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How Long Wait Times for Doctor's Appointments Harm Me — and Other Patients

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Editor's Note

This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

Lying in my bed in the dark, I shake uncontrollably, I sweat, nauseated, bloated, and sore. No, I’m not experiencing withdrawals, but I don’t know what’s going on with my health. While I have my suspicions, I have no official diagnosis because I’ve been waiting for my doctor’s appointment since October 2021. It is now February 2022, and I still have a month to go before my appointment. All I know is that when I eat anything, my stomach swells up and is hard to the touch, and I’m unable to eat much. At this point, I’m worried I’ll start feeling the effects of malnutrition before I have my appointment.

As a person with chronic pain, I’m used to counting down the days until doctor’s appointments. I have endometriosis, which takes an average of eight years to be diagnosed. I fell right in with that timeline, going to the doctor for stomach pain and cramping in middle school and not receiving my official diagnosis until I was in my second-to-last semester of college. A major reason that endometriosis takes so long to diagnose is that it is often seen as a “women’s disease” or “just a bad period,” and the inherent misogyny in the medical field often dismisses those who are assigned female at birth when they bring concerns to their doctors. 

Endometriosis is defined as “a condition where tissue similar to the lining of the uterus (the endometrial stroma and glands, which should only be located inside the uterus) is found elsewhere in the body.” It is often an incredibly painful condition that can impact day-to-day life and has no cure. However, after living with this diagnosis for about five years, I’ve been able to find great doctors who listen to my concerns and work on health plans with me. My current health plan includes laparoscopic surgery to remove lesions, which is a surgery recommended by most endometriosis experts. I have had to undergo this surgery twice. While I have had good insurance that covered my surgeries, others haven’t been as lucky, and their endometriosis may worsen.

A common symptom of endometriosis is known as “endo belly,” where the stomach of those who have endometriosis can bloat to an uncomfortable level, making the patient look “swollen.” Since this was a symptom that came up occasionally when I ate or drank certain things, I went to an emergency doctor’s appointment in August of 2021. While I had a doctor’s appointment in October, my swelling was more frequent and my diet didn’t seem to matter, so I asked the office for a scan and to see the first available doctor. Everyone I’ve interacted with at this office has been wonderful, so going into this appointment, I wasn’t overly worried. I even cracked jokes with the technician who did my ultrasound.

The doctor on call looked at my scans and reassured me that no more tissue or lesions had grown since my laparoscopic surgery but agreed that my stomach swelling was concerning. He reduced some of my daily medication and told me to follow up with my primary doctor during the appointment we had in October. When I left the doctor’s office in August, I wasn’t eating as much as I needed to. When I was able to see my primary doctor in October, it was less than before. He referred me to a gastrointestinal specialist, who I immediately called. Their first available appointment was in March, but they would keep my name on the waitlist in case anyone canceled an appointment, and they would call me right away. That call never came, though.

I wish I could say I am currently in limbo, but that would imply I’m in the same state I was in at the start of this journey. In fact, my health is declining. Tonight, the sweating, the shaking, nausea, and of course, the bloating weren’t even from a meal I had today. It was last night’s dinner. The culprit? Roasted carrots and chicken tenders — a meal apparently so dangerous that I actually had to call out of work so I could lie in bed, passing in and out of consciousness. Most days I live off Gatorade and crackers and have a small late-night meal of leftovers. So if I finally have doctors who care about me and listen to my concerns, why am I struggling while I wait months for an introductory appointment with a specialist?

The pandemic has exposed many weaknesses in our society that were already present but were ignored. In 2017, the average wait time for a doctor’s appointment in metropolitan areas was 24 days. Waiting three weeks to see a doctor is already concerning, as early detection for conditions and diseases can stop certain conditions in their tracks. Waiting months to see a doctor could be fatal. It’s no secret that hospitals and doctors’ offices are flooded with COVID-19 patients and those who have long COVID-19 and that healthcare professionals are burnt out. Losing so many healthcare professionals because of the stress of the pandemic — or even to COVID-19 itself — requires the remaining healthcare professionals to pick up what they were already struggling to carry. This is on top of the fact that fewer people were entering the medical profession before the pandemic. Who wants to go to school for years longer than their peers with mountains of student debt and no guarantee of a residency during a pandemic that has killed millions of people?

And it’s not just physical health that is falling through the cracks. The Association for Behavioral Healthcare just released a report on Massachusetts that found that “for every 10 master’s-degree-level mental health clinicians hired, 13 similarly qualified clinicians left their positions in 2021.” An argument against universal healthcare is that Americans will wait longer to see the doctors, thus making their illnesses worse. I would argue that we’ve already reached that point, and Americans are struggling to pay for the doctor’s appointments that they are lucky enough to have.

My suspicion is that I have small intestinal bacterial overgrowth (SIBO), where an increase in gut bacteria can slow the proper digestion of food. My primary doctor agrees that it is most likely SIBO or something similar that affects gut health, but he needed to refer me to a gastrointestinal specialist. SIBO requires a breath test to be diagnosed, and the treatment is typically antibiotics, which doctors are often in no hurry to give out without a firm diagnosis. There is nothing wrong with my doctor wanting me to see an expert so that I can receive the best quality of care, however while waiting for that care I feel weaker every day and may be doing irreversible damage to my body.

Our current healthcare system fails everyone — patients and providers alike. We need to break down the barriers for new providers to enter the medical field in higher education. We need to support the healthcare providers who have been struggling through the pandemic financially and mentally. We need to create an environment that makes patients feel comfortable enough to go to the doctor and prevents doctors from dismissing their concerns because of bias. Finally, we need to make going to the doctor more affordable so that when we do manage to see our healthcare providers, we can afford the treatment that we need. I don’t know how to accomplish all of these goals, and I know that it will not be a fast or easy road, but I do know that all of these goals need to be accomplished. I am one of countless patients counting down the days until their appointment with no guarantee of an answer when we walk into the office. We cannot keep waiting.

Originally published: April 21, 2022
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