Recognizing Ehlers-Danlos: “The Diagnosis Made Everything Fall Into Place”

My very first major symptom showed up when I was 19. I dislocated my left shoulder without any form of trauma or accident. Till then, I had no joint aches or pains and I was a normal, cheerful girl who loved to dance. In my early teenage years, I was diagnosed with IBS (Irritable Bowel Syndrome) and experienced acute migraines.

With my first dislocation, I experienced a level of pain I didn’t think existed at that time. It affected every aspect of my life, including University, relationships and even my personal emotional and mental state. As time passed, I could no longer pursue my interests and passions with the same rigor, and life began to change drastically.

I decided to go for an open shoulder operation (Inferior Capsular Shift) with hope that this would fix it. I was convinced that it’ll make things okay, but it really did not. The pain stayed. While most people recover from this surgery rather easily, I took months (in fact about a year plus) to feel just a bit better. No one seemed to understand what was wrong with me.

I consulted orthopedic surgeons, chiropractors, acupuncturists, homeopaths, a rheumatologist, osteopaths and physiotherapists from Singapore and India and found no answers. I was only misdiagnosed! It felt like all my effort were in vain. By age 22, many more of my joints were affected, again, without any kind of injury or physical trauma. I even took Corticosteroids in my tailbone and went in for Radiofrequency Ablation (RFA) for seven facet joints. Even then, nothing changed.

A Pain Specialist finally diagnosed me with Hypermobility Syndrome (HMS). HMS is also categorized as EDS Hypermobiility Type or EDS Type (III) but some prefer to differentiate these two conditions. Though EDS Hypermobility Type is considered to be the least severe of the various types of EDS, it is commonly associated with severe chronic pain. This diagnosis made everything fall into place; like different pieces of jigsaw puzzles finally coming together. I was extremely relieved and happy to have finally found a closure, but the future seemed ridiculously uncertain. There was no cure and there still is none.

After years of a physically, emotionally and mentally draining roller coaster ride, I can say that I am starting to feel better about this. I am now managing eight unstable and degenerative joints, but I feel so much more comfortable with how my body works. I think the most important step for me was acceptance – acceptance of my body for what it is. I don’t think acceptance means defeat, in fact, it’s far from that! Every single day when I wake up, I make a choice to spend the day to the best of my ability. Not disability. Even though I am still in pain and my symptoms persist, I’m learning what’s really important. Sometimes, there’s just no “quick-fix” in life and I didn’t want to accept it. I now realize the importance of healing and taking things slower. Along with taking daily medications, I do physiotherapy, pilates and basic hydrotherapy, go on walks when I can, follow an Ayurvedic routine (this is new for me so we’ll see how it goes), journal a lot, and continue to work on my emotional and mental strength. That’s how I try to deal with it.

I urge others to keep persevering, and to patiently seek ways that will make the pain just a bit more bearable. Be okay with asking for help, because needing help doesn’t make us weak. Do YOUR personal best and know that your best doesn’t have to be the same as the rest. I’ve come to a conclusion that living with EDS is predictably unpredictable. Pain has become a big part of our lives, but how we respond to it is our completely our choice. It is important to be okay with where we are right now. So, keep speaking to the ones who care, look for supportive and patient health care professionals, keep journaling and letting it all out…and MOST importantly, love yourself with all that you’ve got. Because you deserve it.

March is the Month to Share YOUR Story!

Do you or your child have a rare disease? We want to hear your story. This month we celebrate all patients and their families who speak out on behalf of their condition to raise awareness, connect with others and inspire the community. Make sure to share your story with us by writing to us here.