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MS: The Part Your Doctor Doesn’t Warn You About

Jennifer Adams
MS: The Part Your Doctor Doesn’t Warn You About

Living with a chronic condition is as emotional as it is physical. My doctor prepared me on how to handle the physical, but I wasn’t prepared for the emotional weight of the reality of my new life with MS. With no guidance on how to handle my new reality, I was left to navigate the most stressful time of my life.

The Shock of Diagnosis

I was diagnosed in May 2020, during the COVID-19 shutdown. The diagnosis came via telehealth, where my doctor spent 45 minutes explaining MS, showing me my MRI and explaining the unpredictability of the disease. He prescribed IV steroids to calm my flare, and we decided on a DMT. I was told that regular exercise, minimal stress and a healthy diet would help alleviate my symptoms. I hung up feeling good about everything.

Five minutes later, reality hit me like a ton of bricks. The future I had dreamt and worked so hard for was gone, replaced with the permanent question mark of MS. 

Stress, Stress and More Stress

After a few days, I recovered from the initial shock, but then the shock was replaced by stress. Extreme stress. My doctor’s guidance of keeping my stress in check - as it could trigger a flare - just became another stressor. I was stressed out about how stressed I was. I couldn’t shut off my brain. It was running 100 miles a minute with constant, intruding questions and fears:

  • What will my future look like be?
  • How do I tell my friends, family and my employer?
  • When will this flare end? When will the next begin?
  • Will I have any permanent disability from this flare?

Understanding My Feelings

My answer to coping with this crippling anxiety was research. I devoured any and all research and studies on MS, in hopes I could better predict and understand this disease. I read every article I could find, joined countless Facebook groups, followed MSers on Instagram and even read new research results. The research consumed me, and soon became obsessive, but I couldn’t stop. 

I went to my general doctor who prescribed me anti-anxiety medication. It helped take the edge off, but I was still obsessing over my future and over-analyzing even the most minor symptoms. From an outside perspective, I seemed happy and would often get compliments on how well I was doing, but I knew inside I still needed help. 

Everything changed when I participated in a clinical trial, which provided counseling for newly diagnosed people to help them handle the unknowns of their diagnosis. The trial taught me that people deal with unknowns on a spectrum, from over control to avoidance, and provided me methods to balance myself. I’d never done therapy before, but I knew after the trial was over that this was something I needed to continue. I have the most supportive friends and family, but a therapist allowed me to be honest. I didn’t have to put a positive spin on my feelings for them, and unlike my family and friends, the therapist could advise me on healthier behavior. I knew this was the beginning of me getting back on track. 

One Day at a Time

My neurologist did a great job explaining the physical side of my MS and my treatment, but I can’t help but feel irritated that there was no education, guidance or tools to help handle the emotional toll that came with my diagnosis. My mental health has a direct impact on my physical health - stress triggers MS symptoms and makes it difficult to stay active and eat healthy.  

More than a year out from my diagnosis, I still have moments of “wow this sucks,” or I get caught up in the “what-ifs” of an uncertain future. I’ve learned to allow these feelings of frustration and defeat, but l’ve also learned how to move past this. Regaining control of my mental health has allowed me to be the advocate I am today and support others living with MS who need a hand. We work so hard to maintain our physical health. Treat your mental health with the same respect.  

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About the author

Jennifer Adams

United States. Diagnosed with RRMS in 2020 during the COVID shutdown. Into cooking and healthy eating. Trying to love working out. Passionate about educating people about MS and working to shatter false stereotypes. Love connecting with other MSers and showing support like others have for me.