When I Faced a Doctor's Discrimination Because of My Disabilities
Seven years ago I filed for disability and received it. In many aspects my life continues on as I would have expected. I have my family and friends and I have hobbies. I volunteer. I no longer work, which was a major adjustment. I have many more medical appointments. I take lots of medication. My service dog is my lifeline. There are some activities in which I no longer participate. But I have never felt the shame, hurt and frustration that discrimination arising from disability causes until three weeks ago. And it came from a very unexpected source.
For approximately a year, I had been feeling progressively more tired. Usually an I am active person exercising 30 minutes and walking three miles a day. Then I switched to Hot Yoga three times a week with Cardio three times a week and walking, and eventually decreased to very short daily walk walks. The fatigue stole my ability to exercise. I was constantly exhausted and began napping after volunteering but even sleeping was not ameliorating my fatigue. I checked my eating with a trainer and nutritionist and there were no issues. No home remedies were helping.
Depression could explain part of my fatigue, so I worked with my psychiatrist. There was an element of depression that could account for some of my fatigue and we spent four months resolving that issue with medication and therapy. But the fatigue remained. Emotionally I was feeling happy with my life but I was concerned about the physical fatigue because it was limiting my activities with family and friends. My energy for volunteering was lacking and I was attending fewer days per week.
My psychiatrist and I discussed the next steps to resolving the fatigue dilemma. I had an endocrinologist appointment coming up that could rule out any effects from a pituitary adenoma. If there were no issues at that appointment, I would return to my psychiatrist for a recheck of my meds, discuss my fatigue, check my on my emotional state / lack of depression and then make an appointment with my PCP. My endocrinologist found no extraordinary issues with my pituitary adenoma, but did find a vitamin D deficiency and started me on Vitamin D. I met with my psychiatrist a month later and she suggested I make an appointment with my PCP. Both of us felt like I had done everything to rule out all other conditions and not waste my PCP’s time. After all, I had given a virus time to get better, I had seen my specialists and followed their plans and been cleared by them. It was time to deal with this fatigue.
I called my PCP that afternoon to make an appointment. I felt silly when they asked, “What is this appointment for?” and I replied, “Fatigue.” My PCP was not available for a month, so I took the first available appointment with a doctor two days later. I was really happy to be seen so quickly even though it meant leaving volunteering early. I was nervous about not seeing “my” PCP who had been my husband’s doctor for many years and then became mine as well. I really like and trusted him. But I was willing to give a person from his office a chance. After all, they worked with my doctor.
My first impression was positive. The doctor was personable, made eye contact, asked questions to get to know me and wanted to know about Sam, my service dog. I explained I had been fatigued for about a year. I had stopped exercising six months ago, stopped walking about three months ago and now was having trouble keeping my volunteering schedule despite naps. I shared that sleep was not helping and I woke up tired. I asked her if she could help me because I wanted to get back to exercising and stop napping and waking up tired. This MD gave me hope when she replied, “We will run some basic tests and if nothing shows up, we will go with some more tests until we get results and help you.”
I wanted her to know that I had done my part and had worked with my specialists. I explained my endocrinologist only found a Vitamin D deficiency. I shared with this doctor that I met with my psychiatrist the day before and my psychiatrist agreed that I was not depressed, that my meds were working, and that I should follow through with the plan to see my PCP about the fatigue. She immediately asked for my medication list after hearing about the psychiatrist. Her demeanor changed. It seemed to be less inviting. She listed several tests- anemia, B12 and two others and said she would call with the results by Monday or Tuesday. Then she ended the appointment.
I felt confused as I left the appointment. Was I being overly sensitive? Should I not have mentioned going to my other doctors first to rule things out? Was I wrong to have dealt with my depression? I knew I had to declare my medications. Something was awry, but I could not put my finger on it.
Monday came and there was no call from the doctor. Tuesday came and I waited until 3:00 pm. I knew it would be difficult to reach the doctor herself, so I called medical records to get the results. I was a ball of nerves as I was put on hold. Then a nurse came on the line and got my information. She said, “I will read you the letter the doctor is sending you.” My stomach tightened and a funny feeling took over me. Something was wrong, very wrong. The nurse’s words confirmed it. “The lab tests are in the normal range. I recommend you see your psychiatrist for depression. Thank you, Dr. X.”
Shaking with anger and dismay, yet trying to maintain the appropriate required endings to the conversation, I mumbled, “Thank you. Goodbye,” as I disconnected the call and burst into tears of shame and frustration. This doctor who had told me she would help me had decided I was merely a “psych patient” whose problems were all in her head, and chose not to help me.
I felt the heavy burden of discrimination for the first time. It was shameful and numbing in turns. I was uncertain about what my next step should be because emotionally I was devastated. I was ashamed and did not want to seek advice from family or friends. Then I was numb, and just could not consider even thinking about the situation. I shed many tears of sadness, anger and frustration at various points during that afternoon and evening.
I finally texted my husband and my two closest friends explaining what had transpired. All were aware of my fatigue, my previous appointments with the psychiatrist, endocrinologist and my high expectations for finding a cause for my issue after meeting this seemingly supportive doctor. I texted them the contents of the letter and my short conversation with the nurse. My husband immediately responded that I needed to “see a real doctor and to make a new appointment!” One friend told me “It’s not in your head. I can see the changes and you are not depressed. Find a new doctor.” My second friend put it all into perspective when she said, “You are ill. That is discrimination and you know it. You can fight it. Get a new doctor, get well and deal with it!”
Feeling supported and stronger with the backing of my friends and husband, I picked up my phone and called my doctor’s office. I requested an appointment with my PCP. It was a miracle! He had an opening the next day. I cleared my schedule and took it. I ended the phone call and was immediately anxious. Would my doctor be influenced by the other doctor’s notes? Would I face more discrimination or would I see the wonderful doctor I knew and liked? I decided to be positive and try to get some sleep.
The next day I was nervous as I drove to the appointment. My husband encouraged me to remain calm and to trust our doctor. The check in went smoothly as did the meeting with the nurse. Finally my doctor came in. He read over my chart and asked what brought me in. I replied, “I am completely exhausted. I am not depressed. My psychiatrist has ruled that out. My endo has ruled out problems with my pituitary adenoma. I saw an MD in your office last week who said she would help me. She ran a couple of tests that came back fine. She said to see my psychiatrist. That is not the problem. I would like your help. This has been going on for a year. You know I come in only when things are a problem. I miss my exercise routine.”
My PCP listened carefully. He said, “I will check your vital signs, run some additional blood tests but I think you might have sleep apnea. Has your husband told you that you snore?” I told him “yes,” and I was referred for a sleep study. I met with that doctor, who asked many questions, determined that I was a high risk for sleep apnea and scheduled the sleep study.
The sleep study was done at a hospital. I was wired to an EEG, an EKG, a snore microphone, a band to measure my breathing, and two sensors to measure restless leg syndrome as well as oxygen to my nose. It was intense. I also had to sleep on my back which was uncomfortable since I only sleep on my side. I was worried there would be no results but I went to sleep quickly as I was very tired. I awoke to a nurse telling me that I had met the criteria and I needed to be placed on a CPAP machine because I was not breathing adequately while I was sleeping. I looked at my watch. It was only 12:46 A.M. Finally! Results!
It was not easy facing the discrimination of the first doctor. But with the support of family and friends and knowing that I deserved answers, I persevered. I sought a second opinion and demonstrated that I had done the groundwork, I was not depressed and like any patient, I deserved treatment. In sharing all this, I hope anyone who faces similar obstacles will be empowered to take charge and move forward.
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Thinkstock photo by ESS Graphics.