My body is a mess. It’s my mess though, and I’m working to organize that mess into a slightly more organized chaos. It’s not an easy process.
I was pretty healthy growing up. At least it seemed so for the most part. I had issues communicating what was going on in my body and thought maybe I was being dramatic or exaggerating what was actually going on. Whenever a puzzle piece is put down and finds its place when it comes to my body, the memories flow in. I didn’t know I had asthma for years, and when the diagnosis came I suddenly remembered asthma attacks in gym class. When I was diagnosed with panic attacks, I realized that rib crushing feeling and impending doom had a name and triggers. Hell, I spent almost two decades of my life not actually knowing I was autistic. Now that I’m in my mid-thirties, it’s unraveling every mystery brewing underneath my skin. Oh, and also on top…thanks eczema! I realized I didn’t have to hide the things I though I was just being “dramatic” about, I had a right to unlock my mysteries and have access to do so. I had to find answers for what many thought I was just making up excuses for.
People often ask why I didn’t do things sooner or know sooner. That you can thank the American healthcare system. My father was in the navy so growing up I had some basic health insurance. When my parents split and my dad got sick, money got tight so extra expenses for medical care just weren’t in the budget, not even a copay or prescriptions. On and off after I turned 18 I had some basic insurance until I was 23. Each time I started a new insurance, it was like starting over at the very beginning. Each insurance company had to do their own referrals, cross off every x and dot every i. It took time, it took patience. After 23, I was screwed trying to keep insurance, especially with preexisting conditions like (then known as) Aspergers or a worsening back injury & degenerative disc disease. It wasn’t until “Obamacare” that I finally got insurance I had good enough coverage on, and I wasn’t piling up emergency room and clinic bills. Before finally getting stable healthcare, I had accumulated thousands of dollars in medical bills. Not having a regular doctor meant I didn’t get regular treatment. Emergency clinics want to get you in and out so they do whatever is quickest. Everytime you go, it’s like starting over again. Some meds, a few suggestions to what it may be and a lot of paperwork. Stable, steady healthcare is a necessity for all human beings. For those who have prexisting conditions and those who just need preventative care. Who knows where I could be healthwise If I had access to something like the Affordable Healthcare Act sooner. Yes, There are very just complaints about Obamacare. I will admit I’m one of the lucky ones whose life it saved without further impacting my already fragile and irregular income. I count my blessings though, because who knows where I would be now without it.
Over the last five years, it’s been a slow, but rewarding process. I moved midway through the process from Orange to Los Angeles county which set me back a bit, but I’m understanding my body, what’s going on, and getting help where I need it. I had back surgery on one of my damaged discs, and we were able to identify just what is going on with my damaged ankle – a cartilage fracture, loose tendons & arthritis. I was just finally fitted for AFO’s to help give my ankle stability, but surgery is on the horizon…when my insurance decides to stop sending me through the ringer. It’s also not always easy dealing with social limitations either, one panic attack can force me to cancel an appointment and then go back into waiting for an appointment. Some doctors understand, and some don’t get it at all. Some surprise me with their knowledge of the complexities of autism and some shock me with their complete ignorance and outdated information. There’s been times where other issues with my body have forced me to miss appointments with one doctor to rush into another. It’s a lot of referrals, a lot of waiting, a lot of patience, but I’m grateful I have the chance to at least begin poking at the surface of the issues I’m not very familiar with yet. A chapter with many sagas that currently includes the yet to be diagnosed saga currently being played out in my uterus. A saga which currently is currently waiting for an endocrinologist referral. Patience isn’t one of my strong points, but I’ve learned to harness it when it comes to anything regarding my healthcare.
Like I said, there are annoying points in the referral system too. My ankle specialist knows I need surgery, but the insurance is making me do everything else “just in case”, because they will take any cheaper route than paying a surgeon, even if its non-invasive surgery that means I wont have to keep seeing so many doctors. I had one back surgery, but because I switched insurances when I moved (I tried to remain on my old insurance but couldn’t because of county lines) I am starting completely over with my back, even though we know exactly what’s going on. I have to restart physical therapy, all the scans, poking and prodding. This includes painful epidurals that don’t work for me but the insurance has to clear it. But I endure it because I’ve been on the side with nothing at all. I waited almost a decade for basic answers, to begin my journey with healing. It’s why I ask my doctors “too many” questions and argue when they make assumptions. (ie: the time my primary care doctor tried to say I needed to not shave with dull razors because my eczema was flaring. I rarely shave my legs. I showed her how hairy my legs were, stood my ground, and got the treatment I desperately needed and that flare up was better in two days.)
I will continue to share my health journey because I’ve been on the other side too. I also recognize that being mostly white, and definitely white passing, I receive more help healthcare wise than my POC peers. I am fortunate enough to have what I have now so I won’t go back to my previous distress when help is available for me. Who knows how long it will last either. I could lose my insurance at anytime, so getting answers now is crucial. Plus, Maybe my honesty and openness and can help someone, even just one person. Maybe my continued fight will help someone find the hope to continue their own. Maybe when I go into PT multiple times a week, even when I’m overwhelmed and non-verbal, it can help someone else get into overwhelming appointments. I am loud about my struggles because for too long it was silent when I struggled and needed answers. If sharing one thing I went through can help someone, none of it is ever in vain. Hell, I’ve even considered being in medical test studies not for the money, but to help others get answers…but the anxiety issues & mysophobia are block me there but who knows? Being in therapy, maybe that can be conquered too. Maybe those questions can be answered as well. For now, I’m just a student and my own body is the professor trying to educate me and I’ve got a LOT of homework to do.