Common Questions People Ask Me When They Learn I Have MS
Here are a few things people will ask when you have been diagnosed with multiple sclerosis (MS), along with the answers I have given. I’m open to suggestions for better responses, although I think some of mine are pretty good.
“Are you going to die?”
We all are, eventually. But I’m not planning on doing it any sooner than necessary.
“Will you get a handicapped parking pass?”
Some people with MS need disabled parking accommodations, and some do not. Some only need it part of the time. I’m not at the point of needing parking assistance right now, but I will get it if needed. Right now I think there are people who could use it more than me, but I’m not above using the “family” parking at IKEA, which always grated on me anyway.
“Will you be in a wheelchair eventually?”
Hope not. But I want flames painted on the side if I do get one. Not a rocket booster, though. I saw how that worked out for Wile E. Coyote.
“Do you need a cane right now?”
Only if it has a sword.
“But you look so good?”
I paid $25 for this “Make Up For Ever” lipstick, so thanks! But it didn’t replace the myelin in my central nervous system.
“Will you be able to work?”
Absolutely. My profession is not very physically demanding, and I can technically work remotely if I have to. I have filed The Family and Medical Leave Act paperwork to cover myself in case of any protracted medical leaves in the future, but I don’t anticipate any problem.
“Do you know what caused this?”
“Do you have a family history of MS? Did you smoke?”
No and no.
“Have you heard about Epstein-Barre virus (EBV)?”
Yes. I never had mono/EBV. A lot of people do have mono and don’t develop MS.
“Was it vaccines?”
Please just stop.
“Does anyone know what causes this?”
Have you heard of genetic epidemiology? The short answer is: there are some genes and some environmental factors associated with MS. They haven’t figured out exactly which genes and factors are MS triggers, and in what combinations. Stay tuned to science, and keep funding the National Institutes of Health.
“Aren’t you kind of young for this?”
Most people with MS are diagnosed between the ages of 20 and 50. I’m nearly 38, so no.
“What is your treatment plan?
I’m going to be infused with the latest drug available. It’s an immune therapy that will knock out my B cells. I hope it stops progression, or at least makes relapses less frequent and severe. Also, I want some cool mutant superpowers.
“Do you take vitamins?”
I do take a few, for various reasons, including low vitamin D (a deficiency that seems to be common in MS). I’m not going to elaborate because I prefer my medical advice from people with degrees.
“Did you hear about that MS diet book?”
Yes. Really. From several people. I tried kale. I still have MS.
“Do you want the phone number of my naturopath/holistic healer/shaman?”
No. I absolutely do not.
Did you know that I sell Plexus/Keto/Pruvit/essential oils/Shakeology – something I heard about on the internet and could get a cruise for selling enough of?
I’m sure that has much more peer reviewed science behind it than humanized B cell immunotherapy, so great! Enjoy your cruise.
“What if you cut out gluten?”
“What is wrong with you?”
“What can I do to help?”
Honestly? Listen to me complain. Be patient when I don’t make it to social engagements. Tell me dark and inappropriate jokes. Bring me McVitie’s biscuits and tea. Better yet, take me to London. Or Disney World. But if those are out of reach, just be a friend.
If you have a chronic disease, what questions have you been asked? How did you respond? I’d love to hear your stories.
Follow this journey on My So Called MS.
We want to hear your story. Become a Mighty contributor here.
Thinkstock Image By: Alexpoison