By Stephanie Adams, as told to Stephanie Watson
Most 23-year-olds are focused on their career and dating. But at 23, I was worried I might never walk again. I worried people would view and treat me differently due to my chronic disease.
My first symptom appeared in April 2020. I'm a pediatric oncology nurse at Children's Hospital of Philadelphia. I had drifted to sleep after a night shift. When I woke up, I couldn't see my cellphone clearly. The screen was blurry until I closed one of my eyes.
I brushed off the symptom as exhaustion, but it didn't improve. In fact, it got progressively worse. Objects and things around me began to show a slight doubling in my vision.
This was at the height of the pandemic. I made an eye doctor appointment, but the office canceled it. Fortunately, Wills Eye Hospital in Philadelphia has an emergency department. They checked my vision but couldn't find anything wrong, so they sent me for an MRI.
Eight hours later, with two lesions discovered in my brain, I had a diagnosis: Multiple sclerosis. A lumbar puncture – a diagnostic test that removed a sample of my spinal fluid – confirmed it.
The Search for Meaning in My MS
Everything I knew about MS I'd learned in nursing school, which wasn't much. I knew it was serious, but how serious? I wracked my brain to figure out what my diagnosis might mean.
I pored through the research. One theory I discovered was that getting diagnosed with MS at an early age could be a good thing, because my overactive immune system might calm down as I age. Other research showed that people who are diagnosed early can face progressively worse cognitive (thinking) issues as they get older.
Seeing the research was simultaneously comforting and disheartening. My disease could get worse, but how much worse is still unknown, as MS varies so much from one person to another. I've always been hyper-independent. The thought of having to depend on someone in the future scared me.
I started to question everything I'd done, or didn't do, that might have contributed to my condition. "If I didn't drink as much as I did in college, would I have MS?" "Maybe it was my diet, and I should have eaten better all these years." But there is no "why" to MS. Even experts don't fully understand the cause.
Slowing the Disease
Finding a doctor who is willing to meet you where you are is really important. I found that in Dr. Dhanashri Miskin at Jefferson Health. She keeps me up to date on all the evidence-based research she hears about at conferences. We have a great relationship.
I take an oral immunomodulatory disease-modifying medicine called Aubagio. It has kept me stable for the last 4 years. I haven't had any signs of relapse. Actually, my MRIs have improved. I've gone from having two brain lesions to one. My doctor thinks lifestyle changes might have helped.
I try to prioritize getting enough sleep. I limit alcohol and don't smoke in any form. I've taken biotin, vitamin D, and fish oil supplements (with my doctor's approval, of course). I also try to do things I enjoy, like listening to music and working out. Just keeping a positive mindset has helped a lot, too.
Life With MS
I've been lucky in that MS has had a minimal impact on my life so far, although it does make me more tired than the average 27-year-old. I used to work 12-hour shifts as a floor nurse, but with the fatigue, that became too much. Now I work as an outpatient nurse with a more manageable 8-hour shift.
When I'm sick, it takes me longer to recover. That may be partly due to my medication, which lowers my immune system response. I mask up in crowds and stay up to date on my vaccinations and boosters to avoid infections.
The side effects of MS medications can be tough. Sometimes they're harder than the disease. I had hair thinning and fatigue from having my immune system suppressed. That's where it's really important to partner with your doctor. We talked, and Dr. Miskin lowered my dose, which improved the side effects.
I also joined an MS support group. I'd recommend it to anyone who's newly diagnosed. I met someone who is the same age as me and has a similar diagnosis. We became really good friends. Although my family and my significant other have tried to be there for me, having a friend who understands and can really relate to my experience is astronomically helpful.
I've signed up to be an MS mentor through the National MS Society. My role is to talk to other people with the condition who are going through tough times. Being a mentor enriches my life while helping other people, too.
Therapy is another tool I've used to cope with my diagnosis. My dog helps, too. She's the sweetest, most loving being. She grounds me and calms me down whenever I start to get worked up about something.
Focus on the Positives
When you're in the middle of getting diagnosed with MS, it's easy to focus on all the potential negatives. Now I try to look at the positives.
I worried that I'd lose my independence, but there are lots of people with MS who are still walking and fully functioning at age 70. I worried I'd be viewed as less worthy of love because of my disease, but now I know that whoever loves me will love all of me – including my MS.
I recognize now that whether I keep my physical abilities or not, my life will be every bit as enriched in the future as it is now. Hopefully, new medicines will continue to come out to help prevent the progression of MS and reverse its effects, and I'll be one of those 70-year-olds who are really kicking it!
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SOURCE:
Stephanie Adams, pediatric oncology nurse who lives with MS, Philadelphia.
