Hypermobility Syndrome, AKA Joint Hypermobility Syndrome (JHS), Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT), Hypermobility Spectrum Disorders (HSD)

June 30, 2015

How long is your X-file of diagnoses?

See the full presentation here

"Crushing"  "Depressing"  "Devastating"  "Dispiriting"  "Demoralizing" 

People who have been diagnosed with hypermobility syndrome will use these words to describe the pre-diagnosis period. I have seen the incomprehension and incredulity in the eyes of friends, heard it in their voices - it is not that debilitating, it is not life threatening, how has it been so difficult for you as you say it has been?

The mysterious illnesses

How long is my list of diagnosis? It is 27 at present, diseases/ diagnoses from the head to the toes.

I started with chronic pain at the age of 6-7 years, and it never went away. The pain went on worsening, more and more health conditions cropped up with no explanation why it was all happening to me.  People twist their ankles and the pain goes away after a week. Weeks and months and years just slipped by - the pain and the plethora of problems never abated.

Mysterious pains that would crop up here and there for hurts I could not recall, were exasperating. It was mystery for me as to why I had so many diseases while I lived a healthy lifestyle, paid attention to my posture and nutrition, and spent time on exercises. Yet, my body was like a walking encyclopedia of diseases. After a point, you know deep down there is something wrong with you, something no one else can see but that does not mean it is not there. Something does not feel right, and this is a feeling which can be understood only by those who have known it.

The loneliness

What did the people and doctors say to me?
There is no problem. You are fine.
You have so many problems, perhaps you can leave one part of your body out of it (meant as a joke) 
Exercise for your spinal problems (wrong set of exercises too, as I later found out!)
Are you sure the doctors told you these spinal problems, was there anyone with you who can substantiate what the doctors told you?
There is no inflammation, you are fine.
Do more Exercises.
You have very less stamina, you get tired so easily.
You really like going to doctors, don't you? 
They made me feel embarrassed of being sick. They made me embarrassed of not getting well after consulting specialists. I felt sick of my existence.

This is an invisible disability. Activities that are painful or difficult for my body to carry out or coordinate made me appear slow, inept and clumsy. Probably lazy. I could not break into a sprint even if I had to flee for my life. I look hale and hearty and yet found it unimaginably painful to ride in a bus if I did not get a seat. Even the slightest braking and swaying of the bus made my weak body swerve wildly, and as I held on to the handrail straps or stanchions for my dear life, my wrists would be killing me. I could not cook, something I love to do without facing excruciating pain in my wrist. I could not write a few sentences without getting serious pain in the fingers. I spent more than a decade looking at people how they write so effortlessly, convinced that I was using an incorrect method of holding the pen. And even if I was ready to face the pain, I still simply could not lift the cooking pan with its handle if it was above 1 kilo in weight. Spinal diseases limited my mobility, and the ability to travel, do a job, do activities of self-care - clothing myself for example, etc. The list goes on...

The tiredness, the unrelenting health issues and having no excuse for it all creates a huge prison of isolation. As years go by, exhaustion, hopelessness, a short temper and resentment became permanent residents in my heart which earlier used to be full of optimism, hope, compassion, altruism, and patience. Therefore, the period without a diagnosis was more difficult and the diagnosis was a huge moment of revelation-  to know that I do have a disease that accounts for all the 27 diseases.

Here is a list of diseases that are seen as manifestations of or in frequent association with JHS/HEDS. The various kind of osteoarticular (joint related) and muscular problems can each affect any of the hundreds of joints and muscles in the body.