Do People Think Your MS Problems Are All in Your Head?

Do People Think Your MS Problems Are All in Your Head?
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Have you ever had a friend, spouse, or even a doctor tell you that you’re imagining your MS pain, your fatigue, or even your sexual problems? “You’re not trying,” they might say. Or, “You just need to exercise.” It happens all the time for many of us, and it’s not unique to people with MS.

But there’s a doctor in Boston who understands and feels your pain, literally. Dr. Alice Flaherty is a neurologist at Massachusetts General Hospital, and as a recent profile in the STAT e-letter puts it, “She likes seeing patients other doctors have given up on.”

“These poor patients are typically seen as just not wanting to get better,” Flaherty told STAT’s Eric Boodman. “What was it about us — the caregivers, family members, and doctors — what was it that made us attribute willfulness to people who were obviously miserable?”

Miserable MS patients post all over social media

I saw an example of a miserable patient on an MS-related Facebook page just a few hours after I read the STAT article. She wrote:

“Do you know what I hate? When I’m having symptoms happening that I can’t control and my husband gets mad at me. Like I’m doing it on purpose. I got dizzy when I got up out of bed and when I turned to get back in bed I fell to the ground and I had some spasms. My whole body started convulsing. And he had to help me get back in bed. Now he is all mad at me. Like I’m doing this on purpose. Saying I need to rest.”

There are similar examples of this problem posted on social media every day.

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It’s NOT all in your head

Dr. Flaherty treats, and consults about, patients who have been told by other doctors “Oh, it’s all in your head.” She’s been told that herself as a patient. Dr. Flaherty is bipolar. She told The New York Times back in 2009, “The psychiatrists said, ‘You should get used to this as your new normal,’ but I never did. It was always alienating when people said, ‘Oh, that’s just bipolar illness talking.’ No, hello — that’s me.”

The key, according to Dr. Flaherty, is for doctors and caregivers — anyone who deals with people who have an illness, really — is to have “empathy.” Merriam-Webster defines “empathy” as follows:

“[T]he action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner. …”

For people who care for patients, I define empathy as the ability to listen to what we, as patients, have to say, watch how we’re forced to live our lives, and then try to walk in our shoes to understand how we feel. Empathy is what the husband of the MS patient who vented on Facebook needs to learn. That shouldn’t be that hard to do.

You’re invited to follow my personal blog at www.themswire.com.

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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 Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.
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Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.

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14 comments

  1. Julie says:

    I went to the ER with another excruciating headache. The ER doctor told me it was the “natural progression of my disease” and there was nothing they could do.

    Actually, there was something they could have done. They could have read the CT scan I had the previous time I went to the ER, or looked at the MRI I had in between.

    If someone had bothered taking a look, they would have seen a large sphenoid sinus infection that was pushing my brain our and up against my head, thus the pain.

    I feel like medical waste. No one wants to deal with older MS patients. I can’t wait until someone comes up with a better “Best Practice” model for older patients with MS. A visit to a neurologist twice a year, and ER visits in-between does not provide adequate or cost-effective treatment.

    • Ed Tobias says:

      Hi Julie,

      I’m so sorry you were treated that way.

      I’m very fortunate that, as I approach age 70, I’m still treated with care, respect and knowledge by the physicians who treat me. There is a best practice model. Unfortunately, there are some healthcare providers who have no desire to follow it.

      Ed

    • Doug Ferguson says:

      Education is not a substitute for brains! Sometimes experience ranks higher. I got rid of most of my MS and am happier for it.

    • Ed Tobias says:

      Wow, Laurie. I’ve been an MS patient for nearly 40 years and I never heard it said that doctors are afraid of lawsuits by MS patients. Why would they think people with MS would be any more likely to sue than any other patients?

      Ed

  2. Christopher says:

    Before my diagnosis doctors had me thinking I was crazy. A respected head of Beth Israel Neurology diagnosed me with Psychogenic Disorders:

    https://www.webmd.com/pain-management/guide/pain-management-psychogenic-pain

    I spent a year working with a Psychiatrist and Physical Therapist, both of which had no idea how to treat me before I was able to get an MRI to confirm I had MS.

    I have had employers, friends and family tell me that I am just lazy. When I finally got the MS diagnosis, my doctor said I likely have had it twenty years given the lesions on my brain. I almost lost faith in medicine and certainly in friendships and the like.

    My last job had me flying back and forth to China every month for four years. I negotiated contracts with every major company in China on their behalf. All the time I was in pain, couldn’t do math in my head anymore, had double vision, they let me go because they said I wasn’t working up to their standards, that something changed for me and I was always not feeling well. I took too many days off for supposed migraines; I felt used and discarded.

    Friends told my wife that she should leave me that I was always tired and she was too young to be with a sick man. When my exhaustion and depression got so bad that I couldn’t brush my teeth, I had to tell people no to an invitation to hang out or go to a play or party. No one calls me anymore, I literally have lost more relationships then I can count. I have learned that people don’t want to be around someone who is chronically ill.

    I could hide my suffering well enough earlier in the progression. No one knew how much pain and discomfort I was in most of the time. My ability to suffer well has become a badge of honor. As my symptoms worsened over time and I needed a cane, I couldn’t hide it anymore. Then something happened, people offer me a seat on the subway, I get to board planes early. Suddenly I was receiving empathy. Now everyone around me could see that I had a real problem; I was tripping and falling in front of them.

    Human beings are such visual creatures, not even the doctors trust you when you say something is not right. Not till they see the MRI image do they believe. I am so sorry that any of us have to experience the callousness of the human experience. It is easy for most of use to discount another’s thoughts or feelings if they don’t align with our beliefs or well-worn meanings. I for one see people through the eyes of suffering and relate to others through the lens of the human experience. Now more than ever.

    • Ed Tobias says:

      Christopher,

      Thanks so much for sharing all of this. I suspect that what you’ve experienced is more the rule than the exception. That’s very sad. “I for one see people through the eyes of suffering and relate to others through the lens of human experience” is the way we should all travel through life. “Now more than ever.” Absolutely!

      Ed

  3. Jane Harmon, OTR, retired says:

    My oral response to the “all in your head” comment is typically, “No, part of it is in my spinal cord.”

    Internally, I’ve thought of framing some images from an MRI, nicely backlit and hung for all to see.

    The story is told of a little boy in church with his family. When he stood up on the pew, his father told him to sit down. When he refused, his father finally picked him up and placed him next to him, this time in the seated position. Crossing his arms, he defiantly said, “All right; I may be sitting down on the outside, but I’m standing up on the inside!”

    After more than 50 years, I’m still standing up on the inside, even though I’m sitting down in my wheelchair.

    Or on occasion lying down on a hospital bed.

    Because I know my position, I expect others, and especially physicians, to learn it from me if they cannot initially see past what they see on my outside. The way I see it, I have an opening for a physician or other healthcare provider; it reads: must be willing to enter into a short-term (or long-term) partnership with me to:
    1. take a full and comprehensive history from me, through the methods which currently work best for me, oral or written, including but not limited to any medical records or statements from previous providers which I may provide. (In my area, personal physicians are persona non grata in EDs and acute care hospitals. Cross the threshold and the patient becomes the property of all-knowing, all-seeing “hospitalists” who have no need to hear from any other physicians.)
    2. work to solve the medical mystery of the moment. If you are a neurologist, there’s no need to diagnose me with MS all over again.
    3. recognize my intelligence when it comes to MS and basic medical things and if in doubt ask me to verbalize my understanding of what you need me to know.
    4. see working with me as an opportunity to learn more about MS. Even living with someone who lives with MS gives you experience with one person with MS, caring for 30 people who live with MS still only exposes you to 30 people who live MS. The variability characteristic of MS truly means there is no such thing as a typical case of MS.
    That being said, a rash is never a symptom of MS and so are many other symptoms. The problem arises when a new, existing or worsening symptom may be a result of MS or some other serious problem. I may even have wrongly attributed it to MS. If it fits with something about which you are concerned, let’s follow up on it.
    5. maintain a pleasant demeanor while we work together. If working with someone with MS is somehow distasteful, frightening, makes you irritable or angry, you need not apply.

    • Ed Tobias says:

      Jane,

      I love your “it’s in my spine” response and your 5-point healthcare provider “contract.”

      All of us need to be this proactive when dealing with the whole healthcare system.

      Thanks for sharing,

      Ed

    • Christopher says:

      Jan,

      It is clear that you have had a lot of experience with the medical system. Your list of wisdom should be laminated and placed into a contract that every Dr. you see should read and sign. We sign so many things when we are under care that it becomes the book of our illness. About time we make the physicians sign our documents. Thank you for taking the time to share these poignant perspectives.

    • Ed Tobias says:

      Jane – One more thing. I see that you’ve signed into our MS Forums. Would you please post your comments and contract there? I’d love to see a discussion started in the forums on this subject.

      Thanks,

      Ed

    • Gale Vester says:

      Fantastic 5-point list there! I’m copying it in hopes that I won’t need to share it with someone who won’t look past their own nose for a solution. If I do share it, it may or may not be read or understood that it’s meant for them and about them.

      Never had I thought that wishing (on a falling star? maybe! it’s funny how some memories surface from the depths like the Loch Ness monster!) to be unique would go this way.

  4. Jane Harmon, OTR, retired says:

    Thanks, Christopher,

    My immediate response to the idea of laminating AND getting a signature was “Get the signature on a plain paper copy; it’s too easy to wipe the writing off of laminated paper!”

    I can’t say that I’ve ever confronted — and they would feel confronted — any of my personal healthcare “employees” with a contract which both of us would sign. And I do believe that I have, all patients should have, a similar working list of our own responsibilities to uphold in such a relationship, even if it is not recognized by both parties as a contractual agreement. So I look at both sides to evaluate how the relationship is progressing, how it could be improved, and whether I should/could say anything, hoping to make the relationship/partnership stronger. We don’t have to come away as best friends; the goal is to do everything we can to improve the quality of my healthcare. I would like to end the relationship, whether it lasts as long as a visit to the ED or for many years.

    @Ed, I’ll be happy to share this elsewhere; can you recommend the most useful place(s)?

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