The Exhaustion of Being a 'Full-Time Patient' Pursuing a Diagnosis


I’ve sometimes heard others in the chronic illness community describe themselves as “professional patients” because simply keeping up with all of their doctor appointments, treatments and health problems in general has become their full-time job. And some might scoff at that idea, especially those who still work despite their chronic conditions. But chronic illness certainly impacts different people differently.

 

I have never considered myself to be a “professional patient;” I prefer to think of myself as a housewife who happens to be chronically ill – although more often than not I think I’m a chronically ill person who happens to be a housewife. Either way, after some new symptoms decided to pop up recently, sending me through the diagnostic process all over again in search of answers, I began to think about why a chronically ill person might consider being a patient to be equivalent to having a job.

I think about people like my husband, who is generally quite healthy. He goes to the doctor once a year for a checkup, and he might go once or twice during the year if he gets the flu or some other bug.  For him a doctor appointment usually means a prescription for antibiotics, and he’ll be back to feeling well within the week.

I, on the other hand, have had more doctor visits in the past year than I can even keep track of. And I generally end up feeling like I’m just a medical mystery. I think many in the chronic illness community can relate, and for those of you who are not, I thought perhaps giving a glimpse into the life of a chronically ill person might help to explain why some consider simply taking care of their health to be their full-time job. And honestly, when you’re exhausted and sick, sometimes it’s really all you can do!

I started trying to tally up the tests I’ve had done since I became chronically ill, and it’s hard to decide a starting point as many of my symptoms showed up when I was a kid. But, I’ll use seven years ago as a starting point, as it seemed like the beginning of some of the more serious, or at least more constant, health problems I’ve had.

To the best I can remember, I’ve had:

  • Five EKGs
  • Five vaginal ultrasounds
  • Four sets of chest x-rays
  • Two ultrasounds of my abdomen
  • Two sets of back x-rays
  • Two MRIs
  • Two CAT scans
  • Two endoscopies
  • Two ER visits
  • One ultrasound of my leg
  • One colonoscopy
  • One surgery to have my gallbladder removed
  • One 24-hour halter monitor
  • Several rounds of physical therapy
  • And more blood tests than I can count!

And I’m sure there are more tests that belong on the list, but that’s all I can remember.

I can’t begin to count how many doctor visits I’ve had during this time. But I’ve been tallying up doctors and I’ve developed quite a list!

I’ve seen a:

  • Primary care doctor (and actually ended up switching doctors twice during this time)
  • Surgeon
  • Rheumatologist
  • OB/GYN
  • Fertility specialist (who deals with polycystic ovary syndrome and endometriosis)
  • Gastroenterologist
  • Neurosurgeon
  • Cardiologist
  • Endocrinologist

Within the last three weeks, I’ve had three doctor appointments, two sets of blood work, an EKG, chest x-rays and a halter monitor. This is certainly not my normal schedule (at one point I only had to follow up with my various doctors every few months). However, every time new symptoms emerge it can lead to new doctors, more tests and lots more waiting.

Although I wouldn’t really qualify myself as a professional patient, I think it can be hard for some to understand just how much time and limited energy we often have to spend at doctor appointments or on getting various tests done.

Over the past seven years, I’ve been through so many tests, so many appointments and spent so much time searching for answers. Sometimes I feel I’m just stacking up a list of diagnoses, but I need to figure out what is going on before I can decide how to treat it. Being chronically sick is downright exhausting! And maybe after further consideration I should really say I am quite the professional patient and medical researcher!

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Thinkstock photo via berdsigns.


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