With multiple sclerosis, there is no short or easy answer
Living with my disease can't always be boiled down to a simple, pithy response
Although it wasn’t his field of study, my father has always been a history buff. On breaks from school, our peers visited theme parks, where they tried out death-defying rides and attempted to eat their own body weight in sugar. My sisters and I, on the other hand, were dragged to historical locations such as battlefields and forced to learn, even while we were on parole from the classroom.
He’d stop at various spots and ask us if we knew what happened there. When we pointed out that such information could be found on the helpful bronze and marble monument nearby, he’d inform us that such markers were for the tourists alone. We debated telling him that we were tourists, albeit unwillingly, but decided to keep our mouths shut and let him give us the entire story.
We’d then learn about how a young lieutenant had sneezed and moved his head just in time to have a musket ball miss it and hit his piece of toast instead. That lieutenant went on to invent the splashless urinal cake based on the shape of this toast, thereby changing public restroom hygiene forever. It wasn’t anything that helped us pass a test, but it was useful information. If nothing else, it taught us to always specify that we wanted the short versus the long answer when asking our father a question.
The word “buff” implies enjoyment of a particular subject, so I wouldn’t say that I’m a multiple sclerosis (MS) buff. I wouldn’t call myself an expert either, but I do like sharing what I know with anyone who asks. The problem is that I’m in serious danger of also turning people into unwilling tourists when they don’t specify that they only want a short answer.
And the problem with that is that there’s no short answer because MS is very much a long-answer condition. The short answer to why my leg is moving like that, for instance, is to simply reply that it’s spasticity. That would work if everyone knew what spasticity is, but the majority of people don’t. There’s no way around having to explain the symptom and then what I’m doing to combat it. The best I can do is summarize where I can and use metaphors or analogies for the rest.
The problem then is that no one specifies if they want the long answer or the short answer. People who want the short one, or none at all, normally just don’t ask. The ones who do ask usually just want the short answer, but it’s difficult to tell and I have a tendency to want to talk about MS and my family’s life with it. I didn’t realize at the beginning of that life that I’d have to learn how to read people like a poker player just so I wouldn’t bore them to tears.
When being brief is inadequate
Occasionally I get asked how I’m doing, and I usually just say I’m fine. Both I and the person making the inquiry know that I’m not, but in response to this customary question, I offer the customary short answer. It feels a little dishonest, probably to both of us, so I’ve taken to saying that I’m fine “for me.” That may not be the entire answer, but my definition of “fine” is flexible and feels valid as an answer when I can tell that someone just wants me to keep it short.
When I see a doctor or other provider for something that’s not related to MS, I’ve found that they often just want short answers, too. Now, I’d argue that everything in my life is related to MS, so what they get is a short “medical answer,” which would probably be a long answer to anyone else. I can usually skip the analogies around them because they know the definitions of all the big words and symptoms.
Doctors might wish I gave them the short answer sometimes, but the one person who always gets the long answers is my neurologist. He has to deal with all my questions, too, and they’re rarely short. Not everyone does this, especially not random people who are just being polite, but I figure my neurologist bought a ticket to my long questions and answers when he decided to specialize in MS. In my mind, that means he has to stay for the entire show.
If you’ve made it to the end of this column, that means you too decided to stay for the whole show. MS is not a very entertaining plot line, so thank you — and I’m sorry, all at the same time.
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
Ian R
Short answer: MS is a life shortening disabling disease.
That’s it in 7 words. My aunt died of MS in her early 50s. Teri Garr (actress) got to 79, but had been using a wheelchair for a number of years. I don’t know anyone with MS who got into their 80s or beyond (I’d be interested if any readers know of anyone).
Living with MS - I’d argue it’s two words “living hell”. You go to bed Ill and wake up Ill. You lose your independence / dignity. You know your dreams for the future have been shattered. You’ll lose most of your hobbies - particularly those involving exercise - tennis, running…. MSers are seven times more likely to commit suicide - which gives you a sense of how awful it is, particularly when it’s advanced.
The only question for an MS neuro is why you can’t get me better or at least stop me from getting worse? You might want to ask your neuro this. We are too polite and skirt round the real issue. There was an interesting article about cancer treatment advances over the last 20 years - particularly skin cancer, testicular cancer, breast cancer. Really impressive. Sadly I don’t see the same for neurological disorders and it’s not for lack of research funding. If any one asks me about my MS (21 years +) the only comment I give “make sure you don’t get it”.
Benjamin Hofmeister
Thanks for reading and for taking the time to comment Ian. You've actually given me a great idea. I can see myself throwing the ball back in my doctor's Court, or really anyone that asked.
Multiple sclerosis is a debilitating, sometimes humiliating, lifelong disease, with no cure yet. How would you feel? I wouldn't even say it, or mean it harshly at all. It would just be a genuine question that would make someone without MS have to consider how they would handle life with this disease.
Lisa Kandel
When I'm asked how I'm feeling, I usually say okay or "could be worse", "could be better". My family can tell when I'm not feeling well just by looking at me. And I tend to get very cranky (like a baby) when I don't feel good. I try to put up a good front and have a positive attitude every day, but sometimes I'm worn down and I can't even pretend. Like right now, my MS hug (which is pretty constant for me nowadays) is bad. I have pain and pressure. A couple of years ago, I would have panicked and ran to the emergency room thinking I was dying. Now I know what to expect. It's summer time, so I'm not having too many great days. It's very hot here and humid. It sends my MS into a tailspin. Yet, I remain hopeful and blessed and grateful for another day. AMEN.
Benjamin Hofmeister
Thanks as always for the comment Lisa! I've caught myself saying those exact words. Usually, I'll just say it could be worse, but it could be a whole lot better too.
Merlene Cook
Good read to the end. I too have to master the crowd. When they start shifting in their chairs or quick glances away, I need to bring closure to the conversation. Also, when they come over to seat close to me, I then have to give them permission to leave and mingle with others. Having to go to the bathroom (whether needed it or not) is always a good escape plan!
Benjamin Hofmeister
I sometimes think that I need to invent a device that plays walk off music like at the Academy Awards. That way if someone asks how I'm doing, I can hand them that and say when you've had your limit, just press the button and I'll know that it's time to wrap it up. Of course it would probably hurt my feelings when people press the button after 30 seconds.
Joy Kohout
I was diagnosed with primary relapsing MS in 2003, approx. three weeks after I sustained a tibial plateau fracture of my right leg after falling down the stairs on the 20th floor where I worked. I had no prior MS symptoms, nor was I seeking any medical care for anything at the time. In the fall I also sustained a concussion, when I slammed me head into the emergency fire door at the bottom of the stairs.
I knew I had to get back to my office and get help, so I was able to pull myself up and continue down two flights of stairs to my office.
I would like to also mention that this fall also pushed me into premature menopause. I had my last period in Dec. of 2002 and the accident in January of 2003. I was 45 at the time.
Since then, in 2017 I suffered a broken right femur.
In 2021, I sustained a right hip fracture and was diagnosed with osteoporosis.
I have been using a wheelchair and/or scooter since 2017.
I try to always have a smile on my face.
When asked how I feel, I always reply fine. I AM FINE. I AM HAPPY. Life continues even in the most challenging circumstances.
Julia
And again, he nailed it. From the fun war-holidaytrips,(i have the questionable pleasure to have seen 6 nazi-camps and swam at all the Normandy beaches before the age of 12), the nice little chats with friends/total strangers, up to the waaayy to long a conversations with my neuro. From hìs perspective that is. I thought it was just me, boring the hell out of people with my ms-lectures.
Ps, i always ask someone if they want the socially acceptable answer, or a truthfull one. If they hesitate to long, i say i will make it easy for them, pick the first one. Or i respond to the "howareyou" with an "ask me in about a week, maybe i will answer truthfully.
Benjamin Hofmeister
Thanks Julia! My other favorite comment is when someone asks how I am and when I answer truthfully, they seem surprised. "But you said you were fine yesterday." I was fine for me, but that was yesterday.
Lynn
Great article as usual! I always enjoy them. You definitely have a talent for writing interesting and informative and humorous stories. Thank you.
PS I have had MS since 1990.
Benjamin Hofmeister
Thank you for reading them Lynn and for taking the time to add comments. Funny, my kids don't always appreciate my humor judging by their eye rolls. I'm very happy to know that someone does.
Robert Brockbank
I really like your posts. I always read them all the through. Most are insightful and educational and some are joyful and inspirational. My path with MS has been much shorter than yours but you have helped me stay on it. For this and all I’ve gained from your posts I am very grateful. Thank you.
Benjamin Hofmeister
Thank you Robert! A few years ago the statement, "I can't save you. I can only tell you how I saved myself.", wouldn't have made much sense to me, but now I'm starting to relish the role of maybe being able to add to someone's Survival Guide. It helps me to know that I might have helped you. Thank you
Mary Walker
That made me laugh out loud remembering the “vacations”, its why I refuse to tent camp to this day! And your pithy responses to Dad’s question “do you know what happened here” usually had us chunked out of the car and told to run the ditch and meet them on the other side😂
denise egan
Enjoyed this article, thank you. I, too, tend to give the short answer (where possible but not always) Glad you understand this whole concept 🤩👏
Benjamin Hofmeister
Thanks Denise! I'm glad you do too, although I wish neither one of us ever had to understand this whole concept.
Sara O.
Thank you for your thoughtful column. As the partner of someone living with MS, I know there is never a short or easy way to describe what it's like or how to help. Over the years we've found that small adjustments — like a balanced diet, gentle exercise, stress management, and natural supplements — can make everyday life a bit easier. I gathered many of these ideas on a site I created to share with other caregivers: https://multiplesclerosis.healthytreatment.org. I hope it brings comfort and connection to those feeling overwhelmed. And like you said, sometimes the best support is simply listening and being there.