To My Chronic Illness, From the Person Who Is Glad to Finally Know Your Name

Dear Ehlers-Danlos Syndrome,

Oh, hi there. I didn’t notice you for 25 plus years. Where were you hiding? My connective tissue? Well, I guess I wasn’t expecting that. I was working on the assumption that if there was a problem with my collagen that I’d melt into the ground like some sort of disappointing candle on a hot windowsill.

Maybe you could have written me a letter, dropped me an email or just thrown
up some kind of red flag so that I knew you were there. You were like a mystery, except there was no previous mention of the perpetrator. It took doctors
well over a year to work out that it was none of the obvious characters like Mr. Arthritis or Mrs. Endometriosis. In fact, they were more inclined to doubt there was a mystery to solve in my body and preferred to believe I was making it all up. I knew you were plotting and wreaking havoc, but no one believed me and I didn’t know your name.

Don’t get me wrong. Now I that know you have always been here with me, it gives me a sense of relief. It’s not normal to be this sore or this tired all the time. I am genuinely injury prone and slow to heal. My sub-par general heath and allergies to the world are explainable now. I just wish it always had been and then I wouldn’t have been called lazy and work shy.

I feel like I spend my life swimming against the tide for a reason. You’ve always been pulling me back and pushing me down. I just thought everyone felt like this. I’m glad I now know your name; it stops me from blaming myself.

I have to ask, why me? Perhaps the odds just weren’t in my favor. I wouldn’t wish this on anyone. I just want to know why you chose me.

Just one last thing: Do you think that you could let me know when you’re planning a party with all of your chronic illness friends? I know conditions like you often come with a gang of buddies because that’s just how you roll, but I like to make plans, too. If I knew when you were planning a gathering, I’d at least make sure I had food in the house and clean clothes for a few days. I don’t think that’s too much to ask.

I hope one day modern medicine will allow me to understand you better and allow us to co-exist with slightly more harmony than the status quo. I’m stuck with you, at least unless doctors find a way to evict you from my body, in which case, don’t let the door hit you on the way out.

Kind regards,

Lauren King

Lead photo source: Thinkstock Images

Find this story helpful? Share it with someone you care about.

Related to Ehlers-Danlos Syndrome

stressed out young professional medical worker isolated on a white background

To the Inadequate Doctor Who Doesn't Understand My Illness

A note to my inadequate doctor: Ehlers-Danlos syndrome (EDS) is a genetic disorder I will have for the rest of my life. I will not be completely healthy by the time I turn 29 due to just medication and physical therapy.  EDS feels like the day is over, before it’s even begun. EDS does not [...]
woman standing with hands on hips on a beach

To Those Who Wonder Why I Bother Trying If I'm Really So Sick

As someone who is chronically ill with a multitude of illnesses, I get asked sometimes why I even bother trying. To give you some context, between doctors’ appointments, infusions, surgeries, and hospital stays, I’m a full-time speech-language pathologist (SLP) student and hold down a part-time job at a preschool. Classes just started up again and I was appalled when [...]
Girl watching the stars.

When It Finally Hit Me That My Condition Has No Cure

When I first began my journey with my Ehlers-Danlos syndrome (EDS) diagnosis, I had read that it is an incurable, life-altering, lifelong illness that could end my life. But because of the whirlwind of emotions in finally finding the answer and diagnosis, and waiting for the appointment with the genetics team, it didn’t exactly “click” at first. I was wrapped [...]
The shadow of a man walking

When Fear Overshadowed My Relief Over Receiving the Correct Diagnosis

Fear doesn’t discriminate. A function of fear is to let you know when you aren’t safe. Fear is a protector, but fear can also be debilitating. This kind of fear makes your head spin as though you are on an endless merry-go-round, constricts your body, and shuts you out of the world. Fear is unfortunately a familiar friend. It first [...]