My Roller Coaster, by Bailey

There’s the constant rocking, bobbing, and swaying feelings. And a myriad of other symptoms, too. Bailey’s MdDS experience has also been fraught with unpredictable ups and downs, a roller coaster of challenges. At first depressed and looking for answers, now she says, 

“I hope to raise awareness and potentially help someone else on the same roller coaster.”

smiling woman standing on a path leading to a large geodesic dome
I enjoy accessible, outdoor environments where I’ve grown most comfortable! I find the fresh air to be healing in a way.

Q: How did you feel when you found a community of others like you?

A: I was referred to look into the MdDS support group when I was initially diagnosed by an ENT. He was the first person to validate me and bring up the name “MdDS.” When I joined the group, I immediately felt less alone. I was able to post a couple things reaching out to others, and everyone was so kind and more than helpful. Again, the validation from the ENT and this group has really changed everything.

Q: What has been the hardest part of having MdDS?

A: Before I was diagnosed, I saw four doctors, an ER team, and an urgent care. Everyone told me it was anxiety or the flu. I was the most depressed I had been in years and felt like I was going insane. I lost 25 lbs. in one month because I couldn’t eat, couldn’t work, couldn’t hardly hold myself up. I felt hopeless and sick constantly. I couldn’t sleep without waking up every hour and even still find it hard to get comfortable, as I sleep elevated. Above all, my inability to go in public spaces such as the grocery store, or department shops, or even just date nights with my wife… it has truly taken over my life in every way.

Q: How have things gotten better?

A: I have been through Physical Therapy which helped reduce a few of my symptoms, and I can now sleep on my sides (still elevated). I started Advanced Vestibular Therapy, which I am really entrusting to put me in remission. They expect an 80-90% success rate, and I am praying that I add to it. I now challenge myself each day, even on my worst days, to go outside for even just a small walk, or to go into a store even just for a few minutes.

Q: What personal message do you want to share?

A: Please advocate for yourself. If you know something is wrong, no matter how healthy you appear on paper or how young you are, nothing is more important than pushing a care team to truly take care of you. I am now at 100 days of being on “the boat,” and if I’d not advocated for myself and continued to fight everyday to get a diagnosis and thorough testing,* I don’t think I would still be here. It is lonely, and anxiety-inducing trying to get answers but, I promise, it is so worth it when you do. Now I have the opportunity to get better everyday with my team of doctors and audiologists, and I feel very hopeful.

Bailey
Motion-triggered
Age at onset: Under 30

Looking for support? MdDS Friends is the largest network of MdDS patients you’ll find. Learn more about the online group and how to join at mddsfoundation.org/support.

*While internationally recognized Diagnostic Criteria for MdDS were recently published, there are no tests that can provide a definitive diagnosis of MdDS. Learn more about Getting Diagnosed on our website.

3 comments

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  1. Shellie Antey-Thompson

    Keep the faith Bailey! Proud of you for persevering.

  2. Jessie Lisanti

    thank you for sharing, as another person who got diagnosed when under 30, it truly helps to know there are other young people out there dealing with this. your story made me feel seen and understood <3

  3. Josn Walko

    Thank you for sharing your story. I still remember the day I stumbled on the website while googling. It has made coping with this so much easier. There is strength and hope in numbers.

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