
The importance of sticking with your MS treatment
October 6, 2022
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By Darbi Haynes-Lawrence, PhD, as Evan Starkman has said
It has been 13 years since my neurologist diagnosed me with relapsing remitting MS and I still forget that I am often disabled. I’m 47, but in my mind I’m still a college track and field athlete who ran marathons on the weekends.
I’ve always been a big goal-oriented person. I got my doctorate when I was 30 and my dream has always been to become the dean of studies. I can not right now. I have to be realistic and that means changing my goals in life. It can be frustrating.
Sometimes I feel very much like a cheater as I could do so much more if I didn’t have MS. It’s a daily struggle of not doing enough. Every day when I just need a little rest, part of my brain says, “No. You are so lazy.
Sometimes I give myself a few minutes to be in a puddle of pity. But not for long. I let the negative thought through. I’m changing it. Then I say it out loud, “I may rest now. Disabled or not, I’m tired and I won’t be of any use to anyone unless I’m rested.” Then I treat myself to this time and off we go. It’s rare that I take a full day off.
Prepare to be doubted
A number of people have said to me, “You don’t look disabled. Why are you using that disabled parking spot?” And it’s like, “Well, give me a second to get out of my car and pull out my wheelchair, and let me show you.”
The doubt people had still haunts me. It was a real assault on my self-esteem.
Sometimes health problems are not immediately visible. They are physically “hidden”. But the condition is still there.
Ask your doctors
Years before I was diagnosed with MS, I started having completely bizarre symptoms. At first my taste buds burned. It absolutely burned. Then the right side of my face sagged. And then it just kept going until the whole right side of my body got very weak.
I remember starting to stumble a lot in my early 20’s and thinking, “Oh god, this is what happens to you when you go from being a college athlete to just training once or twice a week.”
I also had trouble remembering words. It’s awful going from having a very large vocabulary to just struggling to find the right word at times.
After having my daughter at 30, my strength started to decline quite a bit. Over the next few years, I started choking on my food because I couldn’t chew and swallow well. I also had trouble seeing with my right eye.
My doctors said, “You are a young professional woman. You have a small child. You and your husband have a business. Women are often told “it’s just stress”.
A doctor told me I was crazy. He was my family doctor and damaged my confidence in myself. He made me doubt everything I experienced. I had assumed he would treat me well and be the leader of my medical care team. But it took me a lot of emotional pounding from this man to realize that he was a really bad choice for the role. Eventually I fired him. I wish I’d believed myself I wasn’t crazy.
It was my dentist who set me on the right track after telling him my lips were swollen and my gums were burning. These could be signs of a neurological health condition, he told me. And that prompted me to see the neurologist who eventually diagnosed me with relapsing remitting MS.
As such, I would recommend that you interview and examine your healthcare team. And don’t be afraid to fire your doctor. Don’t ever let them put you down just for saying “Dr.” in front of her name. Keep asking questions. Keep looking for answers. And don’t give up.
Your family may need help adjusting
When I was finally diagnosed with MS at the age of 34, I was relieved to have a name for what I was experiencing. I was also relieved that there was a treatment plan. I could go on. My career wasn’t over yet. I would be able to be there for my daughter who was 4 years old at the time.
The rest of my family was appalled. They all mourned the diagnosis, even though I didn’t. I thought, ‘How do I explain multiple sclerosis to my daughter? How do I explain it to my family? I did not find the information I was looking for as a mother.
Eventually I created the resource I didn’t have then. I wrote A conversation about multiple sclerosis, my first of three children’s books for the MS Foundation. I hope it strengthens families.
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