After the “presidential” inauguration, I entered a wave of anxiety and despair. My training suffered, I questioned whether I should even still do the PCT at all. The self doubt which had slowly been disintegrating because my training was going well, came back rearing its ugly head full force. My body hurt, my chest hurt, I wasn’t breathing well. The stress was manifesting itself in my body.
A lifetime of medical PTSD and gaslighting by almost every doctor I saw, my parents, teachers and coaches who told me that I was only in pain because I was an athlete and to “suck it up” has left me with a very large reserve of skepticism toward the medical community, who by and large don’t understand the complexities or treatment approaches for hypermobility/Ehlers Danlos and the devastating consequences of failing to provide proper care. It’s not even necessarily a serious condition on it’s own, but being given the wrong medications or physical therapy approaches can have potentially fatal outcomes, or at the very minimum, can have incredibly adverse outcomes for quality of life.
Anyway, being told over and over again that your concerns aren’t real and there’s nothing wrong with you when there actually is, is still a fear that lingers for me. Every ache and pain, every stomach ache, every headache, in the back of my mind is something that’s a potential issue that doctors won’t catch, and so I have to remain vigilant and educate myself about the vast constellation of symptoms that exist at the periphery of my own syndrome. For a long time, I was the only one who understood anything about my body, and even then, I questioned my own reality. I now have an amazing medical team who have earned my trust, but that feeling of unease still remains.
A few weeks ago, I started having really tender breasts and decided to go for a breast exam since I hadn’t had them checked in maybe even years at this point. Admittedly, being a heterosexual woman, I don’t have much experience feeling up boobs and have no idea what I’m looking for. What is a lump and what is just a boob? I don’t know.
My doctor was poking around and told me she didn’t feel any lumps. She then started pressing where I had complained of them being tender in my side boob region. She said that that area wasn’t even breast tissue – it was my pecs. It then occurred to me that it might just be sore from my backpack straps. I had just exchanged my backpack for a bigger size because the torso was too small, and even if it wasn’t that, I had been training hiking miles with a 30lb backpack as many days in a row that I could. I felt like a total paranoid idiot because none of that ever crossed my mind as an explanation.
While she was doing the breast exam, she asked me about some small red dots all over my stomach. She said she wasn’t sure what they were, but to have a dermatologist look at them. I googled “small red dots on stomach” and the results indicated endocarditis, leukemia, or nothing serious at all. Part of me panicked, I made a dermatology appointment for the next day, which I wanted to do anyway to have my skin checked before heading out for a 6 month walk in the sun. The dermatologist gave me some samples of lotion that would help with dry skin in the desert and said the dots weren’t anything serious. It occurred to me later that those dots were likely skin irritation from my backpack waist strap.
There was nothing wrong with me at all. Physically, anyway.
Doctors love to throw around this saying “if you hear hoofs, think horse, not zebra”, meaning, don’t automatically assume that someone has a rare disease based on their symptoms, because it’s probably something common. Yes, statistically, that is good advice. But it still allows a lot of patients to fall through the cracks, sometimes even for decades, and I’ve been one of those patients. One of the unfortunate side effects of being hypermobile is that I now completely bypass any rational, logical, common explanation for my ailments and jump straight to something more obscure and undertreated, because for me, historically, it has been.
This may be one of the most challenging things I have yet to overcome. Even though, over the last 5 months, I have physically been able to challenge myself more than I have in a long time, and I keep doing things I thought I might not ever be able to do again, there is still part of me that doesn’t fully believe how strong my body is, that I am actually now healthy, that since my neck surgery a year and a half ago, that I’m doing pretty freaking great.
My hope is that on the trail, these doubts will fully disappear, because only a truly healthy and strong person could do what I am about to do, and what I have been doing now for the last 5 months.
If you are enjoying this blog you can subscribe here to get email updates! If you are really enjoying the blog, please buy me a coffee and help me on my PCT journey! ☀️
Leave a Reply