But What is Ehlers-Danlos Syndrome?

According to the Mayo Clinic Ehlers-Danlos Syndrome “is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provides strength and elasticity to the underlying structures in your body.” (http://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/basics/definition/con-20033656) Those who have Ehlers-Danlos Syndrome suffer from skin that is considered “stretchy” and “fragile.” They also have joints that over extend resulting in dislocations, subluxations, and pain. There are other major issues depending on which type of Ehlers-Danlos Syndrome is being talked about.

Even when looking at the scientific explanations the question still remains, what is Ehlers-Danlos Syndrome?

The scientific definition is great to have and know, but sometimes it just doesn’t answer the question about what it actually is. That happens for various reasons including the fact that it isn’t a personal answer but rather a generic textbook one. In order to get a real sense of what it is, sometimes you need to hear the details that are often not talked about. So to answer the question “But what is Ehlers-Danlos Syndrome” I will use personal information and things not normally talked about.

EDS is a something that changes your life in every single aspect. Nothing is ever the same after you get diagnosed; from friends, to physical activities, to daily life. For starters, you have to readjust your physical activities. In some cases you have to give up sports and things that you have been doing your entire life because your joints can’t handle the added pressure. In addition to not being able to handle the added pressure, sometimes the risk of serious injury and long term effects is just too great. This is just one of the many areas that your life can be affected when having EDS. There are many people who struggle with EDS and its various symptoms that their everyday life is diminished. They struggle to be able to get up and complete your typical daily tasks, like showering, getting dressed, eating, going to school or work. Growing up as a child with this and struggling to attend school regularly like you are supposed to proves to be quite a challenge. From experience, I can say that growing up like this, at the time being undiagnosed, I often felt like an outsider. I felt that I didn’t belong. While my life revolved around being sick, not feeling well, being tired, or always being hurt, everyone else’s lives went on without hesitation. It became a joke to everyone else that I was always hurt or sick and missing school. I remember always hearing “oh she’s sick again” or “you were fine yesterday why are you not able to walk today?” I never had answers or explanations so instead of explaining I accepted the judgement and being the butt of the jokes.  I went from always having my friends around, always doing something or going somewhere to always saying “I can’t” or “I don’t feel well.” This led to a lot of changes in my life because it excluded my from friends. Even as I grew older I have constantly had to find excuses to get out of doing things or going places. No one has ever bothered to learn about EDS so none of them accept the answer of “my body just can’t do that like yours.”  The changes to your life don’t end there; they carry over into the medical aspect as well. Often times, there is a lack of education or understanding which leads to a lot of judgement and sometimes mistreatment in the medical field. Since you are facing so much acute and chronic pain, you can often be looked at as a “drug seeker” versus someone who desperately needs some form of pain management. Lastly, there are a lot of doctors who are simply uneducated, uninformed, or simply don’t understand so they pass judgement. These medical professionals consider you a “faker” or “hypochondriac” rather than acknowledge that there is something really going on medically. They also resort to telling you misguided information about how you can magically be better if you just ate right, slept more, etc. This can lead to you being labeled as “doctor shopping” simply because you are looking for one who understands, doesn’t judge, one who is simply willing to think outside the box rather than treat you like less than a human.

These two images are ones that stand out and really reflect on what I mentioned before and will continue to reference throughout my various blogs.