Illness Advocate

by Julien-Pierre “Johnny” Campbell

As I have shared many times in my Chronicle articles, I am chronically ill and disabled. I have a compromised immune system, I am hard of hearing, I walk with a limp, I am allergic to everything from pet hair to plants to hand soap, I have fibromyalgia, crippling pain, I have intense sensory issues, I have delayed motor skills, I have multiple mental illnesses, I have plantar fasciitis, GI issues, I’m severely anemic … I could go on. This makes my daily life no less joyful, but pretty complicated. What can exacerbate the difficulties is that 99% of my illnesses and disabilities are invisible.

If someone looked at me, they would see your average Portland twentysomething: skinny jeans, T-shirt, high-top shoes. If I were to walk, they may notice the limp. But from the outside, I look able-bodied and neurotypical. While this does include some inherent privilege that I want to acknowledge, it can also make things quite frustrating. One cannot know that I am in so much physical pain I can hardly walk, or that I am covered in painful hives under my long sleeves because I pet my dog. 

Because of my complicated health, I have had to be my own fiercest advocate in the medical field. I’ve been told my pain is all in my head, that I’m just suffering growing pains, that my pain tolerance is just bad. My favorite is when a family doctor told me at thirteen, “Well, your weight just puts too much strain on your body! Of course your knees hurt!” I was a hundred pounds soaking wet.

Recently, I had to go to the ER. It was the first time my pain levels had landed me somewhere of this caliber. I’d had to go to urgent care several times, and been to my PCP countless times. I was scared out of my wits of the ER, especially as an immunocompromised person in the middle of a pandemic! I had woken up at 2 a.m. sure I had broken every rib in my body. I could hardly breathe, and felt a stabbing pain and then a crunch with each breath I took in. It was terrifying. I’d cried for hours until my fiancee urged me to go to the ER at 5 a.m..

The pain was indescribable. I could barely breathe, let alone sit up and walk. Even still, I felt that I was over-exaggerating. The pain will probably go away in a few days. The medical bills aren’t worth it. I can’t breathe, but maybe I’m just being hysterical. They won’t believe me anyway. Maybe the pain will go away if I just buck up and deal with it. The denial was real. 

Unfortunately, all my worst fears came true at the ER. I was treated exactly as I’d feared: like I was making everything up. The doctor insinuated that I was there trolling for pain pills. When I explained that addiction ran in my family and I was very wary of pills, the physician leveled a look at me like I was lying. An exact quote from him was, “Well, it’s not like you’re having a heart attack! It’s not a real emergency.” At that moment, the pain in my heart was worse than the pain in my ribs. Another useless trip. Another doctor acting as if I was some kind of hysterical hypochondriac. He interrupted me as I rattled off my list of diagnoses to say, “But are you actually diagnosed with that?” Of course I am. I’ve had to fight like hell for these diagnoses since I was thirteen years old. 

I wanted to lay down and give up. But I refused. I have repeated it a million times: if I don’t advocate for myself in the medical world, no one will. If I don’t demand the treatment I deserve, I will not receive it. And so I went on another endless visit with my PCP. I was firm: I wanted a blood test, I wanted referrals to a chiropractor, and I wanted suggestions for how to engage in pain management. I wasn’t rude, but I was steadfast. And I received all of these things. The blood test gave me answers I’d long been seeking, the chiropractor is incredibly helpful, and the pain management skills are at the very least helping my mental health. 

I am ill. I am disabled. But I am proud of myself, and I am not making my conditions up. I am someone who suffers greatly, but someone who advocates for himself fiercely and firmly. And I’ll just have to keep doing it!    

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