By Darbi Haynes-Lawrence, PhD, as told to Evan Starkman
It’s been 13 years since my neurologist diagnosed me with relapsing-remitting MS, and I still forget that I’m disabled a lot. I’m 47, but in my brain I’m still a college track athlete who ran marathons on the weekends.
I’ve always been a big goal-oriented person. I got my doctorate by the time I was 30, and my dream has always been to be a dean of students. I can’t now. I have to be realistic, and that’s meant modifying my life goals. It can be frustrating.
Sometimes I feel very much like a fraud, in that I could be doing so much more if I didn’t have MS. It’s a daily battle of feeling like I’m not doing enough. Every day when I need to rest for just a little bit, one part of my brain is like: “No. You are so lazy. Look at these other people who can do it without lying down for a rest.”
Sometimes I give myself a few minutes to be in a puddle of pity. But not for long. I let the negative thought come through. I reframe it. Then I say it out loud: “I am allowed to rest right now. Disabled or not, I’m tired and I’m not going to be any good to anyone if I’m not rested.” Then I allow myself that time, and off we go. It’s rare if I take a whole day off.
A number of people have told 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 my wheelchair out, and let me show you.”
The doubt that people had still haunts me. It was a real attack to my self-esteem.
Sometimes health conditions aren’t visibly obvious right away. They’re “hidden” physically. But the condition is there all the same.
Years before I got diagnosed with MS, I was getting completely bizarre symptoms. First the roof of my mouth burned. It was absolutely on fire. Then the right side of my face was sagging. And then it just progressed from there, to the whole right side of my body becoming very weak.
In my early 20s, I remember beginning to stumble a lot and thinking, “Oh, gosh, this is what happens to you when you go from being a college athlete to only working out once or twice a week.”
I was also having a difficult time remembering words. It is horrific going from a very large vocabulary to just struggling for the right word at times.
After I had my daughter at 30, my strength began 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 out of my right eye.
My doctors said: “You’re a young professional woman. You’ve got a small child. You and your husband have a business. You’re just stressed.” Women often get told “it’s just stress.”
One doctor told me I was crazy. He was my general physician, and he damaged the trust that I have in myself. He made me doubt everything I was experiencing. I had assumed he would treat me well and be the leader of my medical care team. But it took a lot of emotional battering from this man for me to realize that he was a really poor choice for that role. Eventually I fired him. I wish I would have believed myself that I wasn’t crazy.
It was my dentist who got me on the right track after I told him that my lips were swollen and the roof of my mouth was burning. Those could be signs of a neurological health condition, he told me. And that’s what prompted me to see the neurologist who finally diagnosed me with relapsing-remitting MS.
So, I would recommend that you question and investigate your health care team. And don’t be afraid to fire your doctor. Never let them belittle you just because they have the “Dr.” in front of their name. Keep asking questions. Keep searching for answers. And don’t give up.
When I finally got 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 plan of treatment. I could keep going. My career wasn’t over. I was going to be able to be there for my daughter, who was 4 at the time.
The rest of my family was terrified. They all grieved 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? How do we keep moving forward?” I wasn’t finding the information that I was looking for as a mom.
Eventually I created the resource I didn’t have back then. I wrote A Conversation About Multiple Sclerosis, my first of three children’s books for the MS Foundation. I hope that it empowers families.