I’m trying to talk myself out of a panic attack sitting outside the general practitioner’s office like a naughty student at the headmaster’s office. I’m waiting for the paperwork for a transfer to hospital and I am, of course, very scared. There are two ways that my appointments usually go: the younger doctors tend to look a bit panicked, the older ones get that “heart sink” look.
If you aren’t familiar with the phrase “heartsink patient,” it’s a rather derogatory term for patients who are seen as a pain in the backside and you get that “heart sink” feeling when they enter the office. If you Google it you will find stories of doctors who have these patients who waste their time with their (probably fictitious) idiopathic pain. These patients are never “happy,” never get better, just keep coming back! But before you feel sorry for those overworked GPs and their difficult workload, listen to the other side of the desk.
The doctor I saw was less experienced, and she started to look panicked as I outlined my worrying symptoms and history. By the time I was finished she has physically moved back from me, like I was an un-exploded firework that may go off at anytime. The obvious choice, of course, was the hospital, because they’ll know what to do. She is of course making the right decision — anyone this medically complex needs investigation.
I want to make something absolutely clear, this next point is vitally important, ao please take it in and digest: I don’t want to go to the doctors and I’m terrified of the hospital. No, I’m not bored, lonely, slacking off something, or looking for attention. The only reason I would consider going to the hospital is if I believe my life is in danger. Four times the hospital sent me home on the verge of heart failure, twice they sent me home with acute pancreatitis (it will kill you if not treated), four times they sent me home saying it was impossible for my condition to have progressed the way I was claiming (which it had and it was potentially fatal) five hours I sat in A&E before anyone noticed that I was slowly bleeding to death. Every time I was treated like I was a time waster, attention seeker, told that I needed to get serious psychiatric help or that I didn’t love my kids and wanted to get away from them. That is abuse, it is gaslighting, belittling behavior dealt out by someone in complete control of your life.
One night I was in agony all night with pancreatitis and the nurses withheld painkillers for hours and then made fun of the way I was acting “looks like she’s about to give birth!” The hospital is not a fun day out for me, it is somewhere I have nearly died several times and a lot of the time, not in the best care. Not that I’m saying all doctors and nurses are like that, not at all. I used to sit on that side of the desk — they’re just people, people who set out wanting to help other, people who under the right circumstances easily slip into institutional abuse. People who label patients as “heartsink” or “frequent flyers” and don’t see them as fellow humans anymore, just a problem to be passed on as soon as possible.
On a normal day I wake up exhausted and in pain, having had little sleep, because it feels like my mattress is full of rocks. It’s not of course, in fact it’s a relatively new and not cheap mattress, but everything hurts all the time. After several complicated conditions my body has had enough and rebelled, and now I have chronic pain and fatigue. That’s how you become a “heartsink” patient, you survive. Maybe you get through one particularly traumatic accident, or an all-too-close health scare, you pick yourself up and dust yourself off. The doctors involved in saving you get a well-deserved pat on the back. Perhaps you are even interesting enough to get a case study written about you and all the student doctors want to talk to you because you are such an interesting specimen. You take yourself back to work, whatever your daily routine looked like before and you are happy to be alive. You are a success story!
Then, a few month or a year later something else happens. You nearly lose your life again. It takes that bit longer to get back on your feet and you don’t feel able to do quite what you did before, there are complications. After two close calls where you were fobbed off as “over-anxious” you become a self-fulfilling prophecy, becoming anxious about health concerns, about every time you need to see a health care professional. You end up sitting outside the doctor’s office trying to talk yourself out of a panic attack, because you know once you panic, or start to cry, you might lose all respect from the doctor and become a problem no one wants. An over-anxious, crying, hysterical woman with a complicated medical history.
So why do I keep going back to the doctor with constant complaints of fatigue and pain and other conditions that never get better? Well, because I remain, as a fellow person with chronic illness said to me, “defiantly alive.”
This blog was originally published on 2 Tired and a Toddler.
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