Knowledge of MS Progression is its Own Invisible Symptom

By Stacie Prada

Many health conditions and symptoms are never seen by others and remain unknown to the people in our lives until we talk about them. Even then, what our friends and family members see and what we tell them don’t match. The disparity between how we look and how we feel makes it hard for others to believe it’s as much of an issue as we say.

Some of my invisible symptoms are widely shared by many people with multiple sclerosis. There’s fatigue, pain, bladder and bowel issues, spasticity (cramping & stiffness) and dysphasia (trouble swallowing). While all of these are not technically invisible symptoms, they behave as such for me given they’re not visible to others.

I see people in vehicles impatient when I’m in a crosswalk at the end of a walk or jog and moving slower than they’d like. They don’t know my legs are less reliable at the end of a workout. They don’t see how it takes me a while in the morning for my legs to move as I intend. It’s not obvious I’m taking greater care to make sure my feet land firmly and I don’t trip. Some people behave impatiently as if I’m intentionally slowing them down.

When I’m pushing myself to participate in something and struggling with fatigue, people question how I can be too tired to stay one day yet do something very active the next. Trust me, I get it. It has taken me years to understand my body and my limitations as well as I do now. It’s taken a lot of trial and error with frustrating consequences from overdoing it to teach me it doesn’t need a reason, nor does it need to make sense. I need to respect and accommodate how MS affects me in order to live as well as I do.

I think being diagnosed with MS and living with disease progression is an invisible symptom in its own right. It affects the significance we give to MS symptoms and how they may affect our future.

I recently visited a beach where portions of the access trail were steep with fairly treacherous steps to access the shoreline. On the beach, large driftwood logs created an obstacle course to navigate before reaching sand and water. While there, I savored feeling the wind and misty rain on my face, the sound and view of breaking waves, the landscape shaped by water, wind and geological shifts over millions of years, and the song of shorebirds calling to each other. It was beautiful, invigorating and also poignant. I reflected upon how many people I know would not have been able to access this area due to mobility issues. Yes, beach walkers and wheelchairs exist, but this portion of the coast would have required someone to carry them. I took in how fortunate I am that I am able to access these remote areas. I acknowledged to myself that there will likely be a day when I cannot.

I’m guessing other people on the beach experienced being there differently than I did. They likely have their own challenges and hardships that may have made their time there bittersweet too, but for me it reminded me how much I can do and what I may lose.

MS Progression - Invisible SymptomsMS Progression - Invisible SymptomsThis shows how very real symptoms that are invisible and currently manageable contribute to feelings of fear, stress and sadness. The fact that my legs still work doesn’t eliminate the sadness I feel for how they’ve declined over the years. It makes me nostalgic for how they used to be and a little depressed for what may come.

I cope with this by looking at it from outside myself and from within, and I use this knowledge to shape my choices.

  • I try to remember everyone has their own invisible circumstances, and I’m just acutely aware of my own.
  • I aim to refrain from responding in any situation unless I can do so with kindness and compassion.
  • I try to share my condition so that my friends and colleagues can understand why I need to make accommodations for myself.
  • I make an effort to do things and go places that I may not be able to access someday.

Invisible symptoms contribute to invisible experiences. How we feel in a situation can be vastly different than someone else’s while doing the exact same thing at the same time. Knowing this as a fact of life helps me cope and live the best I can.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

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