Okay, so I have some stuff going on with my health I feel I need to talk about. I was planning to write this post for a while, but kept putting it off. It’s simply just…hard to talk and write about. Posting about my experiences with autism isn’t always easy, but feels easy in comparison to talking about health issues- and how I’ve been dealing with it. I’ve been having a lot of fatigue and it’s been getting harder and harder to get my art done lately as much as I really want to keep at it. So I will caution you right now that this might be a lot for you to read as I get into some detail about my situation and how I got here.
First of all, I’m going to be very vulnerable and honest and tell you that I hadn’t seen a phyiscal doctor throughout my 20’s. I never had major health issues as a child. The only surgery and procedure I ever had was getting my wisdom teeth pulled out in high school. I only had one health episode in my 20’s when I had a stomach bug and had to go to the ER because I was so dehydrated. Looking back, I now absolutely regret this. In my 20’s, I felt like I was fine and healthy, even though I had engaged in unhealthy habits like smoking cigarettes and drinking a lot on weekends. I was more concerned about avoiding unpleasant situations with a doctor rather than properly taking care of myself. As an autistic person myself, dealing with health situations, primarily with health insurance, is even harder than it is for someone “neurotypical.”
So finally, just a year and a half ago in 2023, I was starting to worry about my health more. I found a PCP who was in-network with my insurance (despite the fact that insurance bills me for a portion of the appointment). I give my very loving girlfriend credit for helping me find an app to connect me to a doctor. I had first checkup and I told my doctor that I was feeling okay. He first asked if I wanted to do some blood work. I said no, worrying about how much insurance would bill for it. I regret that “no.”
I was in the United Kingdom with my family in September of 2023. My dad asked if I did some blood work. I told him I didn’t. My dad said that it would be good to get some lab work done. I was very hesitant to do that, again worrying that insurance would screw me over if I did. The way health insurance works in this country…well if you have health problems, you’re going to drain your wallet. That only happens in America due to bad politics and corporate greed. No one should EVER have to worry about losing so much money getting healthcare. But the fact that I didn’t have bloodwork done was bothering me so much that something might be wrong with me I never realized before…and months later, I took the initiative and scheduled some bloodwork. I was also having issues with insomnia, as I do from time to time.
I went into my doctor’s office and had my blood drawn around April or May of 2024. It was shocking how fast and easy it was- I was basically able to do several tests in what felt like one. I was more scared for the results and billing than getting the tests themselves. I followed up with my doctor who informed me that I was both “pre-diabetic and have low levels of iron.” I was prescribed some iron supplements and have been taking them the past year since.
About six months later, in October of 2024, I was having another bout of insomnia and had started having some tightness in my chest. I checked in with my doctor since I was really worrying about it. I got more bloodwork and got EKGs (heart test) and an X-Ray of my chest. My heart and lungs were looking good, which was a huge relief! However, after getting blood work done, my iron was still noticeably low. I saw that on my test result and asked my doctor about it. He then asked to do another blood test in a couple months.
I went back to the doctor to do yet more bloodwork in December. My iron was still found to be lower. In January of this year, I followed up with my doctor about it as it was the first available time for them. My doctor said, “your iron/ ferritin has been consistently low. I’m really concerned about this. I have never seen anything like this. You should get an endoscopy.” I was freaking out but there was a side of me that thought he was overreacting. I honestly wasn’t feeling so bad besides some fatigue, which I primarily thought was due to my autism/ anxiety burnout and oversleeping. The last thing I wanted to deal with was huge health insurance/ health bills because my insurance wouldn’t pay their part. My health insurance was more or less fine when I began with it, but ever since Trump took office, it has gotten so much worse. My doctor referred me to a gastroenterologist (GI). They referred me to one I couldn’t get into and then they referred me to another that was slightly out of network.
I was also referred to a hematologist via a connection through my family. I was hoping I could just go through them and avoid a potential costly procedure. They were able to get me an iron infusion. I got my infusion in February of 2025.
However, I was going to do a follow up lab and appointment with the hematologist only for them to call me saying “your insurance is out of network.” I wished they had told me that up front. And I wished, MODA, my health insurance didn’t give me a surprise bill after the fact for over $500 just for that first office visit. Of course I called them on the phone about it only for them to say “it is patient responsibility to check if you’re in network or not.” But this is also in violation of the No Surprises Act that was enacted into law in 2022 so there are no surprise insurance bills. I told the person on the phone this who said “well it doesn’t apply here.” I think MODA is honestly violating the law here. I really was under the impression for a while that every doctor in Portland, Oregon accepted MODA. But I also learned recently from someone I know that MODA has been having some financial issues and has gotten much worse. I actually tried to talk to my health insurance agent to see if I could switch, but they said I couldn’t do it now if I wanted to keep some tax credits as the Open Enrollment deadline passed on January 15th. But I will definitely be switching my insurance next time around. I have my healthcare through healthcare.gov.
Dental appointments, however, haven’t been nearly as much of an issue. I went to my dentist earlier this month in March 2025, and they said that health insurance has gotten so bad the last couple months all around. And my guess is due to the fact that Trump is back in office and he has antivaxxer RFK Jr as the head of HHS. I’ve had so many back and forths on the phone with my insurance with bills that I wouldn’t have expected. I was not asked for a co-pay up front. And well that has been, exhausting. Whenever I asked health facilities if I could get an estimate, their answer was always “we can’t tell until we bill your insurance.”
I saw the GI late in February 2025. I wanted to avoid them to begin with, but felt it would probably be for the best if I had a visit with them. Finally, I told them what I was experiencing as per their questions. I don’t want to get deep into that as this feels TMI. But they said that I would need to have an endoscopy. I have a sibling with celiac disease and they were suspecting that it was that due to my fatigue and using the restroom more than three times a day on average. They said this was “not normal.” They said that I would have to avoid “every crumb of gluten the rest of my life” if they did find I was celiac. I suppose celiac is somewhat of a relief compared to say, cancer. But my life would still be upended having to eat so carefully, which I don’t want to do. I don’t want to have to potentially have to pay more for gluten-free food which is already more expensive and a lot of GF products sold at stores just isn’t as good. More and more restaurants now have GF options in this day in age, but it still wouldn’t be easy.
My fatigue has been pretty intense the last month or so. I’ve been exhausted after doing an errand, it’s harder for me to focus, I’m very slow waking up and getting ready in the mornings, and I feel like I’m always behind on something, despite pushing myself.
So I will be having an endoscopy on April 2, 2025, one that I am absolutely not looking forward to. I was freaking out when I first got my estimate for what is only a 20 minute procedure. Over $2,000 including insurance coverage, bringing it down from over $4,000. I guess there are the anesthesiology costs in addition to doctor and other costs for the procedure. My mom graciously offered to come up to Portland from LA for a bit to help me out that week. I was supposed to have it early in March of 2025, but my mom offered to come up to help and she couldn’t come then. I then postponed it to late March of 2025 after my LA trip, but unfortunately returned with a cold. And now it is once again postponed to April 2, 2025.
I can’t tell you how exhausted and angered I’ve been to have to be on the phone with my health insurance and healthcare providers constantly. It is only adding to my fatigue and feels like a giant waste of my time. And overall, this has been an emotional weight. However, I’m hoping for the best and hoping that once I find out what is up with me, I will feel less fatigued and back to being 100%. Maybe it’s IBS and not celiac. I’m so not familiar with GI issues and I’ll find out more. I have my endoscopy and will let you know what they find. I’m stressed and scared for what the future will hold for me. This all feels like part of the “Trump Curse.” However, despite the slowdown this year, I am fortunate to have made some good accomplishments this year already- from getting a commission to having a piece up at Urbanite PDX at Sidetracked Workshop’s Store to having my pieces at an exhibit at the United Nations this Spring. And on top of that, I have another project that I worked on that I will reveal when I’m able to and I also made several art submissions earlier this year for more shows and events :). And my memoir that I’ve been writing had its first art done and the completed rough memoir text is now submitted for edits!