Navigating the stigma that accompanies invisible MS symptoms
It can be exhausting trying to prove the legitimacy of my struggles
In the world of chronic illness, people tend to be perceived differently depending on the visibility of their condition. Some illnesses are easily noticeable while others aren’t, but both pose significant challenges to day-to-day life.
I’ve been living with relapsing-remitting multiple sclerosis since 2016, and for the most part, my condition has been invisible. A few years back, I dealt with tremors in my hands that progressively worsened, but then subsided. Today, none of the multiple sclerosis (MS) symptoms I experience are outwardly apparent.
On top of dealing with daily MS difficulties, I must navigate the stigma surrounding invisible illness. At first glance, most people wouldn’t guess that I live with MS because I “look fine.” The idea of “looking fine” or “being normal” is extremely invalidating because it erases my lived experience. What does “normal” even mean?
Personally, I have always felt the need to explain and justify my condition to others, which is mentally and emotionally exhausting. Throughout my time in school, a number of people have dismissed me as “lazy” or “weak,” claiming MS must be all in my head because they can’t see the symptoms.
There have also been moments when healthy people try to compare and compete with my symptoms. For example, when fatigue gets the better of me (which is most days), I’ll emphasize how tired I am. Others have retorted, “But you didn’t do anything today. I should be the one complaining.”
During these instances, I’ve had to advocate for those living with MS and other invisible illnesses. But we shouldn’t have to prove to others that our conditions and daily challenges are legitimate. After a while, educating others and justifying my reality become extremely tiresome, especially when people don’t care to hear what I have to say.
While advocacy and awareness about invisible conditions like MS seem to be growing, a considerable amount of work still must be done. Whether someone’s condition is visible or not, it’s important that we try to be as understanding as possible, because the obstacles and limitations are undeniable.
Just because you can’t see someone’s symptoms and challenges doesn’t mean they aren’t real and debilitating. We’ll never be able to completely understand another person’s reality because we aren’t living it ourselves, but kindness costs nothing.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Lilly
My most favorite is when someone tells me to sleep better at night that will help the fatigue. Or another favorite you aren’t eating right that’s why you are tired. And always you look so good you must be doing better!
Lilly
One more, you are in grad school! Of course you are fatigued. You must be doing very well health wise you are in grad school!
No, I understand it’s hard to feel what others are feeling but please be kind and understand I have learned through unfortunately many years to live with pain, exhaustion, fatigue, tremors, double vision to just keep going and live through it.
Finally, always be kind and generous with what you say everyone is going through something!
Tom A
In grad school I did well with assistantships, no supervisors ever questioned my needs or symptoms if they were visible. They were eager to help. No discrimination there. Then the real world of work came, and it was quite troubling being questioned by others (in similar roles) who were not offered the same options. If they had power over you, watch out. I'd say 50% of co-workers were nasty and had not a second thought about screwing you because (I guess) they believed you were somehow screwing them.
So in hindsight now, I'd be real careful about disclosing MS. It's sad but true. Some people truly suck. One company did pay for the down payment of my house (from a lawsuit). So keep good notes and make trusted friends when it's possible to do so. They can help. And watch what you say to others (in my opinion).
Betty Stoddard
Desiree, here in my area is the saying "You go/grow, Girl". One of my bestest, a feminist, sent it to me recently!
I pass it along to you...knowing you understand, get it, and live with "invisible symptoms" of MS.
Yes, we understand being a person with MS (whatever the symptoms).
Yes, we 'go with' & get it...life in each moment.
Yes, we 'grow' into the persons we are.
Our perspectives reflect life with MS's "invisible symptoms".
"You look so well." Now I wish I'd kept track for total of those 4 words. At first I felt like a beauty queen!! Realization dawned. Many of our symptoms are invisible.
Thank you for sharing your story...one that I, too, understand very, very well. Diagnosed in 2016 with late-onset Primary Progressive MS, the same year as you. The years have brought new symptoms--visible and mostly invisible. I applaud your desire and wisdom to advocate for us humans with MS. We need you! You go/grow, Desiree! Best, Betty