In 2008, I was a healthy- if just a touch overweight- twenty-eight year old when I gave birth to my daughter, Wednesday. Labor was so easy, I actually stayed at home and did laundry until my grandparents and husband pushed me out the door, fearing I would give birth in the car. I arrived at the hospital just four hours before Wednesday came into the world, and I shoved her out with one heroic push. ONE.
With the exception of my slightly premature daughter’s inability to nurse, the entire experience was easy. So easy that I was up and walking around my hospital room within thirty minutes of delivery, to the horror of my doctor.
So you can imagine that it came as a huge shock when, a mere eight weeks later, I could no longer walk, stay awake, or otherwise function.
I believe that all my current medical issues can be attributed to a near-miss car accident that occurred about six weeks after my daughter was born. I was driving my grandmother to the grocery store when the car in front of us pulled a sudden U-Turn into the path of an on-coming vehicle. That second vehicle swerved into our lane, and we went off the road. I ended up with a mild case of whiplash. Since then, I’ve done a lot of reading on the effects of neck injuries on the brain and nervous system, and I’m absolutely convinced that this “whiplash” I left untreated – “It’s not that bad!”- is what caused the health issues I’m battling now.
Live and learn.
Two weeks later, I was walking up the stairs from doing laundry, and my knees quit working. I had never felt so tired. It was like someone had just flipped a switch and I felt awful.
The moment just prior to that incident is the last time I remember feeling “normal.”
When I went to my OB/GYN for my post-natal checkup, I expressed my concern over this. I told her about how run down I was, how tired and weak I felt, and how I was in pain all the time. I likened the pain I was feeling to the day after very strenuous exercise. She suggested that I was still “bouncing back” from childbirth. She wasn’t the doctor who delivered my child, so she didn’t know how easy the birth really was. When she checked her colleague’s notes in my chart, though, she became concerned, and referred me to a GP who took uninsured clients.
The GP I saw was a really smart, really professional lady I will call Dr. Red. There are a lot of doctors in this story, so I’ll just assign them color names. Dr. Red assured me that she was going to get to the bottom of this mystery problem, since it was impacting my life so terribly. She sent me for some blood tests, including a rheumatology panel and thyroid test. When the results came back, I was shocked: it was a mere Vitamin D deficiency! I would just take some supplements and I’d be cured!
Three months later, I was back in Dr. Red’s office. I was walking with a cane now, and I could barely keep my eyes open waiting in her office. Since my mobility had been affected, my activity level had dropped drastically, and I had gained a whopping eighty pounds, just over three months. I’m sure you can imagine what she blamed for my condition: “Of course you hurt, you’re morbidly obese!” When I pointed out that I was not morbidly obese when I first came to her office for the same condition, she brushed me off and insisted I had a Vitamin D deficiency and I needed to go on a diet. I was probably just eating too much junk. I told her I was taking the supplements, I’d even upped the dose, and nothing seemed to be getting better.
Then I told her about a syndrome I’d read about on the internet, a syndrome I had many, many symptoms of. “Do you think it could be Fibromyalgia?” I asked, and she snapped back, “You sound like you want to be sick.”
Let me pause here to explain why some people, when seeking a diagnosis, seem like they “want to be sick.” It’s because when you feel 100% shitty, 100% of the time, you want to know why. You want to put a name to why you feel the way you do, in part because you can then be proactive about it and work toward feeling better, in part because you secretly suspect you might be making it all up without realizing it. To hear, “You sound like you want to be sick,” is devastating to people struggling with an undiagnosed chronic illness. It’s dismissive, unsympathetic, and flat out rude. Plus, it doesn’t make a lot of sense; if a person was so mentally ill that they truly desired sickness or attention from sickness, that’s a serious psychiatric disorder known as Münchausen Syndrome, and these people should be treated as mentally ill, not shamed for their attention seeking.
Side note: Münchausen Syndrome is sometimes referred to as Somatoform Disorder, a psychological illness that some doctors believe is the root cause of Fibromyalgia, aka, “You want to be sick, so you are.” If the doctors who truly believed Fibromyalgia patients had Somatoform Disorder treated it as a mental illness and sought treatment for their patients, this wouldn’t be a problem. Unfortunately, these patients are dismissed and shamed out of hand for being “crazy,” and I’ve found that medical doctors who don’t work in mental health fields have little to no respect for people who are “crazy.” It’s a character flaw, not an illness.
Anyway, because I didn’t know better- and possibly because I was raised Catholic in a “bootstraps!” kind of family- I decided that this doctor was right. I was just making it up. Dr. Red gave me prescriptions for heavy painkillers, lectured me about drug abuse, and I suffered in a narcotic haze for some more long months, feeling guilty all the while, until something… weird happened. You can read about it here, but the gist of it is, I had a softball sized tumor wrapping tentacles around my spine at the base of my neck. If you ever meet me in public, feel free to ask about my scar, I’ll totally show it to you.
While waiting for my surgery day to arrive, I had a seizure. This delayed the surgery while I had other tests done. Dr. Red questioned me about everything I had been doing to cause the seizure; she thought it was self induced. I admitted that in addition to the medicines she had put me on, I had begun occasionally supplementing marijuana for pain. The reason, I told her, was that my husband had quit his job to go back to college, and I had reentered the work force. Remember, at the time I thought I was just lazy and crazy and seeking attention, so I assumed I could totally withstand the grueling pace of fast food work. I knew I couldn’t work at McDonald’s high on Vicodin or Oxy, but I knew from years of experience that I could totally work at McDonald’s high on weed. She told me that my seizure was obviously caused by marijuana- a dangerous, evil drug with no medicinal benefits and yet another clue that I was just a drug seeker- but if it would make me feel better, she would send me to a rheumatologist.
I had the surgery to remove the tumor, my back was a little less Quasimodoish, and I went to see the rheumatologist. We’ll call him Dr. Green. Dr. Green took great delight in pushing on my “trigger points,” extremely painful spots that Fibromyalgia sufferers have all over their bodies. Sometimes, even the brush of your clothing on a trigger spot is enough to launch you into days of agony. My first rheumatology appointment was horrible, but it was also wonderful, because I finally had my diagnosis. Dr. Green was in the room with me for about ten minutes before he said, “You’re textbook Fibromyalgia and hyper-mobility. You need to get a new GP.” He also told me that there was “no way in hell” that marijuana had caused my seizure. He blamed Tramadol, a painkiller I was prescribed by Dr. Red, and told me to immediately stop taking it. He explained that another medication I was on, Gabapentin, was an anti-epilepsy drug, and that in my chart Dr. Red had noted that her reason for prescribing it was to offset the chance of seizure from the Tramadol (I have a mild case of Restless Leg Syndrome, which Dr. Green told me could slightly increase the risk of seizures from narcotic pain relievers… the more you know). None of this was ever discussed with me; I was told to take these medications “for pain.” Frustrated with Dr. Red, Dr. Green gave me the number of a doctor who issued cards for the Michigan Medical Marihuana Program and told me that his Fibromyalgia patients were benefitting from the drug.
I should have saved the name Dr. Green for the weed doctor. Damnit.
No, I kid. I’ll use that guy’s name, because he helped save my life. His name is Dr. Crocker, and he’s amazing. Although, my first visit to his office was less amazing, because I didn’t see Dr. Crocker that time. I saw another physician, a woman who told me I was too fat and Fibromyalgia wasn’t a real disease, but who reluctantly issued the card, anyway. Whatever, I didn’t care. Now when I go to the office, I just make it clear that I need to see Dr. Crocker and not the other one. My cousin D-Rock enrolled in the program as a caregiver, so she could grow plants for me- in my condition at the time, the strenuous work of a grow-op would have been far out of reach for me. D-Rock had a personal stake in this operation; she’d seen family members struggle with and die from addiction to pills like Oxy, Vicodin, and Norco, and she had lobbied long and hard for me to stop taking them.
On the MMMP, my life changed drastically. I no longer used a cane. I started running. I started losing weight! It would have shocked Dr. Red, I’m sure, to find out that it was my pain making me fat, not my fat causing my pain. But she’ll never know, because I’ll never go to her again. After a long time of not seeing any doctors at all- I didn’t need to! What a concept!- I ended up in the emergency room with a crushing headache. Long story short, a very tired resident accidentally broke the news to me that I had a brain tumor.
I did not have a brain tumor. I had a migraine.
I saw a new doctor, because no way in hell was I going back to Dr. Red- it didn’t matter, she no longer practices. I do not know the reason why, but obviously, I have my suspicions.
My new doctor, Dr. Blue, looked over my chart, found that I didn’t have a brain tumor after all- “He was obviously in the wrong room,”- and told me some really awesome information. Like, the fact that the only blood tests Dr. Red did when she promised me she’d done a full panel were for Vitamin D deficiency and cholesterol. She’d never done a rheumatology panel, despite telling me I’d had one and it had come back normal. And as it turns out, I have epilepsy- a condition that wasn’t diagnosed because I was on Gabapentin when I was sent for my EEG. If I had known more about the drug and why it was prescribed, I might have mentioned it to the technician doing the EEG.
I’m pretty mad that lost three years of my life on crazy drugs I didn’t need and suffered through being told I was making things up for attention. I really feel that one sentence, “You sound like you want to be sick,” is what kept me from being proactive about my health for such a long time. Now, I’m healthier than I’ve ever been. I lost sixty-five pounds (I’m still fat, but I’m less fat than I was). I run (at my peak, I was running twelve miles a week, but I’ve backed off now to nurse a tendon injury). I did P90X. I can walk around! It’s a miracle!
What I’ve learned from this experience is: just because someone is wearing a white coat doesn’t mean they’re smart. And as a patient, you have the right to a doctor who listens to you, and who is honest with you and doesn’t lie about what care you’re receiving. And never let your doctor prescribe any medication for you if you don’t know what it does.
I still have my bad days, both due to depression and to Fibromyalgia. But now that I have a good doctor and a good plan for pain management, rather than someone who shames me for complaining about my pain, my quality of life is a lot better. Do I consider myself disabled? Yes, I do; some days, I am genuinely disabled by my conditions, and occasionally I need assistive devices. I definitely can’t drive anymore, because of my seizures. But I suffer from invisible disabilities, so I have the privilege of hiding them, if I want to. I never have to tell anyone I’m sick if I don’t want them to know, and I realize that for many people, this is not the case. My life and my health could be a lot worse, so I’m grateful for the good doctors- especially Dr. Crocker, who is still one of my care providers- and loved ones who cared about me enough to see me through those bad times.