The Underground World of MS: Part 1

By Alene Brennan

My first reaction when I received the diagnosis of Relapsing Remitting Multiple Sclerosis? Do NOT tell a soul. People would judge me and put limits on me. Not to mention I was 37 years old and single. MS isn’t exactly the trait I wanted featured on my online dating profile.

I kept my diagnosis a secret for more than a year.

I masked my symptoms as if I was contending for an Oscar.

I got creative as to reasons why I couldn’t join my friends in hot yoga, why I didn’t have the energy to stay out late, and why I always had to special order my meal at restaurants.

It “worked” in that nobody caught on. However, the more solid my external world remained, the more unstable my internal world became. Living a disease that nobody sees or knows of is incredibly… incredibly isolating.

The irony was, I was never part of a bigger community. I was part of a massive underground world of 2.3 million people living with this unseen disease.

So, if we’re doing the quick math – and sprinkling in a little Kevin Bacon six-degrees of separation – you likely know someone with MS… you just may not know it. Or maybe you are one of the 2.3 million.

Why MS is an “underground” world
For the sake of this story, I’m going to make a very broad generalization and divide those living with MS into two camps.

Camp 1: Those that have external symptoms.
Mobility issues that most often require assistance to walk or a wheelchair are the most obvious. Because of their physical limitations, getting out in the world can be a luxury, so their stories aren’t always seen or known.

Camp 2: Those that have invisible symptoms.
Fatigue, intense pain or visual disturbances just to name a few. These individuals look “healthy” on the outside, but their body can feel anything but normal on the inside. This is the population that I was most surprised to learn existed but it’s also the one to which I was a gold star member.

Fearing the stigma around MS, many of the people with invisible symptoms chose to keep their diagnosis a secret. It’s actually not hard to do.

In fact, during the year that I was trying to keep my diagnosis on the down low, one of my friends – one of the very people I was trying to hide it from – was doing the same exact thing to me! She received the same diagnosis I did but wasn’t telling anyone. It wasn’t until I began sharing about my diagnosis that she sent me a beautiful and deeply emotional letter about her underground world of MS. I could hear the relief in her words that she finally had someone to connect with.

It made me realize the struggle that many of us experience in our daily life. On the outside, we “look good,” but on the inside, we’re craving to be seen and understood. That’s what ultimately inspired me to share my diagnosis so publicly and help to lift the veil on this underground world.

The reality is, even if they’re open about their diagnosis, without external symptoms, people act as if it’s not a real disease. Living in a visual world, if you can’t see it, it doesn’t exist… except to the person with MS.

The struggle with multiple sclerosis is real regardless of whether you can see the symptoms or not.

Stay tuned for Part 2: How to Navigate the Underground World of MS.

*Alene Brennan works with individuals living with MS and other autoimmune diseases to create a diet and lifestyle that will support their healing and disease management. She holds four certifications: nutrition coach, yoga instructor, personal trainer, and natural food chef. You can learn more about her work and follow her blog, recipes, and more at www.alenebrennan.com. Check her out on Instagram and Facebook, too!

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About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

Comments

  • Kevin Keplinger says:

    Just wondering, have you ever heard of HSCT?? The real underground world of MS is the HSCT community.

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