CN: chronic pain, medical neglect, fat-shaming, discussion of specific health issues and their symptoms
Today’s guest post is written as a follow up post to Sunflower Punk’s piece, “Broken,” on her blog on The Orbit. The article covers her life-long struggle with chronic pain, living 6 years with an untreated broken ankle, doctors blaming her health problems on her weight, inaccessible housing, and juggling all of those while also raising a kid as a single mom. It’s worth a read as is her follow up post today.
I get these suspicious looks from people. As a fat person, I've had plenty of people blame my weight on my chronic pain. And when I explain why I needed to wear a medical boot, I get more than a few eyebrow raises.
I recognize that look. That look that says, “Lose weight. Don't be lazy”. There is this idea that a young person should be healthy and if they aren't they're somehow at fault. It can't be that their body is failing them. No, it must be some failing on the person. I'm young. There is no reason I should be sick. It must be my weight and that's something that can be dealt with easily. That's what that look says.
Back in January, I wrote about living 6 years with an undiagnosed broken ankle and more specifically about living with chronic pain. I think it's time to talk about the treatment I am currently going through and have been through since.
I was given a boot to wear. An uncomfortable boot that made me self-conscious every time I stepped outside. People would ask what was wrong and I'd explain and sometimes it was just too painful to recount how my many doctors just refused to treat me and how overwhelmingly ableist the medical establishment is. After a while, I didn't bother explaining. I'd just say it was sprained.
My doctor wanted to do a CAT scan on my ankle to see how severe the break was. My insurance denied it. Their reasoning was that I had not been in my doctor's care long enough to justify that expense. My doctor tried explaining that the break had gone undiagnosed for years but the insurance wouldn't budge. Instead, the doctor sent me home with a device that I had to wear 20 minutes a day while it sent small electrical charges in the hopes that would heal the break.
On top of the broken ankle, I was diagnosed with plantar fasciitis. So in addition to the boot, I also had to wear a special insert to alleviate some of the pressure. For pain management, the doctor told me to take acetaminophen or ibuprofen. I was already on gabapentin, muscle relaxers, and nabumetone but it was not enough and I was still in pain.
I know I should use that device for my ankle every day but I don't anymore. It feels pointless. I'm not using the boot or insert anymore either. They're cumbersome and didn't help and by now I've gotten used to dealing with my broken and pained foot.
I’m working on switching doctors because I know that having nothing but useless treatments is probably causing more damage to my foot and I need some actually effective medical care to have a shot at getting better.
I have extensive nerve damage throughout my body, especially in my hands and feet, and none of my doctors have been able to figure out why. My rheumatologist took me off Nabumetone. Since she suspects the nerve damage is likely due to an autoimmune issue, she put me on methotrexate, which is an immunosuppressant.
I hate how methotrexate makes me feel; tired and more worn out than usual, nauseated and overheated. On the days I take methotrexate, which is also used as chemotherapy, I have to plan out my day and allot spoons or energy to certain tasks. Some chores won't get done that day.
Several of the medications I'm on cause fatigue and drowsiness so I always feel like I am running on fumes. I'm a single mom and that means my days are even harder. If not for my mom's help, I would be completely lost.
But knowing that doesn't help my feelings of failure and despair. I feel like a bad mom because I can't run around with my daughter. I feel like a bad daughter for having to depend on my mother so heavily. I feel like a failure because some days I am just too tired and in pain to work on my writing or my art.
Sometimes I feel like a drain and a burden.
Those feelings become worse when I face people's judgments and looks because I'm using mobility devices or the elevator rather than the stairs. Those judgments and looks also show up when I don't follow their misguided advice, however well-meaning it may be. Losing weight will not reverse the nerve damage I have. Adding or eliminating things from my diet won't suddenly make me able-bodied. Praying and going to church won't cure my spinal stenosis. Thinking positively or smiling through the pain won’t make my illnesses easier to deal with.
Taking acetaminophen practically every day aggravated my already frequent migraines. That's due to something called a rebound headache caused by overuse of acetaminophen. So my neurologist has put me on a blood pressure medication that I have to take twice a day every day without fail. These should help with the migraines but because it is intended to lower blood pressure it also contributes to my fatigue.
So, that's the constant state I am in; exhaustion. The current heatwave is not helping either. Today the heat made my pain worse and it hurt to walk. Sitting down and climbing stairs were both chores.
I wish I knew what it was like to live without pain. I wish I knew what it was like to be able to run. My partner visited this week. I took them out and at the end of the day, I was in so much pain. I want to be able to be a full member of society. One that can take a walk or go for a run and not be able to function the next day. I built a bookcase a few weeks ago and I was laid up in bed for several days after.
My life these days seem to revolve around many doctors, pills and medical appointments. I've had to learn about medication interactions and memorize names and dosages. If I'm not talking about my chronic pain, I'm thinking about it. I'm constantly explaining it and trying to find ways to make the explanations easier and quicker. It's been my experience that people want to know why you're sick but they don't want in-depthness. They want a quick easy explanation. One where there is something or someone to blame.
I just want a break. Pun intended. I have to laugh otherwise all I'd do is cry.
About the Guest Blogger: Sunflower Punk is a disabled, queer, Puerto Rican single mom, artist and writer. She writes about feminism, raising a girl child and social justice. She writes for The Orbit Network as part of the blog 'Splain You a Thing. You can find her art on her instagram @sunflower_punk.