I’ve been a sickly person all of my life. I’ve gone rounds and rounds with doctors since I was five years old. Few have been good experiences. Almost none brought me any answers. My entire life I have dealt with pain, not your typical sore-after-a-workout pain or I-stubbed-my-toe pain but gripping, debilitating, sob-producing, whole-body pain.
Along with this pain, I’ve had recurring and often severe infections: sinus infections, ear infections, bronchitis, pneumonia and more. I’ve dealt with recurring gastrointestinal issues: nausea, vomiting, food sensitivities. I’ve dealt with allergies to nearly everything: penicillin, amoxicillin, neomycin, nickel, weeds, trees, grasses, molds, shellfish, kiwi, latex and the list goes on. I have skin problems: easy bruising, easy tearing, weird scars, petechia and the list goes on.
I was active in sports through junior high and into high school. I rolled and sprained my ankles nearly every season of sport I was in. In 2002 I dislocated my knee cap and that ended my sports ventures. It took about six months of physical therapy to get my patella back in place and this injury never completely healed. I deal with intense knee pain and inflammation to this day, more than 10 years after the original injury.
In 2005 after returning home from a summer in France, my symptoms became much more pronounced. The biggest one that was recognizable was fatigue—bone deep, life-draining, disabling fatigue. I went rounds with three different internists, who if you are familiar with the television series, are essentially “Dr. House.” They told me I had migraines and sent me home with migraine meds. A few years later a family doctor told me I had lupus and began treatment as such, even though my test results for lupus were inconclusive.
Finally, in September 2012, I saw a rheumatologist who recognized the hypermobility of my joints as Benign Hypermobile Joint Syndrome, which is the same as Ehlers-Danlos Syndrome Type 3 (Hypermobile Type). Once I started researching EDS more closely, my life started to make better sense to me. The diagnosis, unlike others, fit perfectly. I need more testing before I will have my exact diagnosis pinned down. I need to be tested for the vascular type of EDS as I demonstrate several criteria for that diagnosis.
Since my diagnosis I have started new anti-inflammatory medication that is helping with pain management. I have also been through a physical therapy program and am working with an occupational therapist to make sure I have the braces, splints, and other supports my body needs to prevent irreparable joint damage. Right now, my big goal is accessing finger splints that are durable and affordable. Below is a picture of my hands. Every joint that is wrapped in blue tape, needs a splint.
(Photo (c) J. d'Artagnan Love. No use without permission)
I am able to live my life with this invisible disability just a shade different from “normal.” Every day is different. Some days I feel great with low pain levels and other days I can barely walk. I have to be careful not to become too stressed and to make sure to get plenty of rest throughout the week to fight off the fatigue and help my body fight off infections. I have to be careful to avoid spending time with people who are sick, to wash my hands frequently, and disinfect my living and work spaces to prevent infection because even the common cold can turn into pneumonia once my body talks hold of it.
There are many emotional adjustments with this as well. I’ve had to learn what my new “normal” is, what I can and can’t tolerate. I've had to grieve the loss of certain things I can not do ever, and things I’ve had to give up. For example, I wanted to join the roller derby team as a ref but there is no way my body will allow me to do that. I love to travel, but I have to be very, very careful about how I travel, where I travel, and when I travel.
EDS has limited me in so many ways, but it has also opened up doors of opportunity. It has given me a new avenue of writing and advocacy. It has allowed me to really think about what I want in my life so that I can let go of the things I just was “sort of interested in” and find ways of doing what I love, even if I have to make some adjustments to how I do those things.
That is my journey thus far, my story, my testament. I will keep you posted on what I learn and how my disease progresses, at least to a level I’m comfortable sharing online for the entire world to see. I am happy to answer questions via email at j (dot) dartagnan (dot) love (at) gmail (dot) com.