By Darbi Haynes-Lawrence, PhD, 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 often disabled. I’m 47, but in my brain I’m still a college track athlete who ran weekend marathons.
I have always been a great goal oriented person. I obtained my doctorate at the age of 30 and my dream has always been to be dean of students. I can not now. I have to be realistic, and that means changing my life goals. It can be frustrating.
Sometimes I really feel like an impostor, in that I could do so much more if I didn’t have MS. It’s a daily battle to feel like I’m not doing enough. Every day when I need to rest a bit, part of my brain tells me, “No. You’re so lazy. Look at those other people who can do it without lying down to rest.”
Sometimes I give myself a few minutes to be in a pool of pity. But not for long. I let go of negative thinking. I crop it. Then I say it out loud: “I have the right to rest right now. Disabled or not, I’m tired and I won’t be useful to anyone if I don’t rest. Then I give myself that time and off we go. It’s rare if I take a whole day off.
Prepare to be doubted
A number of people have said to me, “You don’t look handicapped. Why are you using this disabled parking space? And it’s like, “Well, give me a second to get out of my car and get out my wheelchair, and let me show you.”
The doubt that people had still haunts me. It was a real blow to my self-esteem.
Sometimes health problems are not visibly obvious right away. They are “hidden” physically. But the condition is there all the same.
Ask your doctors
Years before I was diagnosed with MS, I had completely bizarre symptoms. First the roof of my mouth burned. It was absolutely on fire. Then the right side of my face sagged. And then it just progressed from there to the whole right side of my body which became very weak.
In my early 20s, I remember starting to stumble a lot and thinking, “Oh my God, this is what happens to you when you go from being a college athlete to training once or twice a week. “
I also had trouble retaining the words. It’s horrible to go from a very large vocabulary to struggling to find the right word sometimes.
After having my daughter at 30, my strength started to decline 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 to me, “You are a young professional woman. You have a small child. You and your husband have a business. You are just stressed. Women are often told “it’s just stress”.
A doctor told me I was crazy. He was my GP and he shook my confidence. He made me doubt everything I was going through. I had assumed he would treat me well and be the leader of my medical care team. But it took a lot of emotional blows from this man for me to realize that he was a very bad choice for this role. Eventually, I fired him. I would have liked to believe myself that I was not crazy.
It was my dentist who put me on the right track after I told him that my lips were swollen and the roof of my mouth was burning. These could be signs of a neurological health issue, he told me. And that’s what prompted me to see the neurologist who finally diagnosed me with relapsing-remitting MS.
I therefore recommend that you question and investigate your healthcare team. And don’t be afraid to fire your doctor. Never let them put you down just because they have the “Dr.” before their 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 going through. I was also relieved that there was a treatment plan. I could go on. My career was not over. I was going to be able to be there for my daughter, who was 4 years old at the time.
The rest of my family was terrified. 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? How to keep moving forward? I couldn’t find the information I was looking for as a mom.
Eventually I created the resource that I didn’t have at the time. I wrote A conversation about multiple sclerosis, my first of three children’s books for the MS Foundation. I hope this will empower families.