“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.
“In this world you’ve just got to hope for the best and prepare for the worst and take whatever God sends.” – Lucy Maud Montgomery
Hope. Without it, what do we have? If not for hope, life is just a static repetition, day after day.
Hope is especially important when going through hard times. When each day brings new challenges and it feels like things are getting worse, what do we have if not for Hope? One of the hardest things about chronic illness is feeling like you are going backwards, things are getting worse, and you have trouble seeing the brighter days ahead. But Hope is what allows us to push through to the next day and get out of bed in the morning.
“Never deprive someone of hope; it might be all they have.” – H. Jackson Brown, Jr.
“Success will never be a big step in the future: Success is a small step taken just now.” – Jonatan Martensson
In case you don’t already know, it has been a rough couple years for me in terms of stomach issues. I have had complaints of stomach problems for 8 years, but it wasn’t until 2 1/2 years ago that I went gluten free. Even after going gluten free I have never completely felt 100% better. Recently I tested positive for fairly severe gastroparesis, which means I have delayed gut motility. My dietitian also thinks I have something called small intestinal bacterial overgrowth, which frequently occurs in patients with gastroparesis. The treatment is a sugar-free diet. Sugar-free, as in, no carbs, no ketchup, no pickles, honey, or cereal, or fruit juice… or happiness. Just kidding 🙂