Title: The Only Difference Between Martydom and Suicide is Press Coverage by Panic at the Disco, off the album A Fever You Can’t Sweat Out which I also almost used for this post.
Image: In Providence. It’s giving Portal 2
As I mentioned in my last post, I was diagnosed with an autoimmune disorder this past winter. What’s cool about that is I no longer have imposter syndrome when I tell people “I think I have an autoimmune disorder”. I love having a name for the myriad of issues people often hear me complain about. I love having a patient record that specifically states said diagnosis and myriad of issues. I especially love being right.
The not so cool thing is… I have an autoimmune disorder, an incurable, lifelong, chronic illness. This reality hit me shortly after the initial high of being proven right — that I was actually sick. Like, sick in a way that if I lose my job again I’m really screwed. Sick in a way that I will get better and get worse in fluctuations with little to no predictability. Sick in a way that the medication I have to take makes me immunocompromised. Sick in a way that it genuinely gives me body-horror; I am stuck in this vessel whose complex system made to help keep me alive is also trying to kill me, stuck with a pain so deep and constant it’s unexplainable and there’s nothing I can do to make it stop, stuck in a perpetual fog with limited control of my body because of fatigue, my conscious mind trapped in a body that will not and can not cooperate.
I had known something was wrong for years, and after a bout of weird autoimmune hives that was inexplicable by the dermatologist, I begged for an ANA titer, which is usually the first test they do to check if it’s Lupus or some other autoimmune disease (it’s never Lupus). When my results came back, he told me they were “inconclusive” and offered no further testing or advice, and so I figured maybe I was crazy all along.A year later while prepping for a yearly physical, I saw on my patient portal that despite what the dermatologist told me, my ANA titer was positive. I told my PCP about my pain and my positive ANA, but he did not give me the rheumatology referral until I started absent-mindedly doing some weird back-cracking acrobatics in the middle of talking. This was apparently abnormal enough of an action for a 26 year old to warrant further testing.
So at long last, I made my appointment… then immediately lost my job and therefore my health insurance. I had to reschedule my appointment 6 months down the line and pray that I’d have a job by then. I ended up accepting a job because I had to.
The job exacerbated my pain ten fold, which luckily for me actually proved my disease. Never before did I have the joint pain (1 point, proven by MRI) and psoriasis patch (2 points) happening in tandem. Getting 3 points on the CASPAR is enough to diagnose. I also ended up having the 4th point for being RF negative.
I got the diagnosis in waves. First, my MRI results popped up on my portal and I read them by myself, in my bed, the morning after Valentine’s Day. I googled “sacroiliitis” and found that it’s one of the first signs of Psoriatic Arthritis. I cried. A week later, a PA, not my doctor, called me and informed me of the diagnosis. I pushed down tears of anger because I was offered nothing in terms of medication, pain management, or advice. More time passed, and I had to call the doctor myself to get more answers. She said she usually waits until the next appointment to prescribe medication but she could give me the rundown on the phone. She asked if I’m on birth control and when I said yes, she said good, with no further comments. She did not offer anything for the pain. I cried again.
So I got my diagnosis. Now onto medication, right? Well, Express Scripts took over a month to do the prior authorization, and Accredo (the specialty pharmacy) then took another 3 weeks to “confirm” and mail my prescription. The medication, Humira, is a self-injection done every other week that shuts down my immune system because it’s so dramatic and overreacts to everything. It also has a retail value of $7,300 for 2 shots, or $2,006 with insurance, or $0 with the Abbvie co-pay card (Side bar: I just found out if I ever make more than 90k I no longer qualify lol good thing I’m a writer).
From the day I made my rheumatologist appointment (June 2023) to diagnosis (February 2024) to the first dose of my medication (May 2024), nearly a year had passed. It had already taken me long enough to stop gaslighting myself to make the appointment in the first place, so the extra year felt like some sort of punishment. Especially when I ended up having the worst flare of my entire life completely unmedicated, unadvised, and paranoid about the potential irreversible damage happening to my joints.
There’s several studies on the negative health outcomes and economic burden of delayed diagnosis for autoimmune diseases, many of which note that it disproportionately affects women, and that patients with spondyloarthritis wait the longest (that’s me!). And if we actually look back to symptom onset (interval 1 in this study), my first occurrence of autoimmune-activity was at age 6 when I had chronic hives and when antibodies attacked my eyes and I was walking around half blind until my mom* noticed my eyes were cloudy, then at age 12 when I hit puberty I got my first patch of scalp psoriasis, and joint pain began about 7 years after that. Each instance was cared for in a vacuum, with no one finding out the underlying cause or connecting any dots.
I was angry at first with how long it took to be taken seriously. I wish we, as patients, weren’t so often told not to trust “Dr. Google”. Google is how I even knew to ask for an ANA, or to ask for a rheumatologist, or that all my symptoms were connected under the tree of autoimmune disorders.
It’s hard to advocate for yourself, especially as a young woman, but I implore you to seek first, second, third, and fourth opinions if you think something is wrong. If they deny you testing or care, ask that the denial be put in writing. Sometimes you have to see multiple types of specialists before you get to the root of the issue, and if one says it’s outside their “scope” then ask them what the next steps are. Ask every doctor what the next move is so that in between appointments you can be as proactive as possible.
Waiting for something to get worse before you take it seriously will only do more damage, both to your body and your wallet. Once it’s bad, it could be months before an appointment, and years before a care plan actually starts working for you. Getting on top of your health can mean the difference between remission and long term disability.
Bonus Content:
Let’s get back to the “me being right” actually…
To the person who told me I couldn’t possibly have psoriatic arthritis because I didn’t have pitted nails like she did.
To the person who made a joke about my pain being ‘psychosomatic’ and doubted my self diagnosis because I hadn’t yet had an MRI.
To my dermatologist who told me my ANA was “inconclusive” and didn’t offer any advice or further testing.
To the doctor who told me my hip pain was from stretching too much, and my chronic shin splints were from not stretching enough.
And to everyone else who thought I was being dramatic.
To my college friends, with love, who I made jokes with about being an old lady with osteoporosis and fibromyalgia. And to my brother, with love, who told a stranger at a concert that he was proud of/worried for me going into the ADTR pit because I had osteoporosis. We were (almost) right.
And to my mom, with love, who believed me.
* I failed my eye exam at school and no one told my mom. She saw my cloudy eyes all on her own. Who knows how long it was that I walked around like that. I do not remember being 6.
Damn, That's Crazy 