With MS, getting what you need often requires self-advocating
Speaking up about your needs is crucial to getting the best treatment
Just before my last deployment, I remember sitting in a classroom with other Army Special Forces medics, listening to the representative from a supplier of chest injury dressings. It was common practice for suppliers to send someone to talk about or demonstrate their product as part of the contract. Often, this was a good thing, but a number of us were starting to lose interest in this one. The presentation was sounding like a sales pitch, which wasn’t necessary; the Army had already decided to buy the dressings, whether we liked them or not.
We didn’t — mainly because the adhesive on the dressings was of very poor quality. When a member of the (captive) audience brought this up, the representative said that his company had gone with a different subcontractor for the adhesive and it didn’t stick well to sweaty, bloody, or hairy patients. Since bloody and sweaty described just about any patient who needed such a dressing, and about half of those were hairy, this seemed like a pretty big deal to us.
We weren’t sure what exactly he thought we did, but we were sure of one thing: As was usual with Army bureaucracy, neither the person who sold those dressings nor the person in the Army who decided to buy them had ever touched one or would have to use one in a real scenario.
It is often the same way with multiple sclerosis (MS).
Being honest with ourselves — and others
I’ve said before that my neurologist is wonderful and has my complete trust, but he doesn’t have MS. For the most part, this is a good thing. I’d like to think that I am completely rational and make nothing but rational decisions. The truth is, I’m probably about as desperate as anyone else with this condition, and it’s most likely to my benefit that my doctor has a natural separation from the disease he treats. At the same time, I have to keep in mind that he will never have to try any of the medications or interventions that he recommends.
I’m sure the therapists who taught me how to use various mobility aids had at least put their hands on one before. The therapist who showed me the proper way to use a rollator obviously had experience with it, but only as an able-bodied person. Stepping around the therapy center on two perfectly functional legs is a little different from being completely dependent on an aid and using it every day. I was very fortunate that my therapist understood this. My feedback based on my unique situation was key.
I have learned that when it comes to accessible bathrooms, hotel rooms, and most public spaces, the people who designed them are probably not disabled. In some instances, when it comes to wheelchair-accessible spaces, I often question if the designer has ever even seen a wheelchair before. I’m not implying that I think anyone is deliberately trying to thwart me, but I am saying that they’re not me. For instance, I now know when choosing a hotel room to ask for a roll-in shower rather than just an accessible one. I suppose a bathtub with grab bars is accessible for some — just not for me.
This is where self-advocacy comes in. The person treating you may very well have your best interests at heart, but they will never have your firsthand experience. Even if they did have MS, they wouldn’t have your version of it and would be wise to listen to your feedback. Providing honest commentary on what works for you and what doesn’t is crucial to receiving the best treatment.
I have a tendency to be agreeable — maybe too agreeable. Too many times I’ve said that I would manage, or that something was fine and working OK when it could’ve certainly been better. A good advocate would never go along to get along. We’re all supposed to be our own best advocate, but we can’t be unless we’re honest with ourselves.
The situation described at the beginning of this column was fairly common in the Army. You got what you got and either found a way to make it work or found something else that worked. In an odd way, military bureaucracy taught me advocacy long before I needed it with multiple sclerosis.
I should probably be more grateful.
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
VS Gelb
Benjamin, Thanks so much for all of your columns.
Benjamin Hofmeister
You are so welcome! Thank you for reading them.
Bonnie Porcelli
You get it. Easily relatable. Love every article you write.
Benjamin Hofmeister
Thanks Bonnie! They say you have to "get it" in order to "get it". I wish that neither one of us got it, but I'm so thankful that there are others out there who get it.
Brenda
Thank you for your honest take on self-advocacy. It's so easy for health professionals to helpfully say it's important to advocate for ourselves but like you said, they haven't experienced what it's like to do it and might not expect that it presents challenges to people living with MS and other chronic diseases. I have spent a lifetime working in design and communications, have advocated for two parents and a child managing their conditions – and yet when it came to my own, I keep finding myself sliding into polite agreement or compliance with a positive spin presented by a doctor that doesn't actually reflect my experience. I'm not even a person who friends who describe as polite! I appreciate your positivity but I think it's just that the dynamic of communicating in the doctor's office is loaded and more complex than health professionals who aren't psychotherapists will manage. I find it frustrating and frankly, it pushes me away from office visits.
Benjamin Hofmeister
Thank you for reading and commenting Brenda! I'm not as good at selfadvocating as I would like to be, but I'm getting there. I am so fortunate that my wife who is my designated caregiver per the Department of Veterans Affairs, goes with me to appointments and advocates for me better than I could do for myself. I am learning by her example.
Something I have learned along the way is to ask my doctor medical questions and save questions regarding life with multiple sclerosis for other people with multiple sclerosis.
Patricia Denman
I love this guy. He utters the absolute truth for all of us with motility issues. I don't have MS but my brother does and I have balance issues due to Celiac disease and multiple falls with broken bones. Very few able bodied people understand our needs and like my 5'10" son can't imagine what it is like to be only 4'7" tall.
Benjamin Hofmeister
Thanks for the comment Patricia! If it helps, I'm only 53 in tall in my wheelchair LOL.
Rebecca Holland
This article expressed everything I have been thinking for a long time. It isn’t easy to advocate even when trying. The usual response from medical doctors and nurses to MS related questions is “you need to ask your doctor.” When you see your neurologist twice a year, that is quite limiting.
Benjamin Hofmeister
Thank you for that comment Rebecca!
At one of my first experiences with a support group, I asked about bladder and bowel incontinence which were both big problems when my MS started. I was more than a little stunned when people at the support group told me that they preferred not to discuss anything unpleasant at meetings and that I should ask my doctor those sorts of questions. I should have told them that while my neurologist is wonderful he doesn't have multiple sclerosis and I would prefer to get questions about symptoms answered by somebody who does.
You're right, to check ups a year with the neurologist is a bit limiting. Thankfully I found a peer group with MS to answer all my questions.
Rob Mullins
I was never in the military, but I'm a citizen of the USA
The concept of lifting myself by my own bootstraps means to me to do your best with what you have. The honesty portion of this credo comes with a dose of reality when you find, despite your best effort you are unsuccessful at performing the task at hand. At this point i try to graciously accept help when it is offered (not always easy, but pride slips away when you have fallen, and your face is in the dirt)!
Benjamin Hofmeister
Hi Rob, graciously accepting help took me a long time to learn and I'm still not very good at it. You're right, Pride definitely gets in the way and so does my hard baked ideas of self-sufficiency. It's crazy how living our best life with multiple sclerosis requires us to be humble and ask for help when needed. If you have the secret to that, I would really like to know.