Yep, I’m attention-seeking when I post about my illness online. 100 percent, you betcha. Not for the reasons you might think, though. Not for myself, but for my conditions. Imagine for a moment what life would be like trying to explain multiple chronic, debilitating disorders, diseases and genetic anomalies that people cannot pronounce, much less understand. Then, further reach into your imagination and put yourself also into the position of having hundreds (literally, actually plural) of tests, exams, misdiagnoses – all with providers that also may or may not understand, much less pronounce correctly. Let’s not forget about testing facilities that don’t know how to properly follow protocol to actually test for what you have.
I don’t have something easily recognizable, explained or treated. I will carry my diagnoses through my whole life, they are not curable – yet. That’s the whole reason I’m talking about it.
Some days, depending on my makeup application and extra diligence with a cheesing smile, I can get away with fooling you that there is absolutely nothing the matter. All of that, of course, is a farce. And it’s one put in place to prove to you that no – *I* am not attention-seeking. To the contrary, I’d prefer you not ask how I’m doing, because the answer is mostly always the same. But what I would like you to know is all about what I struggle with physically, not so I can wear a cap of pity and blow out the sad candles on my gluten-free, vegan, allergy-friendly cake, but so that it burns it in your mind. I want you to talk about me.
When someone mentions that they have a friend of a friend whose daughter was just diagnosed with POTS, or Chiari, or MCAS, or Ehlers-Danlos syndrome, I want you to remember me. I want you to put her in touch with me. I want to be the connection point to help her avoid all of the unnecessary and demeaning appointments with uneducated providers. I want her to know what to ask without taking stabs in the dark. I want people to know and understand, to pronounce what I have. It is profoundly pronounced in my daily life. I do not want you to feel sorry for me; on the contrary, I want you to be happy for me that I am strong, educated and fearless. I want you to associate what I have with strength and advocacy. I hear many friends and family lament that they feel talking about their illness is embarrassing, or they are afraid they will be judged by the very people who are supposed to love and support them. The reality is that we need to talk. These conditions need to be on the lips of friends, family and acquaintances so they become recognizable, and therefore, researched.
One in 5,000 at least have EDS. About 80 percent of POTS patients are women. Mast cell activation syndrome is often found in both POTS and EDS patients. Chiari malformation occurs in about one of every 1,000 births, but that is only what is caught. It’s thought to be much more common because often symptoms don’t develop until later in life. Joint and spinal instability, pain, tachycardia, GI problems, allergic reactions and fatigue; the comprehensive list goes on.
I’m not embarrassed to talk about what I deal with on a daily basis, and if your primary thought is that I am attention-seeking, you are missing the point. I am attention-seeking for the value of understanding, something totally different.