(Disclaimer: I am not a doctor and none of this is meant to provide medical advice. This is just my personal experience.)
I struggle with being my own patient advocate and not being a hypochondriac. I know that having OCD means that I have a tendency to catastrophize and this includes imagining worst-case possible illnesses or medical situations. I know when I’m at my most mentally ill that I can see an aneurysm instead of a migraine or some other catastrophic illness in a simple flu or cold.
I can’t count the number of times I’ve told people to bend their neck down when they have a fever to check for meningitis. Is that helpful or paranoid? Sometimes it’s one of them and sometimes it’s both. I don’t always have a good sensor for that kind of thing.
I had to ban myself from WebMD long ago because it would make me worry and worry. I learned at a young age that every symptom leads back to cancer no matter how innocuous. So mental health means avoiding WebMD.
I also didn’t want to be that patient googling my symptoms and telling doctors and nurses what I think I have.
However, at the same time, I have a long history of being dismissed by the medical establishment when I don’t feel well because of my history of scoliosis surgery. If something hurts or bothers me it’s because of my back.
For example, my knee hurts and I have IT band issues: it’s because I’m overusing my knees because I can’t bend my back. Or: I have chest and side pains: it must be referred pain from my back.
Part of why this kind of dismissal is problematic is that that is usually the end of the discussion. I still have issues and difficulties, but the issue is medically “solved.” The same with the back pain that I have had since the surgeries. The orthopedic surgeons did their job (quite admirably!) sent me to a few weeks of PT and then told me to have a nice life. They didn’t tell me anything about how to do that or how to manage the pain, limitations, and struggles that I would have my whole life.
I don’t believe that this is the job of orthopedic surgeons but I do believe that a holistic medical practice is sorely lacking in this country and in the face of that gap I’ve had to go out and be my own advocate and health care manager.
In the absence of any pain management, I’ve had to explore chiropractic care, acupuncture, massage therapy, different types of physical therapy and various types of exercise on my own with no larger guidance. I’ve had to piece together how to feel better with the various options out there. I’ve struggled and failed and suffered in my experimentation. I’ve also spent a lot of money trying to figure out what to do. I’ve fallen for the promise of different treatments and methods that failed me or made things even worse. I’ve struggled to get referrals for different treatment and to be taken seriously.
And that doesn’t just include my back problems and the whole-body systemic issues that stem from them. It includes mental health issues that are inextricably tied to my physical issues and how to treat them.
And of course, it also raises the issue of new problems. Like I described before, often my new issues that aren’t as simple as UTIs (which was an exception to the rule against WebMD) and I struggle to get answers. Or even tests. I’ve been feeling terrible for so long but a lot of it was explained as fatigue or low energy from back pain or anxiety.
I finally found a primary care practitioner who listened and ordered many blood tests which led me to my super low iron levels and getting iron treatments. I’m so beyond grateful when I’m taken seriously and helped like this. It would be so easy for her to have ignored or dismissed me, instead, she referred me out to specialists and kept testing.
And I have faith that she’ll keep looking for solutions for me—she doesn’t treat me as a hypochondriac when I ask for tests that explain why my first results demonstrated high levels of inflammation or when I asked for answers for why I feel symptoms that other doctors labeled “vague” like night sweats, fatigue, hair loss, etc. She could easily have made me feel like a nuisance who spent too much time googling my symptoms but she respected that I needed more information to understand my own health and how I can feel better.
I respect that doctors and nurses have expertise I do not, but I know my body very well, and I need more answers and understanding than I often get in a ten-minute specialist or PCP visit. I read up on studies on alternate and complementary treatments to traditional pain meds or doing nothing (the two responses I’ve often gotten).
My reading helps me better understand hormones, vitamins, and how medicines affect different people. There’s so much that patients aren’t told about their medications and conditions. It’s on me to do this research and understand my particular body and mind and that does not make me a hypochondriac even when I fear that I may come across as one. But by now I know when I’m being alarmist and when I taking care of myself in the absence of holistic health care.
If I didn’t explore and experiment on my own I would never have come across many of the treatments that help me and even problems like very low iron. It was only in reading about medications to treat mental illnesses that I learned that melatonin for sleep comes in sustained release format which makes a huge difference for insomniacs like me who not only have trouble falling asleep but also staying asleep. I’m not sure where else I would have learned that. So thank goodness for the books, articles, and the well informed parts of the internet for connecting me with the information I need to have better health.