Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I’m going to be talking about my experience with Elhers Danlos Syndrome Hypermobile type as part of the “My Diagnosis” series. Now that I’ve covered all my mental health topics, I feel like the physical topic that I should start with is hEDS. That’s because this is the big one for me. It really can be argued that all my other physical problems come back to this one problem.
Connective tissue is the foundational building block for the body. It is a part of everything. It holds everything together and makes sure that everything is supported. When the connective tissue is not built properly, it is pretty easy to follow the logic that other things in the body would not properly function. The parts of the body that are made of more connective tissue would be more at risk. So, the bones which are all connective tissue, would be at high risk for having problems. When the bones are not built right, they are at risk on not properly making the blood cells. And it goes on in this fashion. This is why people with a diagnosis of any kind of connective tissue disorder generally have other diagnoses as well.
Because of this, it is rather difficult to say what things going on in my body are not part of the EDS. How do I draw a line between my EDS and anything else when it is the probable cause of everything else? This is the reason that I have a really hard time talking to people about my experiences with EDS. I’m not really sure what parts of my life I should be including…
All my life, I’ve had hypermobile joints. I’ve always been more flexible than other people. As a kid, I could easily put my feet behind my head or do the splits. My joints have never stayed where they were supposed to be. When in school, I frequently suffered sprains and muscle strains doing every day tasks or tasks that doctors didn’t think should have caused the injury. I’ve had joints sublux and dislocate without having an injury. I have subluxed my shoulder simply by rolling over in bed. I’ve dislocated my fingers while washing the table.
The days that I have been pain free can be counted upon one hand. That’s 41 years of life and I have spent all those years with a constant, chronic pain. My joints ache from being pushed and rubbed in ways they weren’t designed for. The nerves tingle and prickle from all the times they have been impinged due to improperly aligned joints or inflammation from injuries. Pain is a constant companion in my life and on the few days that I am without it, I feel alien and weird because it is such a foreign state for me.
I have the semi-transparent skin that let’s you see all my veins and tendons through it. It’s like someone has drawn a road map on me in blue marker. My skin is stretchy. It can easily be pinched and pulled from my body. It’s like I have just a little bit too much skin for my size of body. Like wearing a large pair of gloves when you fit in a medium. There is just this extra skin every where. Despite this extra stretch, it is also oddly fragile. At unexpected times, it will tear or shear. Pressure injuries are a major problem even if the pressure is light or for a short duration. Bruises form seemingly randomly. The pressure from a shower can cause me to bruise, but getting a deep tissue massage won’t. There are stretch marks just from growing.
Fatigue. I battle this endlessly. There are random days that I simply have no energy and need to sleep for 10 or 12 hours, yet still wake up feeling as if I haven’t slept. Things that shouldn’t take any effort are oddly exhausting. Like taking a shower or climbing a flight of stairs. And they always have been. Even when I was fit and working out 40 hours a week. This is one of the most difficult symptoms to manage because there is no predicting it. There is no reducing it. There is no working through it. The fatigue hits and I have to rest. Just wait it out. Every time it comes there is the fear that it won’t leave again, that this time I will be trapped in that state forever.
Like so many with hEDS, I have the common comorbidities. There are the gut disorders with malabsorption. There is the dysautonomia, in my case it’s POTS. I’ve struggled with osteopenia. Have osteoarthritis. Migraines and tension headaches are also part of the fun. Gynecologic issues too. Oh yeah, hEDS is the gift that keeps on giving. Because it also offers pelvic dysfunction. Sleep Disturbance. Mast Cell Activation Disorder. Yup, it’s a full package that no one wants.
The thing that it buys you the most of is the doubt and disbelief of those around you, including your doctors. In 2006, I suffered a major dislocation of my shoulder and it was then that a doctor finally acknowledged that there was something not normal about my body. After having spent 25 years of my life living in that weird, misbehaving body and spending about 20 years telling people it wasn’t working right… Someone was finally telling me that my body wasn’t normal. Despite having finally gotten a diagnosis, I was still in the position that most people had no idea what EDS was and thus still didn’t believe that it was really a thing.
Most of my experience with hEDS has been being told that I am a hypochondriac and that I am spleeny. Many have just out right dismissed me as being a liar that was looking for attention by making up these weird body problems. Being told that you don’t know your own truth is a really confusing and difficult thing for a kid to understand. Eventually, I stopped telling people about my pain and I stopped telling people about the vomiting and the joints that didn’t stay where they were supposed to be. There were so many people telling me that my truth was a lie, that I began to question everything that was real. For a time, I lost hold. I began to believe that it was all in my head.
Life has a funny way of giving us the thing that we need when we need it the most. The trick is realizing in the moment that it is something that we need. Most of the time, it will be a matter of looking back and realizing how amazing that moment was. For me, that moment was when a doctor managed to pull it all out of me and believed everything that I told her. And just like that, I had taken ahold again.
I am a zebra. I bare those stripes on my skin. They are the stretch marks that doctors say I shouldn’t have. I carry those stripes on my soul. Those are the lines that now mark where I can no longer trust. These zebra lines mark out the places where I have been broken and where I have bled. The places that I have be hurt and the places that I have healed. Like broken china repaired with gold, I am a delicate, resilient zebra. These are my stripes.
Well, that’s about it for my rambling today. Thanks for coming and spending some time with me. If you like what you read, click on that like button. It really does help! Until we talk again, you take care of yourselves!