Please note, this is my personal experience of living with Ehlers Danlos Syndrome, the treatments and path to diagnosis and should therefore not be taken as medical advice. I am aware that some complaints are only indirect EDS symptoms but these also contribute to the overall picture and my experience with the condition, EDS.
My body strength declined slowly in my late 20th. My work was heavy and it was difficult to divide my energy between work, home duties, hobbies and social activities. I couldn’t pinpoint my difficulties, I blamed my physically tough job, and at first I thought feeling bodily exhausted was normal. I didn’t allow myself to admit that I was in pain, only tired. Yet, when I saw how easily others moved and walked, I was just amazed and couldn’t understand how things were so easy for them. At first I searched for a solution for the heavy, exhausted feeling of my legs. I bought compression stockings and they were a big relief instantly. It felt like my whole body wanted to be tightened, encased by a second skin that held my body firm. My legs were most affected so compression stockings became a daily necessity.
Although I didn’t feel like being ill, or having a disability, I was worried and I did mention my hardship to my GP and later to my rheumatologist when I was treated for rheumatic fever in both my ankles. He then diagnosed Fibromyalgia, which was only communicated to me years later. I was not persistent in getting a diagnosis for my exhausted body because at that time I had more issues. We were battling infertility, I had erectile disorder and on top of that came incontinence issues. Wrapping all issues together to make sense of what I felt and experienced was impossible and instead I focused on dealing with, and searching for help and treatment for my bladder issues and at the same time trying to divide my energy as much as possible. Fibromyalgia does have an impact on the whole body and there is no cure for it. At that moment it didn’t make sense to me to put a lot of effort into searching for a cure for my stiffness, fatigue, and heavy limbs. Maintaining a normal life, building a future, a family was my goal. In my mind, enduring discomfort, stiffness, fatigue was part of being an adult.
Stiffness, occasional pain and fatigue did not feel like a threat for my future, our future as a family, but infertility and erectile disorder did. Battling all my issues seemed impossible and often too much. It’s a lonely feeling, when you can not understand what you feel, and not being able to explain it to others. Let alone expect others to understand what I felt. We managed to become parents, though not in the natural way. Having a goal, a purpose to endure the pain gave me new energy to hold on for more years. Day by day I had to choose how to use my energy, how to endure the pain but at least I had a purpose and holding our child was a win, worth every adversity. I lived the life I wanted but it came with a price.
In the long term the price was a mental challenge. It was hard to admit, and acknowledge that I was not only dealing with physical issues. Not understanding what was wrong with my body was stressful. I didn’t want to give in to my issues and let it run my life. Despite desperately holding on to maintain my life as I knew it, as I wanted it, slowly abilities slipped away from me. My fingers became too stiff, too painful and there was no choice but to give up my hobbies. Slowly I slipped down the slide of depression.
Living with Ehlers Danlos Syndrome 