“For a while she considered being ill, but she changed her mind.” – Tove Jansson
There is an expectation in the world of care-providers to never label someone by leading with their diagnosis. For example, you should never say “the autistic kid” but rather, “the child with autism.” We would never say my cancer friend or my Alzheimer’s grandparent. Out of respect for the person, we are taught to name the disability after, as to not make the illness own the patient. The term we use is person-first language.
So why then, if our medical providers (attempt to) treat us with respect, do we (as patients) so often label our own illnesses or disabilities ahead of ourselves? Why do we classify ourselves in terms of the diagnoses that so often bring us down?
It’s here! The countdown to rare disease day comes to an end. However, since I started the 100 Positive Days very late, I will keep going on into March, April, and May! In any case, I thought I should stop and take a minute to share some education about the rare illnesses that I have, and hopefully bring some awareness.
Ehlers-Danlos (EDS) is a genetic connective tissue disorder, which can present itself in a variety of forms or types, including a vascular form which can be life-threatening. However, I have type III, also known as “hypermobile” form. They call us “zebras,” – since we are often medically complicated and hard to figure out – hence the zebra on my blog banner. Hypermobile EDS, also often identified as “Joint Hypermobility Syndrome”, affects 1 in 10,000 people. What it means for me, is I do not have enough collagen and my joints are very loose and stretchy. I’m really good at yoga and gymnastics but should never be allowed to do them because there’s a good chance my joints will dislocate or at least sublux (partially dislocate). I have severe joint pain and my shoulders often sublux, creating further trauma. EDS is the cause of many of my other issues, including two I will mention below, so diagnosis is important to help understand other symptoms. Often a rheumatologist or geneticist can help make the diagnosis, which is typically made from physical manipulations (beighton scale) and symptoms, rather than genetic testing.
“When it comes to life, the critical thing is whether you take things for granted or take them with gratitude.” – Gilbert K Chesterton
Today I am thankful for the gift of exercise. I know I recently wrote about strength and that it isn’t all about physical muscle, but the fact that I am able to get out of bed every day and use my body, is a blessing.
Yesterday my mom and I took my dog for a walk, in keeping with our new Saturday tradition. There is a great walking path where she works and my 10 year old dog helps us keep a good pace, wet nose leading the way. Yesterday evening I used my therapy bands and equipment and did some exercises. Some days, my body just is not up for exercise and my joints ache so much that it’s impossible to do even the easiest exercises. But I can’t get in the habit that I often fall into of letting that be my normal, and taking for granted the days when I do feel well enough to work out. I have to be thankful for those days God has given me and use them to my advantage so that I will hopefully have more of them, the more I stabilize my joints and gain muscle.