To People Staying Home, From Someone Who's Immunocompromised

Dear everyone who is staying home right now,

I want to start by saying thank you.

I know you miss your family, friends and co-workers. You miss niceties like going out to a restaurant to eat, getting a haircut and going to the movies. You may be struggling financially as well as emotionally. You miss your old life, with its sense of normalcy. I realize this is hard on you.

I see the sacrifices you’re making to help protect people like me.

You know you’re helping to protect vulnerable people in an abstract way, but I’d like to let you in on how your decision to do the right thing is impacting me personally. I have hypermobile Ehlers-Danlos syndrome (hEDS), which is a genetic disorder causing my collagen to be fragile. Due to the impact fragile collagen has on my body, the tissues around my joints have small tears and inflammation. This means I’m constantly healing from injuries, and it causes my immune system to be nearly as robust as a limp noodle. This means I get sick easier, get more severely ill for a much longer duration than most people and don’t bounce back from even minor illnesses easily. The common cold can knock me back for as long as six weeks.

Fragile collagen also means critical areas for the coronavirus (COVID-19) — a new-to humans virus that causes respiratory infection and can lead to serious or fatal health complications — treatment may be difficult or nearly impossible to access on me. My veins, for instance, are small, fragile and cause IV cannula to puncture through the walls of my veins, therefore leaking fluids into the surrounding tissue, instead of into my bloodstream where it belongs. I once had to have my IV cannula changed 17 times in 24 hours due to this issue, and if we’re being honest, ICU staff simply don’t have time to babysit my veins right now. This is a major problem for the delivery of essential fluids and medications to treat critically ill patients. My joints subluxate and dislocate, which poses a problem for ventilation, as my neck is unstable. It poses a problem for positioning me, as some joints slip significantly if I am in the wrong position. These are just a few of the curveballs my EDS will likely throw at the medical profession should I become seriously ill.

Horror stories of hospitals triaging critically ill patients for ventilators dominate the media. As someone who is disabled with a disorder that impacts my body in ways that can make COVID-19 difficult to treat, one question haunts me. What if I’m triaged for a ventilator, and the medical team declares that I’m not worth it because an able-bodied person also needs ventilation support? Wondering whether or not I’d be declared “worth it” for lifesaving measures is confronting and not something I thought I’d ever have to ponder as someone fortunate enough to be Canadian and have access to universal healthcare, but here we are.

Thanks to you, that question may very well never need answering.

Thank you for reigning it in for the bigger picture. Thank you for taking this lockdown seriously to help strangers that you’ll never meet.

I feel much more comfortable when my husband goes out every 10 days or so for groceries, or to pick up prescriptions, because of the sacrifices that you’re making.

I’m more comfortable knowing when you do have to go out for essentials, or if you’re an essential worker who can’t stay home, you’re doing the responsible thing and maintaining proper physical distancing measures, and staying two meters (six feet) apart from everyone else.