The following is a guest blog post from Snarky Frog. Yes, that’s her real name. Ok. You got us. No, it’s not her real name, but that’s how she wants to be known online. Who are we to judge her if she loves frogs and snark that much?
There was a time when I blogged. There was a time when I wrote about living with POTS (Postural Orthostatic Tachycardia Syndrome) and EDS (Ehlers Danlos Syndrome). There was time when I wrote about having a parent who…well…if I were to explain in this piece, I would lose all credibility.
There was time when I thought people would read what I wrote. There was a time when I thought people would care about how my father died (Yes hospital in CT, I do hold you accountable for that).
There was a time when I thought people would care that when I was half conscious after fainting, a nurse took it upon herself to show me what happens to drug users – apparently folks who use drugs have no rights to sexual dignity.
I wasn’t using illegal drugs then and I don’t now. The more you read about POTS patients, the more you read about how strange our symptoms are. I still argue my symptoms don’t matter, the way I was stripped of my humanity did and still does – turns out nobody really agrees with me. Guess you can do whatever you want to drug users (I’ve since learned this again and again via EMTs and others). As it turns out, you can also pretty much do this to patients you think are faking their disease.
There was a time when I blogged about how I couldn’t understand that a patient advocacy org promoted things one day, disagreed with them the next, then went back and forth for years. By the way, what’s still up with that? Will exercise heal me or is it IVIG I need or is it small fiber neuropathy all around? Oh… you need to study more – well hate to tell you patient group, if I need IVIG, exercise won’t save me. Though, it honestly may help.
There was a time in life when I questioned things. There was a time when I wrote. There was a time I cared. I probably still do all of those things but I do all of it less.
Nobody cared what I wrote so I stopped publicly blogging. The things I tried to get folks to care about – I was on my own with. I wrote but my writing was for me. I took my blog pieces down one by one.
By that time my writing abilities were somewhat gone after I had taken a few too many hits to the head. Things became mostly jots on google docs. My posts are now long gone into the ether and even the WayBackMachine can’t find them.
Right now I could write about not having a single doc who knows much about any of my diseases. I could write about having 3 different specialists who each understood different pieces of EDS / POTS leave their practices in the same year. I could write about fighting with hospital billing offices. I could write about how a doctor who played a role in quality affairs at an academic medical center could literally get nowhere with my insurance when he tried to get me some assistance. I could write about the discussions I have had with the insurance co regarding how much my POTS costs them (about 90-100K in 2015, likely to be more this year) and the various suggestions I’ve given them to lower those costs. I could write about how they respond with the fact that none of those suggestions, while cost saving to them, are part of my plan, and as such, are not things they can or will do.
I could write about my grief over a friend. I could write about the things I saw happen to her the one time I visited her in the hospital. I could write about how I wanted to help more but couldn’t.
I could write about system failures. I could write and I could write and I could write some more about how every single part of the system has failed me and has failed my friends. It might not all make sense but I could write. The irony is the thing that matters to me the least is the specific cost yet that’s what people care about.
I care about the fact that my friend died.
I care about my losses as a human being. I care how much of my human dignity I have lost and how much has been taken away from me since I started getting sicker. I care about the fact that I will likely lose my job (days off, their having to worry or perhaps lack of worry about my falling on the job, my requests for accommodations etc.). I care about the fact that I will never be able to do what I wanted to do with my life – PhD, fieldwork – yeah, not a chance.
I care about the fact that I will eventually get so physically injured by a fall, by EMTs, by hospital staff, or other that I will no longer be able to get out of bed. I care about the fact that I will forever wonder whether one of these things will kill me, and if so, when.
I can give you the health care cost numbers but they don’t matter to me. Ask any chronic illness patient for his or her own costs of care and you’ll find the same thing. Once you go past “typical” or “trendy” chronic illnesses, there is no care coordination, there is nobody to turn to for help, and your insurance company, well maybe they’ll pay for something and maybe they won’t. I do wonder, if I were sick and rich would I still be as sick?
One thing I do know, I’m damned tired of being sick. I’m tired of identifying myself that way and I’m tired of others doing so. I’m also tired of wondering if it’s in my head and tired of having people tell me it is. (And if it is all in my head, then please, by god, someone help me treat that.)
If creating a blog post that delineates each and every expense will help me find a doctor who can help me with whatever the heck is wrong, yes, I will write one. That said, that post would take away a part of me, the part that says humanity matters most and that’s what we should care about.
This post is part of our effort to remind us of the patient perspective by sharing patients’ stories. Thanks Snarky Frog for sharing your story with us. If you have a patient story you’d like to share, please reach out to us on our Contact Us page.