Beyond Ehlers-Danlos Syndrome: Life with Multiple Co-occurring Disorders

When did you first start experiencing symptoms?

When I was about 7 years old.

How did you go about seeking a diagnosis?

My mom started taking me to physicians to address chronic joint pain and eventually dislocations which led to a growing team of physicians in different specialties.

How long did it take for you to receive a diagnosis?

It took 17 years to get a diagnosis of Ehlers-Danlos Syndrome. From there, more and more diagnoses have and continue to roll in as my symptoms worsen and are properly assessed and addressed.

How did you feel when you received your diagnosis?

For many people, receiving a diagnosis of a chronic and incurable disorder can be devastating. For me, receiving a diagnosis was freeing and validating because I knew for so many years that my body was not “typical”.

How did you communicate your diagnosis with your loved ones?

My mom was with me when I received my diagnosis and was similarly relieved to have an answer. I already knew quite a bit of information about Ehlers-Danlos Syndromes and communicated that information, as I usually do, in a rather matter of fact way , so my family wasn’t really surprised when I finally received an official diagnosis.

What treatments have you undergone and how have they impacted you?

I’ve undergone surgical repairs to severely damaged joint tissues and years of physical, occupational and movement therapies to help strengthen muscles. I’ve had surgeries to modify and remove severely damaged parts of my gastrointestinal system. I’m on a variety of medications for pain, migraines, severe gastrointestinal dysmotility, nausea and vomiting and immune modulators for autoimmune diseases; iron infusions, prophylactic antibiotics for chronic infections and most importantly, I receive Total Parenteral Nutrition and fluids through a Hickman central line catheter 20 hours per day as I am no longer able to eat by mouth.

What is the most difficult part of your treatment, and how do you manage it?

TPN is the most difficult part of my treatment, aside from surgeries, because having a central line comes with legitimate infection risks and a lot of maintenance. TPN is also the primary treatment keeping me alive right now and for the last year and a half which makes it easier to manage because I have perspective.

What has been the most challenging aspect of living with your condition?

Living as a chronically ill and disabled person in a world that was not made to be accessible to us is challenging and frustrating at times. For me, it’s not so much my diagnoses that make life challenging; it’s the lack of access to proper resources and the ableism I am subjected to that is most challenging.

"Never let anyone have the power to make you feel broken or unworthy of care."

How has your daily life and routine been affected by your condition?

I’ve had to revise my life plans multiple times over the last 13 years as my body has changed with disease progression. I have routines, but on any given day I must make adjustments because my body is quite unpredictable.

How has your condition affected your mental health and emotional well-being?

Enduring years of medical gaslighting and trauma takes a toll on mental health. It’s not something a lot of people like to talk about because acknowledging mental health challenges often brings back those feelings of “it’s all in your head”- words that most of us have heard over and over. I am in place now where I am able to see the toll that is taken on my mental health between living in a chronic state of “fight or flight” due to nervous system dysfunction and also spending hours a week managing my health. I work hard to make sure I care for my mental health as much as my physical health and try to remember to hold space for all of my emotions.

What strategies have you found helpful for managing your emotions and thoughts?

I have found that finding a community of support has been the best way to manage my emotions and thoughts. Sometimes this is simply a meltdown moment with my partner or mom; sometimes it’s communicating with other chronically ill and disabled people who understand my lived experiences on a very personal level.

How has your diagnosis impacted your relationships with your friends and family?

As my health has become more complex and, at times, scary, I have had to have difficult conversations with friends and family. My family is strong and everyone works so hard to support me through this journey. I have seen some of my relationships with friends become more distant. I used to feel bad about not being able to do certain things or commit to certain events or get togethers, but I have learned that my first priority is to make sure that my body is cared for, and I don’t have to feel guilty about that.

What support systems have been helpful during your health journey?

I am lucky to have a strong support system of family, including my amazing partner, as well as friends near and far. Community is everything to me and there is so much support in connecting with others who are disabled or chronically ill, even if they don’t have the same diagnoses. In community I have found support for myself, but have also been given the opportunity to reciprocate that support with others which is profoundly important.

What advice would you give to someone who has recently been diagnosed with your condition?

The best advice I can give is to trust that you know your body better than anyone else, but be prepared to learn as much as you possibly can because self-advocacy will be a necessity to get the care you need when you live with complex and/or rare condition(s).

What advice would you give to your past self if you had the opportunity to go back in time?

I would tell myself to never let anyone have the power to make you feel broken or unworthy of care. I would have saved myself a lot of pain and trauma had I internalized that earlier in life.

How can others be more supportive and understanding of people with your condition?

Others can recognize that not all disabilities are visible, and many disabilities are dynamic which means they aren’t the same every day. Don’t invalidate people’s experiences by questioning their use of a mobility aid one day and not another. Don’t question someone else’s lived experiences.

‍Looking for support and resources as a fellow EDS warrior? Click here. 

Donate to The Ehlers-Danlos Society and care for people and families living with EDS worldwide, here. 

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Disclaimer: Please be aware that the content of this patient story, is solely the viewpoint of the individual(s) involved and should not be considered as medical advice.