Ehlers-Danlos Syndrome and POTS: “I recognize the freedom my wheelchair has given me and how it isn't a sign of weakness or failure."

Hello, Madelyn! Thank you so much for agreeing to share your story with the Carenity audience.

Could you start by telling us a bit about yourself? We’d love to hear about your background, what you do, and any hobbies or interests you enjoy.

Hi! I’m Madelyn, and I’m from Minnesota, where I’ve lived my whole life! Family is very important to me, so I spend a lot of time with my 2 older sisters, my parents, and other family. Most of my hobbies are artistic in nature, some of them being jewelry making, polymer clay sculpting, guitar, piano, drawing, and painting!

You’ve been navigating life with several chronic conditions including POTS, Ehlers-Danlos syndrome, and thoracic outlet syndrome. Could you describe these conditions for our readers and share when you first noticed the symptoms that led you to seek a diagnosis?

Of course! I’ll start with Ehlers-Danlos Syndrome (EDS) as it plays into my other conditions too! EDS is a connective tissue disease with 14 currently recognized subtypes, the hypermobile type, the type I have, being the most common. I like to think of it as the “glue” of my body being defective and not being as strong as it should be. Symptoms have shown throughout my whole life, first starting with chronic joint pain and hypermobility as a young child, then progressing to develop headaches, migraines, joint subluxations, GI issues, and easy bruising. Both POTS and Thoracic Outlet Syndrome are more common in people with EDS than the general population!

In simple terms, POTS (Postural Orthostatic Tachycardia Syndrome) is a form of autonomic dysfunction, an issue that occurs in the autonomic nervous system. My first symptoms included nausea, a racing heart, lightheadedness, and brain fog.

Thoracic Outlet Syndrome (TOS) happens when the thoracic outlet, where all the nerves, arteries, and veins enter the arm from the neck/chest, becomes either too tight or compressed. My first symptoms were terrible arm pain, numbness and tingling down my arm into my pinky and ring finger, and the feeling of losing blood flow to my arm when in different positions.

How have these conditions affected your daily life and routines, particularly with being a wheelchair user? What kind of physical and emotional challenges have you faced, and are there specific triggers or factors that exacerbate your symptoms?

It’s definitely been a difficult journey, learning how to live and adapt to life with the limitations I have. I had used a wheelchair on a few trips before, but in 2019 at age 17, I recognized the freedom my wheelchair gave me and that utilizing a mobility aid isn’t a sign of weakness or failure. I’ve been an ambulatory wheelchair user ever since and have become the most fulfilled I’ve felt in over 10 years!

Recognizing that my conditions were chronic and things that I would probably have to deal with my entire life was an arduous process, especially as I was losing things I loved – school, friends, activities, and abilities.

While my EDS pain can flare when I push myself too hard, my POTS symptoms are affected most by triggers. Some of those include heat, exercise, standing, walking upstairs, eating, and talking.

Can you discuss your current treatment regimen? How effective has it been in managing the symptoms of your conditions?

My current treatments include physical therapy, which helps treat all of my conditions, medications for POTS, and things like bracing for joint pain and increased salt and water to manage POTS symptoms. Without my treatment regimen, I wouldn’t be able to get out of bed without having near-debilitating symptoms and pain.

Since being diagnosed, how has your perspective on life and your priorities changed? What strategies do you use to stay positive and maintain your emotional well-being while living with these conditions?

My perspective on life is very different from before. I grieve the things I lost and the things I didn’t get to experience, but I also find that I have more appreciation for the small things. It can be a struggle to stay positive and, honestly, some days I don’t. Therapy, especially as someone with both physical and mental illnesses, has been the biggest help in changing my mindset and keeping me going!

What inspired you to start your own Instagram page, and what do you post about? Was there a specific moment or realization that prompted this decision?

I was inspired to create my Instagram account as I found the chronic illness community and realized that there are other people out there who understand. At the time I started my account, I had been out of school and without friends for 4 years after I had to leave in 8th grade due to my health. Finding others who understood was game changing and inspired me to try to be that for others as well. My content mostly focuses on chronic illness and disability awareness, but I like to sprinkle in a few different types of posts here and there!

What are some misconceptions or common misunderstandings that you’ve encountered about your conditions, and how do you wish to address them?

One common misconception about POTS is that it’s a fainting syndrome and, while some people do pass out, a lot of people don’t, including myself! I’ve had POTS for nearly 11 years now and haven’t fainted before.

How critical has the support of friends and family been throughout your journey? What advice would you give to others on how to best support loved ones facing similar health challenges?

My family’s support over the past decade has been crucial in pushing through and getting through my toughest days. I’ve felt so blessed to have such a great support system, something many people don’t get to have.

I think the best way to support someone going through health challenges is to just be there for them and to listen. I know it can feel helpless seeing someone you care for struggling, but sometimes just being there and showing them that they’re not alone can be the best thing you can do!

What are your hopes and aspirations for the future, both personally and for the wider community affected by these conditions?

I’m currently preparing to start some college classes with the hopes of going into the medical field in some way, possibly medical research!

As for the future of the chronic illness community, my dream is that more people will believe and listen to children if they say something is wrong. Children are so often not taken seriously when they bring up a health concern not visible to the naked eye, but children deserve to be believed and listened to.

Do you have any final words of advice or encouragement you’d like to share with others who are dealing with similar challenges?

One last thing I’d like to say is that sometimes the best thing you can do for your health is to do nothing. If you are getting overwhelmed with life, give yourself a day or two to grieve, recharge, or do your comfort activities. It’s not selfish to care for yourself!

A big thank you to Madelyn for this interview! Don’t forget to check out her Instagram page: @chronicallymadelyn and Etsy store: MadelynMadeArt.

Did you find this story helpful?

Click Like and share your thoughts and questions with the community in the comments below!

Take care of yourself!