Advocating for Myself on My Accutane Journey

In case you’re wondering, the miraculous acne medication, Accutane (isotretinoin), is as fun as it sounds.

Accutane is a six-month program, which means I have three months left. The medication is definitely doing something — I went from decent skin to smooth and clear to bumpy, irritated, and dry, all in the span of a month. But I’m counting the days till I’m done with Accutane and its terrible, lovely, infuriating side effects. My pores are shrinking, to my delight, but that also means the medicine is pushing all the nasty acne crud to the surface of my skin.

I am getting very, very good at avoiding mirrors.

It’ll be worth it. That’s what I keep telling myself. If it worked for “Star Wars” actress, Daisy Ridley, it can work for me. (I was watching one of Daisy’s interviews and immediately told everyone in my circle that she took Accutane too. OMG, can you believe it?! It helped me feel better about my reflection — for a while.) My body is healing, and it takes time. Healing isn’t always pretty. I’m trying to give myself permission to be, just as I am, with dry skin and awkward tan lines and a very stuffy nose.

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I knew the consequences going in, so my Accutane journey has been more or less uneventful. I tried pushing the pill through my feeding tube, but the inside of the capsule was gooey and impossible to capture in a syringe, so I started taking it by mouth. Every night after dinner, I pop my pill like a good patient. Every month, I see my dermatologist and smile when the nurse gives my patient care assistant’s daughter a variety of stickers. Then, I squeeze a copious amount of blood out of my finger to prove that I am, in fact, not pregnant.

Urine samples are more trouble than they’re worth for me, so despite my terrible veins, it’s easier to test my HCG levels. If the lab techs listened when I told them, “No, you won’t find a vein. It doesn’t matter how good you are at your job. Just do a finger poke and get it done,” it wouldn’t be such a big deal. But they don’t. Naturally. Who am I to assume that I know my body better than a stranger does?

This isn’t abnormal. It happens every time I get blood drawn. But now that I have monthly lab appointments, I’ve found that my threshold for nonsense has shrunk rapidly. I’m tired of getting poked. I’m weary of advocating for myself to people who are supposed to be my advocates.

I specifically request a finger poke when I schedule lab appointments, but it doesn’t matter. The last time I went in, the technician looked at me and said, “Do you mind if I look at your arms?”

“I have really bad veins,” I told her. “No one ever finds anything.”

“I’m really good at my job,” she persisted.

She slapped me with my heat packs and tied tourniquets and, of course, was unable to tap a vein. “I don’t understand,” she said, peering at my elbow with visible embarrassment. “It’s right there! I should be getting blood!”

I bit my lip. Inwardly, I did the Oprah “told you so” nod.

It took two finger pokes to fill the vial. She rambled about the radio and “Avengers” and (spoiler alert) Tony Stark — she was with Captain America all the way, but Tony’s death did tug at her heartstrings. I flipped the page in my e-book and decided that I wasn’t going to take that kind of treatment anymore.

The medical treatment, yes, but I also just really love Tony Stark.

Overall, I’ve had great experiences with medical professionals. I don’t want to seem ungrateful or rude. But it’s frustrating. I’m tired — of bruises, tourniquets, people who are good at their jobs. The worst part is that they probably are, but I’m equally as good at knowing my body. I’ve lived in it for 24 years. I started Accutane in the first place because I want to help my body to heal. I know what works — and blood draws don’t.

Next time, I’m going to look the technician in the eye. When they ask my permission to search for a vein, I won’t give it to them.

I know my body best, and I won’t rest until people hear what I have to say.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.