Rewriting The Sick Story: My Transition From a Lump of Sickness to a Health Boss
Carlie's story about navigating the health system to find answers.
About Carlie: Once upon a time Dr Park was a clinical psychologist who liked to help children and families facing disadvantage. Then she was suddenly struck down with chronic illness. As a patient, she experienced frustration with the traditional medical model and a world designed for healthy people. Carlie Park rose as a patient-rebel and disability activist. Carlie now writes, speaks and creates art that advocates for the empowerment of patients and for the greater inclusion of the chronically ill in the community. She was an organiser, artist and film participant for the Disability Pride Mural in Footscray. When tired from causing trouble, Carlie curls up on her vintage couch with her ball of fluff, Vincent, and watches, reads or plays sci-fi.
As a child, I remember being taught the Sick Story through picture books like Miffy Goes to Hospital. My parents would read me stories that went something like this –
Miffy feels sick. Her mother takes her to the hospital to see a doctor. Miffy tells the doctor what feels bad. The doctor looks at Miffy’s tongue and in her ears. He says, “Don’t worry Miffy, I know what’s wrong with you. Take these pills every day and you’ll feel better.” Miffy goes home, takes the pills and feels better. Hooray for the doctor!
I also had one of those toy doctor’s kits with a little plastic stethoscope, blood pressure monitor (I liked squeezing the pumpy bit) and a hammer (I think it was for hitting the patient’s knee and checking their reflexes, but sometimes we’d whack other body parts with it just for fun). I’d used the kit to play the game “Doctors and Nurses” with my friends. Someone had to play the sick-person. It was their role to pretend that they were hurt and sad, and to ask for help. It was a pretty boring role – you were just a big lump of sickness. Everyone wanted to play the doctor because as the doctor you got to use the cool toys, act smart and magically fix the sick-person. For the first 30 years of my life, I believed in the Sick Story. When I felt sick with a cold or flu, or I hurt myself, I would visit a doctor and they would tell me how to get better. It worked.
Then, in my early 30s, strange things started happening to my body. I slept all night and all morning, but I still felt tired. I developed a deep, glowing tan, but I hadn’t been sun-tanning. I had dark patches that looked like bruises on my knees and elbows, but I hadn’t knocked myself. I felt sick in the stomach, but I only felt like eating lollies and salty potato chips. Whenever I stood up, my head spun and chest hurt, but I was fit. Following the Sick Story, I went to see my doctor and pointed out where I felt sick. My doctor examined me and sent me away to get blood tests. When I returned to see my doctor she said “I can’t find anything wrong with you. Maybe you are too busy and should slow down.” It was a relief to know that nothing was seriously wrong with me.
However, I got sicker – I became dizzier, I vomited randomly, and I lost a lot of weight. Desperate to feel better, I went to see my doctor over and over asking for help. Each time they told me that they couldn’t find anything wrong with me. “Why wasn’t the doctor making me better?” I thought in frustration. The Sick Story wasn’t working. It needed to be fixed.
This was the point at which I began rebelling against the Sick Story and playing the sick-person. It started with doing something that my doctor had told me not to do – I researched my symptoms. I came across a disease that I’d never heard of before called Addison’s Disease. It’s a rare, life-threatening disease of the adrenal glands. I had every single symptom; even the tan, weight loss and cravings for salty chips were explained by this disease.
I prepared a short presentation and a summary sheet about why I thought I had Addison’s Disease. When presenting this to my doctor, I did not allow her to interrupt me (though she tried a few times). I was the boss for a change! She immediately agreed with my proposal and sent me off for specialist testing. I fell seriously ill in the days awaiting the results and I was diagnosed with Addison’s Disease in hospital. I had literally saved my own life.
Now I knew what was wrong with me, I hoped to get back on track with the Sick Story. It started off well. A special doctor came to see me in the hospital. He told me, “you just need to take one pill a day and you’ll feel better than you have in years.” As a good sick-person, I went home and took my tablets as he told me to.
But I still felt sick. Now I felt sick all day, every day. I went back to see the special doctor. He told me, “You should be better. Everyone else with Addison’s Disease is better on these pills. Some of them run marathons.” I was so tired of my body not doing as it was supposed to do that I cried.
I pulled myself together. It was time for me to be boss again. I defied my doctor’s warnings about online patient groups and joined a Facebook group for people living with Addison’s Disease around the world. Through this group, I quickly learnt that my doctor had told me a fib – there were actually lots of Addisonians who, like me were still feeling sick after taking the pills. I also learnt that the treatment he’d told me to follow was out-dated. Other patients and doctors had lots of ideas for different ways of taking the pills that could be helpful. It was a relief to know that I wasn’t alone in my struggles, that I wasn’t making up my sickness and that there were things I could to try to feel better.
I presented my treatment ideas to my special doctor. He seemed to find it funny that I was acting like the health-boss. He agreed to let me try several of my ideas. One of these ideas (switching to a longer acting version of my pills) worked especially well. I went from spending most of my days sick in bed to being able to work 2 days a week and get fit again. Go me!
With a growing confidence and an increased knowledge of how to be a health-boss, I sacked both my GP and special doctor. I found new doctors and health professionals who had been recommended by other patients. I created my own patient record file to take to these new doctors. I gave the new doctors a report of my medical history and current health goals that was written by me. I asked them for any recommendations they had to add to my health-work. I was the health-boss, they were my advisors.
Meanwhile, my body started being sick again, even on the new pills. I knew what I wanted the next step to be in my treatment. Based on the work of a UK expert in this field, I guessed that my body was burning through the pills very quickly (this was later proven by blood tests). I wanted to try cortisol pumping – this involves using a diabetes insulin pump to give me my medication continuously through my skin.
It took 3 years for me to get a cortisol pump. I started with presenting a proposal for cortisol pumping to my special doctor. He explained that his hospital was unwilling to do cortisol pumping. I didn’t take no for an answer. I tried several other special doctors but was knocked back each time. I wrote to the UK expert in cortisol pumping, asking for his assistance. He told me of a special doctor near me who might help. Although this doctor was willing to help, I needed to do much of the ground-work myself. I worked out how to get health insurance to pay for my pump. I talked with the pump-seller about getting discounts on supplies. I talked with other cortisol pumpers to find out about how to run a pump.
After 8 months, I still wasn’t close to getting my pump. I was fed-up with doing all of the work and the slowness of the public hospital system. Luckily, in chatting with a pump-seller, I’d heard of a special doctor who was enthusiastic about starting cortisol pumping at their private clinic. They sounded perfect except their clinic was interstate. I made contact with them, and arranged Skype consultations and two interstate trips. Within a few months, I was finally cortisol pumping. Since starting on the pump earlier this year, I have more energy and better mood, I’m sleeping better and I no longer need to take pills 6 times per day.
I focus on being grateful that my health has improved and for the respectful team of doctors I now have. However, sometimes I feel angry that most doctors didn’t listen to or support me, and that they made my recovery longer and more difficult. I don’t want others to go through this. So I created a blog called “Chronically Crappy” where I share my knowledge and experiences. I am proud that so far, at least one other Addisonian has accessed cortisol pumping as the result of reading my blog.
I have also joined with other disabled women to fight more broadly for the rights of people with chronic illness. I am a member of the Experts by Experience Working Group at Women with Disabilities Victoria, I have contributed artwork to the Disability Pride Mural in Footscray, and I was a member of my local council’s Disability Advisory Committee. I have been able to use these opportunities to fight for changes to policies, systems and attitudes that support patients becoming the bosses of their own health.
Looking back on my experiences, if I was to write a book for my young nieces about being sick, it would be very different to Miffy Goes to Hospital. It would read like this:
Carlie feels sick. She goes to see her doctor. Carlie tells the doctor what feels bad. The doctor looks at Carlie and runs some tests. The doctor says “I’m sorry, I don’t know what’s wrong with you. Do you have any ideas?” Carlie goes away and conducts research and chats with other patients. Carlie returns to her doctor with ideas about what is wrong with her and how to fix it. They discuss these ideas and write up a plan together. Carlie follows the plan and feels a bit better. Carlie shares her experiences with other patients who also find ways to feel better. Hooray for all!