I have been in treatment for mental illness for seventeen years. When I first started taking medication for depression, I had side effects that were severely affecting my life, and the medicine was not making the depression all that much better. We went through many different medications, but my treatment mainly consisted of arguments with psychologists who did not believe I was experiencing the side effects I was reporting.
After many years of this pattern, I sat with yet another psychiatrist who wanted to try a new medication. The doctor told my husband that he should take the information packet about the medication and not let me see it. The doctor felt I was making up side effects —in fact, he felt that I only believed I was experiencing side effects because I’d read about them in the insert. So, if I had any “perceived” side effects, I was to tell my husband and he was to decide whether or not they were real.
It is a myth that those of us with mental illness cannot accurately self report what is going on with our own bodies. I do not make up rashes, bleeding, extreme stomach distress, weight gain, facial ticks, or muscle spasms. Those are actually just a few of the many side effects I have experienced from taking medications ranging from SSRIs, to anti-anxiety medications, to atypical antipsychotics.
I’ve lost count of the number of psychiatrists who have said I was making up side effects. Fortunately, I finally went to one who said that there is a significant number of people who are more sensitive to medications than others. Plus, if you have another condition, like Irritable Bowel Syndrome (which I have), you are far more likely to get complications from any medication. Thankfully, that doctor knew to always start me on about a quarter of the dose that would be normal for most people. We still found that there are very few medications I can take without getting sick.
Oddly enough, while many psychiatrists believed my mental illness was so bad that I could not accurately report what was happening to me, my general practitioner believed that I was inaccurately reporting that I had a mental illness! Every time he saw me, he’d ask me whether I really had one. So I was dealing with many doctors who did not believe I could trust my intuition as to what was happening to any part of my body.
It has only been within the last three years that I’ve decided that, no matter how much I respect doctors (and my Dad is one), I would not let a doctor tell me that my experience was wrong. If one doctor did not believe me, I would find another doctor. I would not take any medications or have any procedures done that were not adequately explained to me. I began to insist that all of my questions be answered honestly and with care. I only have one life, one body, and one mind, and I cannot let someone else take control of any of it. I have to be my own advocate.
This decision was scary at first. At times, it means I do not get the treatment I need because either I cannot find a good doctor or the good doctors do not take my insurance. I also know that not everyone can take this stance because our medical system is severely damaged, especially for people with low incomes and less access to good medical care.
But I have found many great doctors who are kind and trust their patients. As time has gone on, it has been easier for me to know what questions to ask doctors who are covered by insurance so that I know who might be a good fit.
I will not always get the luxury of having options with my medical care, but I can always practice asking for what I need and asking for my report of what is going on to be taken seriously. It may not always work, but there is a change, within myself, every time I advocate for myself. I learn to trust my intuition even more. I learn to see my self-worth and honesty, even when a person in power insists I am inadequate.
This practice is essential, I believe, to our recovery from mental illness. We need to know that we have worth, that we have choices, and that we can make good decisions. Even if a doctor, family member, or friend insists that what we are saying about our own bodies is not true, we do not have to believe them. The only way we exercise self-care is to learn to trust our intuition about our own bodies, whether or not other people believe us.
[Headline image: The photograph features a solemn person with long black hair and a gray sweater, resting their head on their arms. ]