One Last Karma Crusade

Dear Dr. Hope Crusher,

CC: Medical Disciplinary Board

Your misdiagnosis really messed me up. I want you to read this so you don’t do the same thing to someone else.

I was referred to you because I had pain in both of my arms for no obvious reason. My family doctor thought I had arthritis, but you glanced at my file as you walked down the hall toward the examination room and decided that I had Fibromyalgia.

It had been just three months since the pain began. There was no pain in the lower half of my body at that time. You jabbed your fingers into my muscles hard enough to hurt me everywhere, not only on the tender spots, but you ignored the fact it was you who was hurting me, not my illness.

You handed me a few photocopied notes and diagrams about stretching and guided me out the door.

There was never any follow up. You didn’t recommend more tests – not even a sleep study – or more doctors. You only saw me once. My family doctor had to prescribe me pills and check in with me and help me manage my day-to-day pain and fatigue.

Because you had incorrectly labelled me with Fibromyalgia, other doctors either thought I was a hypochondriac or a lost cause, and I went for years without finding out what was really wrong with me.

After years of no sleep, even while taking the sleeping pills recommended for patients with Fibromyalgia, I got fed up and demanded a sleep study. Luck for me, I had the energy that day to advocate for health.

The sleep study uncovered a major issue with my heart. I know you’re not a cardiologist, but you’re probably smart enough to realise that cardiomyopathy causes fatigue.

Turns out all I needed were beta blockers and ACE inhibitors to make me feel better. I’m not exhausted or achey or stiff anymore, Dr. H.C. I have been living well without medication for a very long time now, Dr. H.C.

If you had taken the time to diagnose me properly, instead of trying to stuff me into a neat box and then throw me out the door, you would have saved me a lot of heartache.

If you practice medicine every day the way you practiced medicine with me that day, you are a disgrace. You should put your medical licence in that box, set it on fire and then go back to school to become a Wall Street broker.

I’d rather you fuck with my money than my life.

With all my heart,

Jenn

You're Special: ICU

This is the third part in a series. You can read the first part here, and the second here.

They wheeled me right to the ICU from the recovery room after our baby was born.

My experience in ICU is actually the beginning of a very traumatic time. I’ll get to that soon, but first I want to write about seeing a specialist while you’re in a hospital bed.

When you’re conscious and alert, it’s reasonable to shoot for goals like reading cues and writing lists. When you’re wheeled into a room on a stretcher, it’s not.

There isn’t much you can do to control the situation when you don’t know where you are. My situation, being in the ICU, was extreme. Sometimes people don’t ‘know where they are’ even when they literally know where they are.

If you’re so tired/confused/fucked up that you can’t contribute in any meaningful way to your exchanges with your specialists, I have one piece of advice:

Trust them.

For the most part, doctors are competent, caring people. They know the ramifications of their mistakes. They stuck it out in torturous med school because they want help people. They would rather shove their egos into a donkey’s ass, strap that donkey on a rocket and launch it into space on a crash course with the sun, than kill you.

They work long hours trying to figure out what is wrong. They give up time with their families to keep us alive.

Most people are good people; this includes specialists. Unless something in your gut says NO!, trust is a good thing. And good or bad, trust may be your only play when you aren’t conscious.

Just because I had a really bad experience with one of the seven specialists I saw doesn’t mean it’s something everyone should be on the lookout for. It won’t necessarily happen to you.

I learned a lot about the relationship between relaxation and getting healthy in the ICU. Trust starts with letting go, relaxing your fears and erasing those negative mind-tapes. Sometimes it’s easier when you don’t have any other choice.

Of course, I always had an advocate by my side. I was the luckiest girl in the world.

You're Special: Advocate

This is the first part in a series.

I’ve had the pleasure of meeting many doctors. To a sickie, doctors are priceless, but they can also be assholes. Don’t bother reading the glib magazine articles about getting the most out of an appointment – I’ll tell you what you really need to know to navigate the tricky terrain of communication and ego. My specialty is specialists.

Take a buddy. Don’t ask your husband/mom/friend/brother/daughter-in-law to join you because you need a second set of ears, because ears are overrated. You need an advocate in that office; a reminder to the doctor that you are a human being who knows a handful of people, and those people care enough about you to take time off work.

It sounds sick, but doctors find it easier to put you in the whacko column if you’re alone, and when you’re in that column, you’re dismissed. Once that happens, even when you sound smart about your symptoms, you’re considered a potential hypochondriac, and when you can’t find the words to describe the fact that the world looks purple today, you’re a pushover.

There might be a reason nobody cares about this whacko, he might think. Going alone to an appointment has cost me. Don’t let it cost you. Find someone to take time off work for you, even if it’s inconvenient. If there’s absolutely nobody who can make it, consider bringing a cut-out of Neil Patrick Harris.

But seriously, the person sitting next to you across from the doctor’s desk sets a tone: this illness is real and it has affected her family. If you’re lucky enough to have a choice of people to bring, pick the smart, empathetic one who knows all of your symptoms and how each one has made your life shit.

Prep this person beforehand, so you present a united front. Give your husband permission to act as your advocate. Tell him it’s okay to interject with symptoms you forget, or with stories about how bad it really is, if you’re one of those people who would rather keep the mood light.

The more chances you give the specialist to see you as a person, not a file, the more likely you’ll get the care you need.