Q: The other day someone asked me what to say to the non-believers. The relatives who refuse to understand that your chronic illness is a legitimate disease that can’t be cured through psychotherapy.
A: I could be angry and sarcastic in response to this one, but I can’t seem to find the energy for it anymore. At 22-years-old, it just breaks my heart. If you’ve read my entries so far, you know that I’m still playing catch up with balancing my life and my illness. I’m struggling with medications, grappling with the realities of my low energy reserves and trying to break through the social stigma of rare illness to connect with friends as an adult.
The fact that there are people who have seen me my whole life—and who know, whether they want to admit it or not—how hard this has been on me and those who support me—and they just choose to not educate themselves. It blows my mind in the worst way.
Growing up, we had no idea what was wrong with me. I was in and out hospitals, on medications for depression and anxiety, overwhelmed by all my senses—and alone in a world of doctors who couldn’t help me and no one to say they truly understood. It even took my mom—who herself struggles with fibromyalgia— years to get it, and she is by far my biggest champion (even going so far to create a new TV series for rare and genetic diseases—more on this later.)
A few months ago I asked a family member to give blood to help with a genetic study that was being done on me by Baylor University. It turned into weeks of fighting for this one small favor. And I thought—if it would help a complete stranger get a diagnosis for a rare and horrible illness, I would give ten flipping vials of blood. And this relative couldn’t be bothered to just do it without complaint? (To give him credit: after weeks of hemming and hawing he finally did give blood. We should know the result of the genome sequencing in about six months.)
But it’s always a fight. And to some family members I’ll always be thought of as just mentally incompetent and a hypochondriac. I will never be seen in the light of the positive things I’ve accomplished in my life—in spite of my disease. There’s even controversy over the fact that I started a blog to share my story.
Not to point fingers at the specific relatives in my life who feel that not only am I an attention-whoring hypochondriac, but that it is their duty to tell me at every possible occasion that they are downright offended by my illness and the way it affects them.
(These people being the ones I would never ask to hold my hands through a test or run to the pharmacy for me in the middle of the night. No, these people are generally the ones who read my statuses on Facebook or hear from a sister’s brother’s cousin-in-law that I’m in the hospital again. And now I’m blogging about my sickness? Does the whole world have to know how mentally ill I am?)
My sister (who is supportive) recently explained it to me as just a frustration that I wasn’t getting any better over time. And that I understood—because it’s a frustration that I have too. I’m not getting any better and the terror of the realization that my disease is progressive has definitely inspired me to blog to find answers and support. And for a long time I took my fears and my illness and sat quietly in the corner for fear that people would judge me.
And guess what? They did. And as you can read here, strangers do too.
But I’m at a point in this journey where I don’t have to be alone anymore. I have gotten some exclusionary diagnosis and there are people out there who can totally relate—and having been undiagnosed for most of my life means that I’ve adaptive to my disease in ways that many people probably will never have to. And because of that, I can help them.
It doesn’t have to be this bad for everyone. They don’t have to be afraid of whatever new symptoms and situation come next, because I can show them that there is a way to get through everything. And for those situations I haven’t been through—I can finally find support from other patients who have.
My chronic illness is rare, and so resources are sparse and doctors are tentative in their treatments. This isn’t cancer, there isn’t a support group on every street corner, and there isn’t a knowledgeable cardiologist in every zip code.
Because of late diagnosis and multiple symptoms, the social stigma of having a chronic, rare illness is one that leaves you feeling a little like you just got slapped in the face out of the clear blue. There’s little to say to relatives who accuse you of being mentally ill, and even less to comfort yourself with after you break those bridges which can only serve to humiliate and weaken you further.
So in response to the relative who just doesn’t get it—let me know when you’d like to get it. Because your ignorance is the worst kind of disease, and only you can cure it.