My Life Has Changed Drastically Over This Year

A weekly schedule that is filled with medical appointments.

I am someone who is chronically ill. I’ve been this way since I was a child. I can vividly remember having mono at age eight, an abdominal hernia around that same time, being sick and having to leave school constantly.

Throughout my life I have always been sick in situations, despite my best efforts and attempts to boost my immune system. While those around me constantly ask me questions, or make statements that feel really minimizing or demeaning, like “Patrick, you’re always sick” or “Oh my god, you’re sick again” or “You looked fine yesterday.”

Since slowing my life down because of the intense Autistic burnout that I created by not only just existing as an AuDHD human in this world but also as an entrepreneur who has pushed himself so far beyond his limits and his capacity that it’s left him unable to get off the couch most days, unable to function otherwise; I’ve realized that I’ve been suppressing, masking, or numbing my physical health symptoms and struggles.

Now that my nervous system has tried to regulate itself in a container that is a little bit more intentional and more slowly focused to support myself through burnout, it’s like this physical, chronic illness cluster has hit me like a fucking tidal wave.

The diagnoses have piled up over the years. Between having a rare throat condition that only impacts 0.001% of the population, which has already required two surgeries paralyzing my vocal cord permanently and forever changing my voice. I’ve also been dealing with chronic GI issues and urinary issues since I was a child. I have experienced physical pain that I can’t even often describe to medical professionals because it is so intense, so palpable, that I don’t know how to explain it because I don’t know how people don’t go through their lives experiencing the things that I do.

As someone with hypermobility Ehlers-Danlos, I often can feel electrifying pain in the ligaments in my joints, in my tendons, even in my fucking blood vessels. I can feel my body not working properly alongside the dysautonomia that has been created. I can feel the mast cell activation syndrome overexerting itself, and sending out more cells to protect a body from a threat that is constantly perceived, that may or may not actually be there, constantly scanning for threat like the eye of Sauron looking for the one ring.

Then on top of this, heightened markers for certain types of cancer that have come back that are concerning, and mycotoxin poisoning that I’ve probably been dealing with for years of my life.

Brain fog, confusion, chronic pain, chronic exhaustion, severe heat intolerance. The list goes on and fucking on.

Over these last two weeks alone I have had the following doctor’s appointments on my schedule, making it feel like my full-time job is to go to specialist appointments and to be given different advice, to be put on new medications, supplements, testing, procedures, all to lead back to square one: a baffled doctor who throws up their hands, unsure of how to help.

These last two weeks have looked like:

• Me going to three physical therapy appointments to support my hEDS

• Two mental health therapy appointments

• Two urgent care visits for bizarre abnormal medical experiences that cannot be explained.

• Having an EKG of my heart done

• A cardiologist appointment

• An echocardiogram

• An ultrasound of my upper quadrant of my body

• An internal radiation appointment for pelvic venous insufficiency system

• An orthopedic appointment for a torn thumb ligament, which needed a cortisone shot directly into the joint

And now my primary care physician wants me to establish care with a functional medicine physician because she no longer feels like Western medicine has the answers. I agree. I don’t think Western medicine is designed to really truly support people with these interconnected complex illnesses that leave most medical professionals scratching their heads or asking you, “Have you tried mindfulness or meditation to reduce your stress and anxiety?”

All of this shit is fucking expensive. I am draining my savings on trying to stay healthy and alive and to try to figure out answers.

Those of us who experience chronic illnesses often have to also navigate:

• trying to hold down employment

• running a business

• having any semblance of a social life

• trying to stay present in a relationship

• other hobbies and activities outside of being our own patient advocates

• dealing with different medical appointments all over town

• spending energy trying to educate our providers because they don’t have the answers

• trying new supplements or medications and dealing with the side effects

It is a full-time fucking job that we are not getting paid for.

It’s exhausting and the interconnectedness of everything that I’m talking about often impacts Autistic and ADHD people in higher amounts than it does for neurotypical people. Yet our medical system, especially in the Western part of the world, is not designed to see a holistic picture. It’s fragmented and disjointed into specialists’ silos, with different amounts of co-pays, most of whom don’t even take health insurance and charge astronomical amounts of money out of pocket.

It is a privilege to be able to afford all of this and still be able to survive but that doesn’t mean that it is any less demoralizing, exhausting, isolating, or overwhelming.

To those of you navigating complex chronic health conditions that the medical system often does not have answers to. My heart goes out to you. I know how much it fucking sucks. I know how much you want to give up and I just encourage you to keep fighting. You deserve to feel healthy; you deserve to feel seen and I know there are an enormous amount of obstacles and barriers in the way.

Until Next Time,

Patrick