How Navigating the Medical System With Fibromyalgia Is Like Being Lost in a Carnival

The experience of a chronically ill person in the medical system is a little like being lost at a carnival. You are surrounded by promises of natural cures, fancy gadgets, alternative therapies, all set alongside dire stories of nothing working and predictions that things will only get worse. There is no end to things you can spend your money on and the noise and chaos make your head spin. There doesn’t seem to be any map or guide to get you through this particular carnival.

I have been diagnosed with chronic daily migraine and fibromyalgia. My journey through the medical system is a story I’ve heard from people both north and south of the Canada/US border. It’s very much one of being lost in a system with no answers and no idea of a way forward.

I was diagnosed with chronic migraine in a specialized headache clinic after nearly a year’s wait to be seen. I spent about 10 minutes with a registered nurse who asked me a series of questions, followed by about 20 minutes with a resident, who repeated most of the same questions and did a couple of functional tests. I then spent five minutes with the physician who diagnosed me. I was told I had a choice between a particular medication or a very expensive round of Botox shots. I was told my condition was very difficult to treat and that to some extent I would have to learn to live with it. I was sent back to my primary physician with no follow up.

 

I was diagnosed with fibromyalgia by a rheumatologist after a 10-month wait. He poked and prodded all the trigger points and asked me subjective questions about how much they hurt. He was actually very kind. He spent about 20 minutes asking me about lifestyle, fatigue, symptoms. He looked at my chart and saw the medications I’d already tried. He said, “Well, 50 percent of my patients don’t respond to medication and you look like you fall into that percentage.” He suggested light exercise and rest. He told me I’d have to learn to live with the condition. He sent me back to my primary physician with no follow up.

And this is where I have the problem. Both specialists in the field of chronic, life-altering diseases told me to learn to live with my disorder and sent me away. I understand there is no cure. I understand what chronic means. I understand that medication is only going to be a Band-Aid, and for the most part will not be an option for me. I understand I need to live with it.

But doctor, you are the expert in the field of chronic pain, so help me learn to live with. Teach me some skills; give me a book; point me to a support group; show me a guide that can help me navigate the waterfall of
diet/supplement/alternative treatment information that is out there; give me an indication of what alternative treatments might be helpful, so I can avoid the ones that aren’t – even a pamphlet. Something. Anything. Take one day out of your busy schedule to scribble something down that might be helpful to your (given the waiting list) many, many patients.

Imagine if a group of rheumatologists hired one person to be a liaison, to act as an information service, to run a support group. The cost would be minimal and the benefit to the patients would be considerable.

Imagine if patients were treated like precious gems that needed to be cared for and appreciated. Imagine if the specialist’s first passion was to show compassion and improve life. Imagine if I could be treated as, not a fibromyalgia patient, but a person – deserving of a life as complete and full and beautiful as possible despite my disease.

But most of us are just sent on our way with a shiny new diagnosis in our pocket and left to find the way on our own. And so we seek out information on Google and talk to strangers on the internet and try so many different things and spend money we don’t have. Anything to find something that will help us cope. We try diets. We try expensive supplements that might negatively interact with our medications. We try chiropractic, physical therapy, occupational therapy and massage. We try things legal and illegal. We try things both safe and dangerous. We may not be expecting a cure, but we are seeking hope and some comfort.

It’s an exhausting process added on top of an already exhausting disease. It leaves us feeling very, very alone.

At least now there are people who are speaking up – people like Jennifer Brea and Lady Gaga who are demanding answers and saying “this just isn’t good enough.” I think we all need to be more vocal, to start asking more questions, making more noise. This isn’t good enough.

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Thinkstock photo via ViewApart.