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I’ve been wanting to write an article on the overall invalidation of chronic illness patients for quite awhile, yet in considering this prospect, I was overwhelmed with reservations.
What if sharing my own story results in even more hurtful commentary, assumption, or degradation in some way? What if I go to this emotional place that has become very sensitive for me, and I can’t get back out? It was this final question I asked myself that reminded me exactly why I NEED to go to this place. The "opioid crisis" is also severely affecting our quality of care, and now is the time to speak up.
Over the years, I have made countless friends with chronic illness patients who have also had to put up with the long-term damage of our society’s medical system. This includes not only select doctors, but pharmaceutical companies, the FDA, and the CDC as well. The issues at hand shouldn’t be ignored. If we are being this commonly and this badly traumatized by doctors, something needs to change. And that’s why I want to share a bit of my story.
Just over seven years ago was when the majority of my symptoms began. And, like many, it took me nearly a decade to get the majority of my diagnoses. Many doctors and people in general don’t understand that it can take decades to get answers, and are very quick to dismiss patients who initially have negative test results. Fun fact: it happens to women much more than men, both due to a slew of hormonal conditions, and because we are less likely to be believed (commonly perceived as "dramatic").
Over the course of these seven years, I have seen hundreds, and I wouldn’t be surprised if it’s been nearly one thousand specialists. I’ve been in severe pain with debilitating fatigue that has truly affected my daily functioning. I’ve built up the strength to push through even though many a time, I don’t feel able to anymore. And these are some of the heartless and beyond ignorant experiences I’ve had as well as comments I’ve received, even after working hard for years to get my very positive test results (of Lyme and its co-infections, POTS, EDS, small fiber neuropathy, intracranial hypertension, interstitial cystitis, and more).
I’ve had a doctor in the hospital tell me that he didn’t believe I was in pain. That my conditions “don’t cause pain.”
I’ve been repeatedly labeled a “drug seeker” simply for looking for anything to help the pain all over my body that keeps me awake at night.
I had several pain management doctors automatically dismiss me without even speaking with me first. The conversation went a bit like,
Me: *in tears* You helped my friend who referred me, and she has some of the same conditions as me. You haven’t even spoken to me!
Doctor: “I don’t have to justify my actions.” *walks out*
When I finally attempted suicide due to a variety of different prolonged stressors, I had a primary care doctor go, “none of your pathology 'holds water' anymore because you have some kind of emotional abnormality” (yeah, PTSD from people like you).
When I’ve gotten upset with the blatant invalidation, I’ve had many doctors blame my feelings on several mental disorders. “Go see a psychiatrist,” is a common “suggestion” for many with chronic illness. Not because of the emotional toll it takes, but because they think you’re crazy or it’s a mental issue.
I had a nurse “tell on me” for asking for medication. I got in trouble for asking for medication to help my pain.
“I see you walking around. You don’t look like you’re in pain,” said a doctor.
I’ve had mental illness used against me to tear me down.
I’ve endured the long-term effects of harmful medications that were mindlessly thrown at me. I’ve had several procedures gone terribly wrong.
My worst experience yet was this year, where I was one hundred percent neglected in a hospital setting. Due to the severe pain I experience daily, I had been on Percocet for a year. When I was hospitalized after my first suicide attempt, it was taken away from me cold turkey (it was not my “method of choice,” might I add, so there was no viable reason for these actions. My physical illnesses and the high tolerance/dependence I had built up over time, were not considered). “We’re trying to get you better,” they said, assuming I was just an addict and without even talking to me first. So not only was I coping with heavy emotional stress due to the trauma that admitted me, but also my textbook full of physical illness/pain and severe opioid withdrawals. I was forced through them, and the only thing considered to give to me was “klonopin, because it’s proven to show great results with anxiety!” My inability to control my mental distress at this point as a result of the utter torture my body and mind we’re going through, was ignored and written off as “just anxious.” I suffered for two days no sleep, no food, curled up in a chair shivering, sweating, and crying hysterically. They refused to call the on-call physician. The following day, a nurse practitioner came in. She noticed and actually cared how terribly sick I was, and quickly ordered my prescription. A few moments later, a doctor finally came in. “Ah. I see you’re on Percocet,” he said with a smirk. He said nothing else. I found out thirty minutes later that he had canceled the order on assumption. Livid, and emotionally and physically drained, I managed to use all of the strength I had left to get myself a TDO, otherwise known as a temporary detainment order, just to leave the horrible situation "unadvised." I’m terrified to go back to a hospital.
Unfortunately, this is only a small portion of how the medical field has treated me, and I know that I’m not alone. I have witnessed friends also being denied medication. Being neglected, and verbally, emotionally, and psychologically abused by doctors. And that’s not all. I used to want to be a doctor. My own illnesses and the way that I and people I know have been treated is what made me want to go into medicine — to make sure it doesn’t keep happening to others, and to be one of those very rare doctors that truly wants to help. But it’s also made me terrified of dealing with the system at all, to any degree.
As chronic illness patients, it’s our job to stand up for our health. It is our duty to do our own research, so we can help to advocate for ourselves, and so we can stand up to as well as work with our doctors. Sometimes it HAS to be our job to put some of the pieces together, and that’s often what happens. It’s imperative for us to be knowledgeable, so we know when we’re not being treated properly. It’s our job to make sure we don’t tolerate being patronized, and that we don’t let the invalidation get us down. The medical field has a long way to go in many ways, but we don’t have to tolerate its indecency.