My nonprofessional take on the psychology of multiple sclerosis
Sometimes I compare my life with MS with Stockholm syndrome
I’m not a psychologist, but if you’re a regular reader of my column, you know that I’m intrigued by the subject. I seem to be particularly drawn to unusual conditions and making amateurish comparisons to multiple sclerosis (MS). In my defense, MS has odd symptoms, so I feel somewhat justified in doing so.
One that piqued my interest recently is Stockholm syndrome. Despite its name, it’s not really a syndrome, but rather a “psychological response to being held captive,” according to the Cleveland Clinic. This emotional bond that captives develop with their captors includes identifying with their agenda and demands. Are you starting to see my connection between Stockholm syndrome and the disease that makes me feel like a captive?
Multiple sclerosis has not been a kind captor to me. It took from me a career and a few relationships, and isolated me by ending my ability to walk and to drive. I’m not being used as a bargaining chip, however, so I don’t necessarily think of myself as a hostage. I suppose I’m more like a prisoner held captive by my disabilities. Our individual experiences with MS vary, but all of us at some point might feel like captives due to our MS-related limitations.
A survival instinct
With Stockholm syndrome, a captive is forcibly dependent on their captor. After becoming accustomed to bad treatment under horrible circumstances, an imprisoned person might see any type of respite as kindness. They might even associate their captorās happiness with their own. This, in turn, can make them feel animosity toward anyone or anything that threatens that relationship. At its core, Stockholm syndrome is a survival instinct.
The emotional response to multiple sclerosis is a little different. Our captor isnāt a person or other physical entity, although we may often think of it that way. The will to survive and thrive is definitely present, and there might be dependence, just not on our captor. We’re not dependent on MS, but rather because of it. I might be splitting hairs here, but it feels like an important difference to me.
I do sometimes view a good day after a string of bad ones as “being treated well.” This is probably a case of my taking the anthropomorphization of MS too far. After all, it’s not as though the disease is capable of being kind or happy, so thereās no reason to form a connection. I still sometimes catch myself thinking that if I’m a “good captive,” then MS might give me a break. There’s a chance that this imagined relationship is why I feel suspicion or even animosity toward anyone who suggests a change in my treatment regimen or disease-management routine.
So how do we mitigate this kind of psychological response to the conditions imposed on us by MS? The empowerment and confidence that come from past experiences is a big part of minimizing it. So is the calming and supportive nature of others who face a similar experience. Thatās why MS support groups and forums are so important for resisting the kind of “Stockholm syndrome” that seems to come with a chronic condition.
I thought of another reason for my fascination with psychology. During my former career in the U.S. Army Special Forces, I had a couple psychological evaluations. The results wouldn’t have gotten me hired at a bank but were perfect for either being a Green Beret or writing a weekly column about multiple sclerosis.
OK, I made that last part up, but it was remarkably easy to transition into this role.
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Comments
Leanne Broughton
After many years of being "captive" I have adapted to my role as dependant. I hardly remember myself as independent. In earlier days of MS I used to drive myself crazy with inactivity. Now I am completly complacent. Time just passes without purpose, pleasure, activity.
Benjamin Hofmeister
Hi Leanne! Your comment reminded me of a column I wanted to write about shifting goals and purpose (does it change...
I'm not sure) after multiple sclerosis. I haven't gotten my head quite wrapped around it all yet.
Stay strong
Ben
Catherine
Hi from South Africa , I was diagnosed with MS in 2008 . I am still going strong , I battle walking and am falling at least 2x per month. I take chronic meds , vitamins .
Benjamin Hofmeister
Hi Catherine! Keep going strong, it's the best we can do.
Tom A.
Well Ben, I was a psychologist. PhD educated, licensed and all, not like some without the education and experience who nevertheless call themselves that. Your background experiences fit the military aspects and you became that, which then fit some of the perspectives you take now. Thatās fine. Always good to be aware of who and why you are.
You focus on the captive element of the definition. It is worth noting that there really isnāt anything clinically scientific about the theory for psychologists. Itās kind of a sociological concept which was coined by a psychiatrist. Psychiatrists have little actual psychological training (at least here in the US), but they are an MD. The syndrome is just a catchy idea- becoming friendly with something that is out to get you. In this context of MS, it brings up an interesting split of perspective that you can see people take. Is it coming from outside me- an entity I must fight (EBV for example), or is it part of me (the unique genes I have that turn EBV into a disease for me but not others)? If itās āa part of meā, maybe itās something I shouldnāt be fervently hating with disgust? But no one wants to be friends with the thing thatās out to get them. Nevertheless, I lean towards āthatā. At some point you shouldnāt really hate yourself fervently, your genes are part of yourself and youāll need to get as much out of the mix as possible. Some people get MS, but how they come across to others is still important. I would back off a bit on the extreme stuff which seemingly demonstrates oneās angst and toughness in āthe fight against MSā. I donāt know why the Cleveland Clinic brought it up and Iām going to play lazy and not look it up.
Benjamin Hofmeister
š I knew about your background and was really hoping that you'd chime in with a detailed comment. You donāt dissapoint. Thank you!
Kathy B
Thank-you for your insights, Tom. I have had MS for nearly 30 years now. Just like you, I have my strategies for combatting its limits. I use a walker around my home and an electric scooter (attached by a bar lift to the back of my car).
Those who do not have MS should be wary of attempting to educate those of us with this foul disease.
I do not discuss my disease with my friends and refuse to let them bring up the subject because I have found the visit turns into a so sad to be you" conversation rather than a fun update on how everything is going. I try to find ways to make my life better, and dwelling upon what I can't do is not one of them. Luckily, I am one with a "glass half full outlook."
Unfortunately, I can't currently run a marathon, but I could never run a marathon (only a half marathon).
David Holzman
My mother had it (my siblings and I were spared). My maternal grandmother, who died well before I was born, had it. A maternal cousin has it. My mother fought it until a stroke led fairly quickly to her death. She had always exercised, and her last 17 years she had an English racing tricycle that was light and relatively easy for her to pedal, although my father had to help her on and off of it. She rode 3000 miles the first, I don't know, maybe 7-8 years she had it, and another 2500 the next 10 years. She swam in summer, and the cold water in the Cape Cod pond enlivened her. She was an intellectually lively companion to my father, and he was devoted to her.
I sure wish we'd known about the benefits of cold water suits and large doses of vitamin D for people with MS when she was still alive.
Now I have a small email list of people with MS to whom I send info. Old habits die hard.