Written by Darby Hines Lawrence, Ph.D., 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 so much. I’m 47, but in my mind I’m still a track athlete in college, running marathons on the weekends.
I’ve always been a big, goal oriented person. I got my PhD when I was 30, and it has always been my dream to be the Dean of Students. I can not now. I have to be realistic, and that means adjusting my life goals. It can be frustrating.
Sometimes I feel so much scammed that I could do so much more if I didn’t have MS. It’s a daily battle over feeling like I’m not doing enough. Every day when I need a little rest, part of my mind is like: “No. You’re too lazy. Look at these other people who can do that without lying down to 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. I reframe it. Then I say it out loud: “I’m allowed to rest now. Disabled or not, I’m tired and won’t help anyone if I don’t rest.” Then I allow myself that time, and we go. It’s rare for me to take an entire day off.
Prepare to doubt
A number of people said to me, “Don’t look disabled. Why are you using this disabled parking space?” And he’s like, “Okay, give me a second to get out of my car and get the wheelchair out, and let me show you.”
Suspicion that people are still stalking me. It was a real attack on my self-esteem.
Sometimes, health conditions are not immediately apparent. They are physically “hidden”. But the condition there is all the same.
Ask your doctors
Years before I was diagnosed with MS, I was experiencing completely strange symptoms. At first the roof of my mouth burned. It was completely on fire. Then the right side of my face was sagging. And then I advanced from there, to the right side of my body it became very weak.
In my early twenties, I remember starting to stumble a lot and think, “Oh, my God, that’s what happens to you when you go from being a college athlete to only exercising once or twice a week.”
I also had trouble remembering words. It’s awful going from a very large vocabulary to just struggling for the right word sometimes.
After I gave birth to my daughter at the age of 30, my strength started to wane a little. 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 have a young child. You and your husband have a business. You’re just nervous.” Women are often told “it’s just stress”.
One of the doctors told me I was crazy. He was my GP, and it hurt the confidence I have in myself. It made me doubt everything I was going through. I assumed he would treat me well and be the leader of my medical care team. But it took a lot of emotional beating from this guy to realize that he was a really bad choice for this role. In the end I fired him. I wish I could believe myself that I’m not 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. He told me these could be signs of a neurological health condition. This led me to see a neurologist who finally diagnosed me with relapsing MS.
So, I recommend that you question and investigate your healthcare team. And don’t be afraid to fire your doctor. Never allow them to belittle you just because they have a “Doctor”. in front of their name. Keep asking questions. Keep searching for answers. And don’t give up.
Your family may need help adjusting
When I was finally diagnosed with MS at age 34, I was relieved that I had a name for what I was struggling with. I was also relieved to have a treatment plan. I can go on. My career is not over. I would have been able to be there for my daughter, who was 4 at the time.
The rest of my family was terrified. They all grieved about the diagnosis, even though I didn’t. I thought, “How do I explain MS to my daughter? How do I explain that to my family? How do we keep moving forward?” I did not find the information I was looking for as a mother.
In the end, I created the resource that I didn’t have at the time. I wrote A conversation about multiple sclerosisMy first of three children’s books for the MS Foundation. I hope it empowers families.