What steps can we take to protect ourselves, to advocate for ourselves, when doctors seem to assume that everything is ‘all in your head’ after you’ve had your diagnosis? Share to show your Support!
I have had issues with pain and vomiting my entire life, but the onset age of regular symptoms was 13. Doctors thought I had many different conditions, but after a battery of tests, I was diagnosed with chronic pain and sent on my way. Pain medicine didn’t usually help, as I couldn’t keep it down, and I hated the way it made me feel when I could. My weight bounced around and I would visit doctors when my health bottomed out completely. I had migraines, muscle spasms, GERD from the consistent vomiting, insomnia from the pain.
I never had continuous access to care to determine whether these symptoms were due to one underlying cause, and no doctor did more than a cursory pass of my medical history before addressing the symptom I had come in for. To be clear – I was operating on the assumption that my rough childhood, coupled with stress, was probably taking its toll on my body, and no doctor did or said anything to disillusion me of that assumption.
I had appendicitis when I was 20, and doctors told me that I may have had chronic inflammation of the appendix, explaining all my symptoms. However, that didn’t explain the pain in my hands and feet, vomiting, stomach upset. I asked the doctors so many questions following that surgery. The doctors said that I would balance back out, things would get better. It seemed like they would, for a bit and then the health problems returned. Since then, I have been on a rollercoaster whose peaks are ok and whose valleys are excruciating.
I am now 26 and I saw two doctors recently. One is General Practitioner and the other is a Psychiatrist. My roommate is a physician assistant and she literally staged an intervention, because all I ever did was sit around, cry and throw up. I had lost 30 pounds in 3 weeks, so I went in for my physical symptoms. Two years ago, I was diagnosed with PTSD. I have not been managing the condition well, as I do not have continuous access to care. I noted this to the GP and asked if he could do a psych recommend before we addressed the issue of my visit. I then told him I was in pain, that I had been vomiting, that I had lost about 10 lbs a week for 3 weeks, and that I had a history of having been hospitalized for similar symptoms before. I told him I didn\’t know what the cause was, but that an anti-emetic would be immensely helpful.
The OTC ones I had been using had stopped working, and I was very worried about the rapid weight loss. That was as far as he let me get before he started typing away on his computer. He refused to give me anything but the psych recommend. I asked him repeatedly for an anti-emetic or a beta blocker (which my prior doctor had prescribed for anxiety-induced vomiting). He refused. When I saw the psychiatrist, he refused to give me anything other than a prescription for duloxetine.
When I got home, I had an emergency call with my therapist and broke down crying. She talked me through the whole situation before I realized what had really happened. My physical symptoms had been completely ignored due to my diagnosis of PTSD. I had to go back in and advocate for myself, or I was only going to get sicker. My therapist told me to try to get in to see a PA because they are more likely to pay attention to medical history. I followed her instructions, and I did finally see someone who would listen.
Read more: Help Yourself Heal
she told me, “You are a very sick 26-year-old. You have a lot of diagnoses with vague symptoms, and it seems like the medication you have been on up to this point may be masking your symptoms.” I cried. Up to this point, I have never had a doctor validate that this has been a lifelong issue for me. She is correct that there are definitely physical issues that need to be taken care of before I can be well, even if the initial cause was psychosomatic. The battery of tests she ordered is already coming back with nutrient deficiencies, as she expected. At the end of the appointment, she apologized and said that she couldn’t really recommend a treatment course until after all of my tests are back, but she was quick to ask if there were any specific symptoms that had been intolerable that she might be able to address. I asked for an anti-emetic, and she prescribed it right away.
So my question is this: How are mentally ill folks like myself supposed to navigate the healthcare system and advocate for ourselves? I am incredibly lucky that I recently moved to California, where I can afford to go to the doctor because of public healthcare provisions. I was legitimately concerned that I would have to be hospitalized before anyone would take me seriously. My roommate even offered to take me to the hospital where they work even though I don’t have insurance that is accepted there.