When the media features Ehlers-Danlos syndrome (EDS), the focus is usually on those of us who dislocate multiple times a day, the chronic pain, those who can contort their bodies into extreme positions, and sometimes extremely stretchy skin. EDS, a genetic connective tissue disorder, is very under-recognized, even by the medical community, as most doctors, when they have heard of EDS, are only familiar with the well-emphasized symptoms. The lack of emphasis on the other signs means that those of us who present more subtly may struggle immensely in finding answers. Some of us, like me, even know our diagnoses going into our appointments and yet still struggle to find a doctor willing to learn and listen long enough to provide us with the “official” medical confirmation. Don’t get me wrong, we all struggle. From the obvious to the subtle, to live with EDS is to suffer, but even a small amount of recognition and a slight increase in awareness of our disease could go a long way towards improving all our lives.
EDS does have a very distinct clinical picture, but I don’t believe that’s the picture that’s well-known presently. The lack of awareness around EDS and its multi-systemic presentation needs to change.
The first time I complained of recurrent chest pain and pain in my arms and legs, I was 4. Doctors searched for the source of my chronic hip pain multiple times throughout my childhood, but they never found anything, and eventually they stopped trying. Eleven years ago, I began reporting chronic fatigue. I was provided a variety of seemingly disconnected diagnoses, but it never made sense to me that everything wasn’t all connected. Four years ago, frustrated with no doctor even making an attempt to help me, I started reading medical research myself. Having now found a lot of my answers, I’m still frustrated for every individual who has to go through similar experiences, including having to repeatedly face pervasive intolerances and a complete lack of understanding.
I’ve learned a lot during my journey, but the fact that’s become most apparent to me is that nothing is going to change if no one talks about their experiences. So, in honor of all the zebras out there, here are 23 things people may not know about my invisible disabilities.
1. The chronic conditions and diagnoses I live with are: Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome /dysautonomia, fibromyalgia, chronic fatigue syndrome, attention deficit disorder, asthma, cervicalgia, occipitoatlantal instability, loss of cervical lordosis, hyperhidrosis, orthostatic hypertension, hypertonic pelvic floor dysfunction, acrocyanosis, erythromelalgia, Raynaud’s syndrome, scoliosis, hypokyphosis (flattened thoracic spine), vertebral rotations, temporomandibular joint dysfunction, chronic intermittent paresthesias, chronic migraine, bilateral headaches and allergies. Every day’s a surprise symptom party…
2. The biggest adjustment I’ve had to make is: Knowing I can’t do everything.
3. Most people assume: Everything comes easy to me, and because I look fine, I am fine.
4. The hardest part about mornings are: Getting out of bed + showers. Heat and prolonged standing exacerbate and intensify my dysautonomia symptoms. Washing my hair even causes symptomatic problems, as holding my hands over my head reduces blood flow return to my heart, causing my heart to beat even faster, making what should be a simple act of showering into an exhausting and fatiguing experience, as my heart works overtime trying to pump blood to my body.
5. A gadget I couldn’t live without is: My computer (research is my superpower).
7. Each day I take __ pills and vitamins: 11
8. Regarding alternative treatments: I am not opposed, but I want to do my own research.
9. Regarding working and career: I have too many interests for my own good. I want to do everything, yet – see #2.
10. People would be surprised to know: I’ve had never-ending fatigue every single day since 2005.