Today is Rare Disease Day, the day the zebras show their stripes and remind everyone that hoofbeats don’t always belong to horses. It is the last in a month full of awareness days for us (Feeding Tube Awareness Week, CHD Awareness Day/Week, Heart Month, and I think I might be forgetting one), but I haven’t participated in any this time around. Things with K are really challenging right now and we’ve been too absorbed by living in our conditions to do much in the way of raising awareness for them.
I don’t go into the details of K’s medical stuff as often or as publicly as I once did. It isn’t that it is secret or that I don’t talk about it, it’s just that she is older now and I try to give her a bit of privacy in online spaces. It doesn’t mean that things are calm or easy, though, which can be the unintended impression that it gives. She’s had several worrisome things flare up recently and not shown any sign of resolving, leading to a slew of appointments and tests that may or may not give any answers or direction.
Rare diseases are so challenging, and often isolating, because people don’t automatically understand anything about them. If you say “cancer” or “heart defect“, there is an immediate understanding of the weight of the burden and at least a vague outline of the challenge ahead, but with rare diseases you have to explain everything all the time, even to the doctors. Life is spent in the weeds, describing each individual weed and rock and creature to everyone who might be able to help, with the hope that one day someone can put the swamp you are sinking into on the map and tell you how to successfully navigate it; but you do so knowing that the map may never get finished in time for you to use it. Sometimes it feels a little too much like that scene from The Neverending Story with Artax in the Swamp of Sadness (except Artax is definitely a zebra in this scenario).
There is so much shrugging and guessing and bullshit and fighting that comes with rare or poorly understood diseases; it’s insurance battles and navigating around egos and staring endlessly at puzzles that can’t be solved yet and noting symptoms that make your heart want to just throw itself on the floor in protest and shout “ENOUGH ALREADY!”. The hardest part of it is not to be able to fix things for your kid or even reassure them that you are on the right path, but you keep going, because you have to. We all know what happened to Artax. So you prod and encourage and question and organize and set alarms and dispense meds and push fluids and check vitals and ferry to and from appointments and hospitals and even though there are never any promises you hope, hope, hope that progress is being made and that your team is on the right track and that “better” is just beyond this mucky swamp, just beyond where your eyes search the horizon, and that your feet will find solid ground again if they just keep moving forward.
So today, as you scroll Facebook and see people posting about their rare diseases or the diseases of people they love, take a minute to try to imagine what the weight of that burden might be and what the challenge ahead of them looks like from their perspective. Maybe think of a way to show them that they are seen and loved and not alone, because some days those small but mighty things are the very things that give us the extra strength we need to keep moving forward.
February 28, 2019 at 8:42 pm
Can I share this on my FB page. People just don’t know about this disease, but my friends will pray for a cure or a clue to help resolve it. My friends know Katie through me❤
March 1, 2019 at 7:06 pm
I see you. I see you and the wonderful, loving mother that you are to all of your kids, and I see the struggles Katie goes through, and how brave she is.