When you have multiple sclerosis, go native to learn more
It's not smart to reinvent the wheel when you're trying to adapt to disease
The Army took me to a lot of different places around the world, and if I spent enough time in any one of them, I often found myself adopting local customs. In the deserts of Afghanistan and Iraq, for example, if circumstances allowed, I usually wore a shemagh, and sometimes a dishdasha, and was glad to finish a meal with a glass of kefir.
I wasn’t going native, as some suggested, nor was I trying to disguise myself. I suppose I was trying to blend in — just not in the way people might think. I wore traditional clothing and ate in the traditional way because the people who’d been living there since the dawn of time probably knew what they were doing.
Columnist Ben Hofmeister wears a shemagh in Afghanistan, in 2006. A local man is behind him. (Photo by Ben Hofmeister)
In those environments, a scarf was indispensable and had a variety of uses. In the dry heat, loose, flowing clothing made from light cotton was the best way to stay cool, and chasing a meal with a glass of beneficial bacterial culture could keep foodborne illnesses at bay. All these traditions were traditional for a reason, and I adopted what made good sense. I wonder why it took me so long to see the good sense in going native with multiple sclerosis (MS).
After I was diagnosed, I didn’t seek the company or counsel of other people with MS for quite some time. I don’t know if it was simply my pride telling me that I could work out this disease on my own, or the thought that I was alone in this fight. It was probably some combination of the two that had me living like I was the first person in this new environment and that I had to start from square one when figuring everything out.
I also think that while I quickly discovered that everybody’s experience with MS is different, I didn’t realize that we still all shared the same disease. My symptoms may not be exactly like yours, and what works for you in getting around those symptoms may not work for me. Even so, we all have something to offer the multiple sclerosis community. That something may just be an understanding ear sometimes, but that ear can be a lifeline.
When the old customs don’t work for you anymore
My problem was that I still had plenty of lifelines from my old culture, and I hadn’t adopted the culture of the people who’d already lived in this one for a while. I think I was holding on to my old lifelines so tightly that I couldn’t see the new ones that would help me navigate this new country. The funny thing was that all I had to do was ask, and the person didn’t even have to be someone who’d lived with MS longer than me. It just had to be someone who’d already gone native.
Not realizing this benefit kept me from sharing anything I’d learned right after I’d adopted the MS culture. It wasn’t as though what I knew was a state secret; I just thought any work-around that I came up with was already well known. What works for me may not work for you, but we’ll never know unless we share. Your way of combating fatigue or spasticity might be similar to mine but shaves five minutes off the process. That may not seem like much, but with a disease that makes time a currency, it’s everything.
Like so many of the lessons I try to pass on, this one is another example of “don’t do what I did.” Ask those you know in the community. Share what you’ve learned as well. This experience isn’t a tour of duty. We have to leave some of our old traditions behind and adopt new ones that work for us. An old idiom says, “When in Rome, do as the Romans do.”
I say that when you have MS, do as the others with MS do. You’ll be glad you did.
March is Multiple Sclerosis Awareness Month, and a column written by one of our peers in the MS community will be published each day of the month. Be sure to read the wisdom and advice they share.
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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Dylan
Hey Ben, very insightful! Thank you for sharing your thoughts and insights. As a 51 year old diagnosed in 2013, I’ve been around the MS block a few times. I enjoy reading your column and broadening my perspective.
Benjamin Hofmeister
Thanks for the comment Dylan! I don't know how insightful I am LOL, but thanks for saying so.
Sigrid Nauwelaerts
Sigrid (55 years old). This article is so great! Just what I experience(d). I was diagnosed with MS in 2017 but I already had it for 15 years I guess. I figured out everything that works for me during my battle to fight the disease: Keto diet, exercise, supplements... It is so relatable what you write and a very good comparison with your experience to GO LOCAL!
Benjamin Hofmeister
Thanks Sigrid! I often say that what works for somebody may not work for me, but that certainly doesn't mean that it won't. It sounds like you are both willing to share and willing to ask. Other people with MS are very grateful for people like you.
M. Noble
What you say makes so much sense. Of course the people native to the country you are visiting have made the best adaptions to live in their environment. Thanks for an informative post. I wish you the best.
Benjamin Hofmeister
Thank you for reading and for the great comment! Yes people who already live in that environment are the best ones to ask about it. I wish it hadn't taken me so long to find out that other people living with MS are the ones to ask about it.
Mary
Bravo to you sir, thank you for this inspiration!
Benjamin Hofmeister
You're very welcome Mary and thank you for reading it and commenting.
Susanne Jones
I don’t do any of this. MS is different for everyone. That I agree with. My MS team tells me repeatedly there is no cure! No shit Sherlock and you still have not answered my question!
The whole when in Rome quote I don’t agree with. I really don’t know anyone that has MS. The ones I have encountered there is not one positive thing that have to say about MS or anything. Why should I expose myself to that?
Benjamin Hofmeister
Hi Susanne! My heart goes out to you, because I have been in the exact same place. For the first years with MS, I didn't want to interact with anybody else who had the disease. I found out very early that we were all different, so I thought that I couldn't learn anything from anyone else. I was that person who thought that because my experienc was unique to me that I could handle it better with no input from anyone else, so why should I listen to anyone? My experience maybe unique, but other people with multiple sclerosis share many of my symptoms and have ways that they have found to deal with them. That is worth sharing.
As for negativity, I didn't really want to hear any of that at the beginning. I wanted someone to tell me that everything would be all right and that one day I would wake up and be fine again. That would be wonderful to hear, but it wouldn't be realistic. I want realistic and that means taking the negative with the positive. It took a little while, but I found a group that was just right for me. We can celebrate each other's victories, no matter how small and no matter if everyone will ever experience the same thing. We also rant, scream, and cry about the hard parts. It is raw and realistic, but always honest.
Tom A
Hi Ben- First thought was you'll get "the everyone is different" response, and you did. Actually, MS is quite similar across most of the board or boards as the case may be. Best advice I got in a "MS working men's group" was an MS specialist that we all ended up going to. He was aggressive and hopeful. It's a shame that social media seems to have replaced the "self-help" groups. I would think the latter would be more authentic. Best "advice" I have from the inside is adult diapers as a safety net. Second bit, learn your rights, keep notes and be careful at work, it may pay for your new home. Getting screwed can be a two way street.
Benjamin Hofmeister
Thanks for that Tom.
Excellent Tenent
Good info.
Wondering how many with M.S. do not realize that their MS intensifying is not actually caused by MS but is brought on by a side effect of the medication they are using. Not everyone can or should use a recommended rx. For some it is helpful and others may have a very different result. Not only MS rx but other medications they might be using for various reasons.
Benjamin Hofmeister
Thanks for that! I take a few medications morning and evening and it blows my mind when people tell me they are not sure what medications they take, or the side effects. Early on, I quickly realized that I was taking some medications just to counter the side effects of others. The one that comes to mind is when I was taking an off label medication to deal with fatigue and took another one to help me sleep at night because I was taking the first.