Your perception of multiple sclerosis probably isn’t my reality
Each case of MS has its own unique characteristics, I've come to believe
There are several good reasons why you won’t see me in television commercials for multiple sclerosis (MS) treatments anytime soon. For one, I’m not much of an actor, despite my brief moment of high school fame. For another, even though I wouldn’t go so far as to say that I have a face made for radio, I will say that I don’t have the voice for it. I could be wrong, but I doubt anyone wants to hear my increasingly weak and hoarse croak in my deep Southern drawl.
Those concerns aside, the actual reason I won’t be a pitchman or performer is that I wouldn’t be a good representative for the medication. I have primary progressive multiple sclerosis while most people with MS have the relapsing-remitting variety. I’m pretty disabled compared with many with MS and wouldn’t be a good image of an average patient, much less the one advertisers would like to show.
And I don’t begrudge them that choice. After all, it’s advertisers’ job to create a commercial that shows their products in the best possible light — and here, that means it’d prompt a doctor to prescribe the advertised disease-modifying therapy (DMT) and persuade patients to ask for it. What I do begrudge is that your average person is likely to base their perception of life with multiple sclerosis on what they see on TV. That’s often a problem because my reality, and all of our realities, are very different from that televised image.
What I’ve learned
I have the authority to say that because television is where my perception of MS came from, at least until nearly two years after I was diagnosed. Nearly everything I knew about the disease before my diagnosis (which was little more than its name) came from some form of advertisement.
Amazingly enough, the neurologist’s revelation that I had MS didn’t immediately enlighten me with all there was to know about life with the disease, either. I spent the first 20 or so months trying to learn about MS from an outside perspective by exploring all I could about the disease itself, but little to nothing about the patient who had it — me. That led to confusion, second guessing, and wondering why my course of MS wasn’t going exactly like someone else’s.
I’d say that I know more now, but what I mainly know is my own experience. And the most important thing I know now and didn’t get from an advertisement is that my day-to-day reality isn’t yours. Multiple sclerosis is not a one-size-fits-all disease
There are vast differences among people with MS when it comes to their symptoms and experiences. That’s what comes to my mind when asked what I’d like people to know the most. Your perception, which could have come from an advertisement, a book you read, or your one relative with multiple sclerosis, isn’t my reality. I also have to be aware that my reality isn’t the same as another person’s with MS. Multiple sclerosis is not a “one size fits all” disease.
This quote may have originated with another condition, but it’s become one of my favorites for ours: “If you know one person with MS, then you know one person with MS.”
According to the National Multiple Sclerosis Society, more than 2.8 million people worldwide have multiple sclerosis. To me, that means over 2.8 million individual experiences. With those numbers, it also means that MS isn’t exactly a rare disease.
Each case of MS is definitely unique, and that’s an awareness that deserves to be spread on today’s Rare Disease Day, or any day.
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.
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Comments
Tru
Hi Benjamin,
"If you know one person with MS, you know one person with MS." I laughed reading this, a factual statement that is light but powerful, and one that communicates the accuracy of the matter. We are people. We are different people, MS or not. We have different experiences. We have different types of MS. We experience different manifestations of the disease. Therefore, we have different experiences. A perfect truth!
Rare or not, we exist.
Benjamin Hofmeister
Hi Tru!
You are 100% right. That's why I keep reiterating to fellow MS suffers to find a neurologist who treats them (the patient) instead of the disease.
Chris
Your column is spot on. I learned about my relapsing remmiting m.s from everything I read after my diagnosis in 2009. I have other illnesses as well so every time I see a doctor they have to check with my consultant to see if it is m.s related or not.
I would not even know if I have second stage m.s or not, it's all still vague, no one tells you anything.
My symptoms have increased in the last year, I also have some new symptoms.
I have not seen my consultant for over a year and my next appointment is not for a couple of months yet.
Benjamin Hofmeister
Thanks for reading it Chris. When it comes to other illnesses and injuries, I've learned that they're not all related to MS, but they're all effected by it.
My increasingly worsening shoulders weren't caused by MS, but turning them into my primary weight bearing joints because of MS mobility issues is making them worse.
john passman
Mywife sister had MS and past away at 57 the only last thing she could move was her eyes. it was so sad and heartbreaking..
My wife Pamels nursed her for many years, but now she has ms P.Sec. and now she only gets up for 1 or 2 hours a day.
To top this off last sept. 23 she had a stroke and brain bleed which nealy killed her. getting help from doctors therapist here in the uk is a nightmare.
john
Benjamin Hofmeister
I'm so sorry for what this disease has done to your family John. I had no family history at all and that helps ease the worry that I might have increased my children's chances of being diagnosed. Eases it, but never erases it completely.
Joseph
Even as an MS sufferer, I am constantly surprised for the range of symptoms I read about. “ if you’ve met one person with MS, then you’ve met one person with MS.” is so spot on.
I would simply temper that sentiment, when it comes to treatments. Luckily, it’s becoming well established now that aggressive DMT or HSCT early is vital to try and prevent long term disability. This certainly doesn’t preclude individual preferences but I think it’s important we don’t backtrack on years of fighting against the established treatment path of “waiting until you’re worse”. One size doesn’t fit all but it does ‘fit most’ when it comes to treatments
Benjamin Hofmeister
Hi Joseph! I think I like "one size fits most". It reminds me of an article of comfortable clothing.
Thank you for that and for all your comments.
Heather
First, thank you for your columns. I’ve learned so much from you as you share your MS experiences. I have had MS probably as far back as 1978 while attending college. Loss of vision in one eye. At that time who knew? My first DMT was Tecfidera when it became available as a treatment and I use it still. I’ll never forget the commercials on television for the drug with a woman diving off a diving board and rolling my eyes. It gave people the idea that this is what your life could be like including my friends. Seeing these types of advertisements give a sense of hope but are often misleading to those people on the outside. Walking (and skiing!) still happen in my dreams. 🙂
Benjamin Hofmeister
Thanks for the comment Heather! I occasionally get the, "Why are you in a wheelchair?" question and when I say it's because of multiple sclerosis, the follow up is, "But MS just makes you tired. I know a couple people with it and they walk fine. Are you sure you're on the right medicine?".
MS awareness for me is that our cookie cutter similarities as people with MS started and ended with our diagnosis.
J Smith
Your experience with MS is much like mine. Most everything I read is not applicable to my PPMS. It progressed quite rapidly from can to walker but has slowed down. I think the theories about being its own disease are right on. Thanks for your thoughts.
J.Smith
Benjamin Hofmeister
Thanks for reading and relating (although, I wish we didn't have this in common).
Arenita Hall
Thank you for your column. When I was told that I have Multiple Sclerosis the doctor told me to go home and to take my daily shot of Copaxone and wait to be in a wheelchair and die!! He was a professor in a college teaching neurology! That was in December 1999. I worked for 8 more years before I left my job working as a SRNA in a hospital because of balance issues. I felt like it was unsafe for the patients and myself. Didn't lose my ability to walk until after 2014 when I had a bad UTI and found out I the start of kidney failure. I stood up and hit the floor in my hospital room. Haven't been able to stand since. Now after that I have an AWESOME doctor! I still have trouble with my arms and hands but able to use them. I try to encourage people that have this disease to NEVER STOP fighting!!
Benjamin Hofmeister
Thanks Arenita!
Never stop fighting....that's so right! Once I stopped fighting myself, things improved even if my MS didn't. You're right about choosing doctors too. Having the right one makes all the difference.