Counseling for Ehlers-Danlos Syndrome

Jennifer Sutton, Chronic Hope Counseling’s founder, was diagnosed with Ehlers-Danlos Syndrome (EDS) in 2020 so this diagnosis holds a special place in Chronic Hope Counseling’s heart. EDS is a debilitating and often disabling diagnosis that can change every part of a person’s life. The journey to just find a diagnosis can often take decades, and that path is difficult and often traumatizing. It can be full of invalidation, painful procedures, confusion, anxiety, depression, and chaos.

What is Counseling for Ehlers-Danlos Syndrome?

Living with Ehlers-Danlos Syndrome (EDS) is truly a unique experience. Everyone with EDS has some similarities, but we’re all very unique in how it feels to live in our bodies as well. Having pain that is chronic and never seems to give you a break is an exhausting experience that can wear you down both physically and mentally.

EDS counseling focuses on all of the struggles that your chronic condition(s) presents you, along with any anxiety, depression or any other mental health battles that you are dealing with while being mindful of any nervous system dysregulations that may need to be addressed. Having EDS is hard to ignore, it tends to seep into everything, so it needs to be considered when considering your mental health.

Poor Physical Health Impacts Mental Health

Experiencing poor physical health can be detrimental to your mental health.  There are several things we can do to take that power back and improve your mental and physical health since they are so tied together. 

At Chronic Hope Counseling all of our counselors have personal experience with chronic pain/illness, and are heavily trained in chronic pain/illness counseling, working with this community is our passion and it’s all that we do. We would love to work with you and help you learn to live beyond your pain.

Jennifer Sutton, founder of Chronic Hope Counseling, working in her Garden. As some one who has Ehlers-Danlos Syndrome Jennifer understands the importance of Counseling for Ehlers-Danlos Syndrome.
The Ehlers-Danlos Zebra. EHlers-Danlos can have a profound impact on your mental health. Counseling for Ehlers-Danlos Syndrome can help navigate those emotions.

Life With Ehlers-Danlos Syndrome

It’s estimated that 1 in 5,000 people have EDS, it could be argued that it’s very underdiagnosed, but either way, EDS is rare and that makes things complicated. Everyone with EDS has been to doctor appointments where the doc doesn’t know what EDS is and googles it mid-appointment. Or even worse, they run into a doctor that thinks EDS is just “being flexible”, isn’t a big deal, and gives harmful advice (Jennifer was once told by an “EDS knowledgeable doctor” to fix her shoulder pain by doing pull-ups and powerlifting….like what?).

Exhausting and Invalidating

It can be exhausting to have to explain to everyone what your diagnosis is and invalidating to have to constantly explain why it’s having such an impact on your life.

Living with a rare disorder can wear on your mental health, it can exacerbate existing mental health diagnoses and lead to new struggles such as anxiety and depression.

Learn to Cope With Counseling for Ehlers-Danlos Syndrome

The counselors at Chronic Hope Counseling understand the medical trauma, stress, and chaos that comes along with a rare diagnosis like EDS. We can help you process these feelings and learn how to cope with the stress of being an EDS zebra.

Monarch butterfly resting with its wings open on a yellow flower representing the peace that can be found through Counseling for Ehlers-Danlos Syndrome in Raleigh, NC.
 

More About Ehlers Danlos Syndrome

 
 

EDS and chronic fatigue go hand-in-hand. A lot of people with EDS do sleep studies and they come out “normal”, but this lecture explains how subtle and often overlooked abnormalities are often hidden in the test results This is a fantastic lecture that explains the connection between sleep and EDS, we highly recommend it if you find yourself struggling to stay awake,

EDS can be incredibly confusing. Doctors often disagree about it, there’s really no such thing as an “EDS specialist”, which often leaves us scrambling and trying to figure out things on our own. Izzy Kornblau is an EDS-focused YouTuber who has countless useful videos about EDS and how to navigate life with chronic illness.

Begin Counseling for Ehlers-Danlos Syndrome in Raleigh, NC

EDS can suck the joy and care out of life. Oftentimes people who experience chronic illness feel like a burden and misunderstood, but you are not alone! At Chronic Hope Counseling our skilled team of therapists has first-hand knowledge and personal understanding of EDS and all the trials that accompany it. We want to support and guide you on your journey to understanding and living with EDS in a nonjudgmental and caring environment. Follow the steps below to get started on the road to living your best life.

Other Counseling Services Offered at Chronic Hope Counseling in North Carolina

In addition to Chronic Illness Counseling, we also offer a variety of other services that are geared toward people who exist within the world of chronic illness and pain. These include Chronic Pain Counseling, Chronic Fatigue Counseling, Long Covid Counseling, Chronic Illness Counseling, Family and Relationship Counseling as well as Caregiver Counseling and Support. If you are hurting, we see you and care. Reach out to us today!

Resource Links for Ehlers-Danlos Syndrome