MdDS: a Rare, Invisible Syndrome

Having a rare, invisible syndrome can be lonely but Elaine offers some words of wisdom for friends and family.


How to Be a Friend to a Friend Who’s Sick is written by Letty Cottin Pogrebin. Pogrebin is an acclaimed journalist, public speaker, political activist, and author of several nonfiction bestsellers. During her extended period of treatment for breast cancer, Pogrebin met many cancer patients in the waiting room. She became interested in the difference between how people treat sick friends and how sick people want to be treated.

The subject matter is relevant to all of us who have Mal de Debarquement Syndrome. However, in reading Pogrebin’s book, I thought about the significant differences between people’s responses to illnesses and symptoms that they are familiar with and their responses to illnesses which they know nothing about and that have odd symptoms.

We have a disorder that is unpronounceable, rare and invisible, and it sounds crazy. Although many of us have friends who have had cancer, heart attacks, or serious accidents, a friend with MdDS is a new experience for many. It is a difficult disorder for us to explain and for friends to understand. They cannot imagine that our brains feel constant motion and understand how exhausting this can be. Rocking can affect us cognitively. It can force us to hold onto walls or to other people in order to stay balanced. It sometimes makes us stagger and look drunk. It can cause model employees to lose their jobs and become unable to take care of their families. It can relegate people with an active social life to the confines of their home.

While a few of our friends “get it,” most of the time, their attitudes range from disbelieving to secretly thinking we need to “just deal with it,” or to suggesting that we see a psychiatrist for depression. The longer we have symptoms, the less sympathetic these friends are likely to become.

This reaction is not difficult for most of us to comprehend. If a friend has an illness and recovers, there is happiness and there is closure. If a friend succumbs to an illness, there is grief and, eventually, there is closure. But if a friend has an illness that is chronic, there is no closure. In an era of the 24-hour television news cycle, this is the way it is: More emergent (and seemingly urgent) issues with family and friends become the late-breaking lead story and take priority, quickly relegating the MdDS friend’s problems to a paragraph buried at the end of the last commercial.

For those few friends who are in it for the long run, thank you for understanding and accepting that the change in our health may be lengthy and may be permanent. And, since we can be frank with you, here are some ways you can help us:

Take time to read the information on www.mddsfoundation.org. It’s well written and provides information on the cause and the course of our disorder. If you become more interested, check the site’s bibliography for recent articles written for the general public. There is also a feature on the site called “Faces of MdDS” that is written by people with MdDS and whose stories are all too familiar to us.

Be genuine in your offer to help. When you say, “Call me if there is anything I can do,” you are placing the burden on your friend. Most of us are reluctant to seek help and won’t make that call. We would rather struggle than ask for a favor.

Be helpful when you do an errand for your friend. Many of us cannot deal with the noise, the crowds, and the lighting in “big box stores.” If you are going to one, please offer to shop for your friend. Stocking up on non-perishable needed items can save us from having to shop for them so often. And please do not insist on paying for them!

Be thoughtful when you bring food to a friend. Make sure it is something that the family enjoys. Cookies or cakes do not take the place of a lunch or dinner that the person does not have to cook. Please bring it in a disposable container that does not have to be washed and can be tossed afterwards. This is not the time to “go green.”

Understand how difficult it is for us to keep social plans. When we set a date for dinner or a movie, we probably are having a good day, and those plans sound as if they are fun and possible. When the time comes, however, we may be too sick to leave the house. It’s best not to buy expensive theater or concert tickets when our illness is so unpredictable.

Remember that we are the same person that we were before this life-altering illness entered and controlled our lives. The kindest email that I have received reads, “Elaine, I know that these past months and years have been so tough for you. Just know that you have friends (like me!) that love you and always see the beautiful ‘Elaine inside’ who is always there, no matter what issue befalls you.”

MdDS: a Rare, Invisible Syndrome was last modified: July 15th, 2017 by MdDS Foundation

5 comments

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  1. Arlene Kauffman

    I’ve had Medes [sic] since November 2006. I got it after a 7 day cruise and never came out of 15 ft waves. Went to 5 ent Drs in s fl and no one diagnosed me correctly I wanted to end my life. I found out about dr TUSA at Emory in Atlanta. He diagnosed me and put me on clonapin. I was told it only works for 13% of people. Thank G-d it helped me and I take one pill daily I still am very off balance and usually hold on to someone or something when walking. I am fine when driving a car. It is tolerable but not great

  2. Jamie

    Hi, after years of searching it seems that I have stumbled upon my seemingly lifelong illness!

    I had my first event when I was about 11 years old and suffered severe migraine before that (not sure if there is any correlation).

    The motion feeling maintained to varying degrees but seemed a lot worse when I was in confined and restrained environments such as attending church at school.

    Many years later I suffered severe malaria that turned cerebral and the doctor caring for me overdosed me with intravenous quinine sulphate. I was incredibly ill with motion sickness and it felt like I was permanently at sea…and I felt incredibly disorientated.

    I was told I had residual synconism from the quinine and that it was permanent damage. It took me years to be able to re adjust to my new unbalanced life and contemplated all sorts if drastic things.

    I now realise that I have had MdDS since I was 11 and that the malaria seems to have made it worse, including tinnitus.

    It’s been great reading the blogs and they all sound so familiar. Hope everyone gets strength and hopefully there will be a breakthrough drug to help us all very soon. All the best Jamie

  3. anita

    So sad especially when it is real to you and others dont understand

  4. polly

    This was so helpful to me. I make excuses so as not to have to mention the unpronounceable condition most of my friends don’t even know I have. I am now going to try a different tack and ask for the help I need, not the help they think I need. I know their intentions are always good and the best way I can honour that (Brit; hence the ‘u’ : ) is by being open and honest so that when I thank them for their support, the thanks is entirely genuine. Such a great blog. I am so grateful.

  5. granny hodgen

    Thank you, Dear Heart, for this post. Communication is paramount in our fight against this malady and in dealing with those who deny it really exists. We need to hear about what’s going on ”out there” so we don’t feel so isolated. My own doctor, after hearing and reading about MdDS, still takes a pragmatic view of denial. He recently told me that if he asked 100 people if they suffer any or all of our symptoms 98 of them would say YES! He doesn’t realize the severity of our experiences. Until more is known and more people appear with the depth of symptoms, I’m afraid we’ll continue to get this reaction. I’ve gotten a small supply of the brochure and I wear the tee shirt often to spread the word. Please continue your herculean efforts – we appreciate all you do.

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