Successful Mast Cell Patients
For all their different symptomatic presentations, “successful” mast cell patients (and rare disease patients generally) do typically have some things in common:
1) They’re good scientists.
They're patient and know how to isolate variables, making one change at a time and keeping track of a number of factors in their diets, lifestyles, and things they come into contact with. They understand “good” studies are repeatable, but that their triggers and reactions might change; they’re constantly engaging with this phenomena like scientists, trying to knock out their biases (which is a particular challenge when the subject is one's own body), making the best guesses they can with the information they have, and doing everything they can to make sure their experiments are as unclouded as possible by other factors.
Often, their self “research” and careful attention puts them in a better place to make decisions than medical providers and gives them the confidence they need to dump the doofuses who are inclined towards statements like “Everybody does fine with...” and “Maybe if you take some anxiety meds first...” They might not know why drug X or situation Y cause a problem just yet, but they’re open to learning about it without putting themselves in danger unnecessarily.
2) They're adaptable.
Symptoms change. Triggers change. Best path forwards change. After almost any rare disease diagnosis, or even less rare diagnoses, lifestyle changes are often important. Successful patients roll—and even thrive—with these changes. When life throws them a curve ball or a frustrating new diagnosis, they find new things they enjoy, new goals, and new way to self-actualize.
3) They know their priorities.
Each patient’s will be slightly different, and that’s okay, but if you fall into this patient group, it's important that you know what matters to you and what you’re willing to give up….because, especially in the “slow progression/ups and downs” kind of cases, you’d be surprised how many times this scenario comes up:
Karen (I’m told ‘Karen’ is a generic here. I’m sorry to any non-Kareny Karens out there.) likes to eat salad because Karen likes to be healthy. Just see her blog. She has recipes. She has jars. Unfortunately, salad is a major trigger for Karen—maybe something in it’s a mast cell trigger, or it worsens her Chron’s symptoms, or it flat out stops her digestion and leads to complex surgeries to remove blockages from just your garden variety gastroparesis. You meet Karen when she’s in the hospital after one of these incidents, still blogging, and “not giving up.” On the salad, not on life. She’s determined to be NORMAL. She won’t even try some ingredients in a less salad-y form. She’s determined to be a beacon of hope, an INSPIRATION, and to do that for her "healthy" minions, she needs to be a role model, eating the salads herself, in salad form. I assume no one has asked Karen, in all her trademarked positivity (actually trademarked. Again, see the blog.), “Okay, but you’re unlikely to get out of this hospital, and you’ve nearly died countless times before you reached thirty-five. How much do you want the salad?” Even on my best days, I struggle to respect Karen's self-proclaimed priorities. To me, Karen’s salad is a not a beacon of hope, but an indicator she needs to be referred to psychiatry for evaluation (likely because she’s in denial about her condition or otherwise unable to process how serious this condition is). But in the end, I’m not the judge of the salads. You are, if you’re in Karen’s situation, and you need to be able to consider risks, compromises, and coping strategies and make the right decisions for your salad values.
Maybe you want tacos, but you also want to be able to breathe. Maybe you don’t want to take any pharmaceuticals, even OTC ones (Who does?) but you’re now facing a number of cancers or other conditions you thought they caused (and of course are now on 40 much more daunting treatments with a number of much more serious side effects) and still want to avoid pepcid because someone online told you to. Do you sign the hospital’s release form refusing this treatment? Or maybe you're trying to make decisions about everyday life. Do you rest up and take extra meds to attend your child’s graduation, or if this is a danger to you (and the day), do you use your energy to participate in some other significant way and Zoom in? Is it the picture or a shared memory that matters here? Do you compromise your health or your relationship to appease a fair-weather friend or partner?
4) They know their worth.
They aren’t afraid to speak up for themselves, to dump doofuses, and to mercilessly cut down their circles when they need to. They know they deserve adequate care. They also know anyone who doesn’t accept them in their masked, oddly-dressed, makeup or dye-avoidant, non-drinking, non-eating, and so on state isn’t worth their time. I’ve been startled to find many of these patients are all “peace and love,” but (and maybe because) they block phone numbers.
These patients, particularly when surrounded by loved ones in denial (or worse) are remarkable. They send parents out of consults and get kicked out of ER’s for refusing radiology without appropriate premedication. They know who to call in case they’re admitted on a psych hold for this (correct, merited, frequently necessary) behavior and, in the simplest terms, they don’t take any shit.
5) They're creative problem-solvers.
It doesn’t matter how experienced you are treating these disorders. If you spend enough time with patients, you will be consistently baffled by their ingenuity. If the average hopeful, mast cell disorder-coping, likely neurodiverse individual were up for some position like world dictator, I would vote for this person with complete confidence in their ability to solve ANY solvable problem they wanted to solve, even the ones I didn’t think were solvable. Dare we hope more of them will go into research?