Social media has no shortage of “pro-patient” posts. What to do and say, what not to do and say. What color to wear if you care. The constant stream of 10 bullet points about the life struggles of chronic illness.
Then you find pieces that dig a little deeper like, “Why Won’t Apologize for Having Fun While Being Sick.” Or something like that making the rounds today. I don’t remember exactly because I read it waiting for a CT after three doses of Dilaudid.
I wish I felt like I had something sage or eye opening to add to this veritable internet catalog, but I don’t. I only have my truths. The majority of my three-hundred-some (I don’t count, but I know it fluctuates. Not everyone is prepared for my level of enthusiasm for Bernie Sanders, dogs, and self-photography.) Facebook friends know me well. They know that I work for a living, that I care about my community, that I love my children, and that I do nearly everything within reason to be well despite knowing that I will be unwell a fair amount of the time.
What I am getting at is that I’m a real person. So when you see the patient awareness memes and articles, consider that it is someone you know and very likely many someones that you know, even if it is just the cashier you thought was a jerk when they were really just exhausted and hurting.
Chronic illness is not a one time (or two or three time fight); it’s not a phase or a season. Each day you are well is one day closer to your next hospitalization. Every day that you are down or in-patient, it takes twice as much time, or more, to get caught back up. So when, your email goes unanswered or a collaboration doesn’t go at the speed you would like, please don’t take it personally. That person’s life is likely on pause. Maybe for a day. Maybe for weeks or months. Their direction and ability may have changed entirely since your starting point. It happens in the blink of an eye. The photos attached are me 16 hours apart. The first was last night making dinner for my parents and family, getting the kids prepared to go back to school, walking the dogs, doing laundry, going to work, etc. The second is me ash-gray after being admitted to the hospital today, temperature 95 degrees, now up to a strong 97 degrees F around 2 a.m., blood pressure bottomed out, dehydrated, and in pain roughly three times worse than natural childbirth (I know, I’ve done it).
August is autoinflammatory disease awareness month and I commit to sharing a peek inside this facet of my life for the whole month each year. I gladly skip most medical announcements the rest of the year, minus rare disease awareness week in February. Thank you to those of you who offer your love, support, and understanding. Thank you to those who just treat me like everyone else. All that being said, one thing is for sure, I am blessed beyond measure. Sharing is cathartic.
Sometimes advocacy is just sharing your truths. Some people with empathize, some people will roll their eyes, but hopefully it will offer perspective. Perspective for other patients, for their caregivers, for well-meaning acquaintances, for coaches of kids with sick parents, and for those who have a “lazy” co-worker who is always sick.
The Autoinflammatory Alliance is a nonprofit organization dedicated to helping those with autoinflammatory diseases.