Navigating Chronic Illness: The Patient’s Perspective

The forest speaks to my soul in a language I already know; a distant lullaby from the womb of peace and solitude.

-Angie Weiland- Crosby

I am literally addicted to forest bathing. While the ability to forest bathe in the winter does create challenges there is a way around most of them. We will discuss ways to combat the winter blues in a future post. We will also talk about how to maintain the healing momentum we all feel more powerfully in the summer.

But today I want to focus on doctor appointments. What’s the big deal about doctor appointments? Anyone with chronic pain/ illness knows. Let me explain the realities of chronic pain and medicine. This is for those who have not had to fight to get care.

The relationship between doctor and patient is supposed to come to a successful resolution. Diagnosis. Or death. The tricky nature of the chronically ill patient and their doctor is an uncomfortable one. There is no resolution or death. There is no treatment plan or hope for the future. It is hard for many people to wrap their brain around. Surely there is a surgery to be performed. A trial drug to be prescribed. If nothing else there must be the greatest of emotional supports. Not so.

Our world is set up to have an answer for everything. Just ask google. Or Siri. But not all doctors know all medical conditions. And some conditions don’t resolve.

I read this the other day: Having a chronic illness is like having severely bad eyesight and needing glasses. Except glasses don’t exist. Most people don’t believe you have bad eyesight. You get judged for not being able to see correctly, people think you are faking for attention. People tell you all the time they wish they had your bad eyesight so they could get out of certain obligations. You cannot go to work because you cannot see. You cannot read a page in front of your face, doctors say you are just depressed. Everyone around you tells you to try harder to see. Lots of people tell you to do yoga.

There are healthy people that are under the impression that chronic illness sufferers have a free ride. We “get to” stay home all day. And we get access to all the equipment and therapies needed for our condition. That is, sadly, just not true.

The pains I’ve had to go to get supports is almost too much. It is painful to think. Painful to fill out a form. Painful to sit in a waiting room to talk to someone about it. Painful to have them dismiss me and suggest I seek counseling.

Our medical system is more overloaded than before 2020. Still, these issues I am experiencing were a problem long before that. There is a lot of waiting in the medical system. At any given time, I am either waiting to see a doctor. I am waiting to hear back from a specialist. I could be waiting for a prescription to start working. Waiting on a cure. Or I’m waiting on a medical test that probably won’t show anything anyway!

Or my go-to move. Waiting in the walk in for hours because I forgot to book with my doctor before my meds ran out. Again!

This graphic from MyBodyIsTryingToKillMe.com could not be more accurate. When you’ve experienced medical gaslighting the time periods before, during and after appointments are even more anxiety triggering.

If you haven’t heard of gaslighting, allow me to catch you up. Gaslighting involves using psychological manipulation. This manipulation aims to undermine a person’s faith in their own judgment, memory, or sanity. In medical gaslighting it can look like being dismissed in your concerns or questions. Disregarding or minimizing your pain or other symptoms. When medical professionals try to pass off your musculoskeletal pain as something that is just in your head. Being stereotyped for gender, race or condition. Being shamed for attempting to self diagnose (have you seen that smirk?). Refusing to order lab work, imaging or a referral.

How many of these have you experienced? Comment below with your story.

Pre appointment jitters start coming up for me the day before. Or a week before, depending on how much I need this doctor to hear me. I have spent hours making notes, writing down questions and praying this doctor would hear me. And take me seriously.

It is demoralizing to be told you need to do more. You are simply waiting to be told what to do that will not make symptoms worse.

During an appointment I have been told nothing is wrong. That I just need to do more physio. That I won’t get better if I don’t get off the couch. This is the tip of the iceberg. It is demoralizing to be told you need to do more when you are simply wanting to be told what to do. In each diagnosis there is an attempt to create pain. Like getting your car engine to do the weird thing it does for the mechanic. But my issue was in “the wiring”. It would hide from doctors. Then it would show up as searing pain the following day. When they didn’t see it, it was hard to convince anyone it existed.

Post appointment always left me feeling let down. Major depression. I would have so much hope that this would be the answer. Only to be told there was nothing they could do. After the worst appointments, I would start looking for a new doctor. This added a fresh layer of stress to the pile. Then there is the drain circling doubt. I would question my thoughts. My symptoms. My pain. Is it all in my head?

I don’t access the medical system for many things anymore. There is so much more pain there. I use it for what it can offer and the rest I get from nature.

I am grateful for what I now know. Because the effects of medical gaslighting in my life were starting to take their toll. It has contributed to my ongoing depression and anxiety. It has given me a mistrust of doctors and specialists. Though my mistrust in myself has been the greatest weight. I have hesitated to seek care for myself and my family in other areas because of my experience. That has not always led to the best outcome.

While this is all very frustrating it is wonderful to know there are others out there. I am not the only one. So here I lend my voice to tell you that you are not the only one. I share these wildly accurate and humorous thoughts from Nia @chronicnotebook to end on.

You are a forest and no matter how many wildfires burn you down you’ll always find a way to grow back.

C.S. Lewis