Finding the Antidote for Impostor Syndrome

As I type this, I have 13 tabs open in my browser. I’ve been working on advocacy campaigns for the Arthritis Foundation and the RareAction Network, preparing for Rare Disease Week meetings with my members of Congress, reading other perspectives on Rare Disease Day, checking three different email addresses, shopping online for groceries, and texting with my mom, my husband, and a friend. And working on this column.

As busy as that sounds, I sometimes find myself suffering from impostor syndrome.

I generally like to think of myself as a strong rare disease advocate, a good source of support for others, and a good resource on health issues. Some call me a mentor, while others refer to me as a patient leader. I feel confident and proud of what I’m able to do and how I’m able to help via these roles.

But there are times when I feel like an impostor, like I’m not as good, strong, helpful, or knowledgeable as my titles suggest. Like whatever I do isn’t enough. Like I’m just fooling myself and everybody else, and any minute now, people will realize that I’m nowhere near as great as they think.

It’s a fairly common sentiment, especially among women, and even more so among the formerly-busy-but-now-chronically-ill.

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Impostor syndrome isn’t new for me, either. A few years ago, I wrote about feeling like a slacker during Sarcoidosis Awareness Month in April because others were doing much more than I was. That feeling of inadequacy is coming up again now as my social media feed and email boxes are filled with more Rare Disease Week programming than I can keep up with. I’m doing my best to share what I can and to create, present, and offer as much as I can, yet I still feel like my best isn’t good enough.

But I had a revelation.

In a typical month, I write two columns for Sarcoidosis News and host a sarcoidosis chat on Twitter. In the same time, I usually lead at least one significant arthritis advocacy meeting or initiative and have at least one fundraiser to promote. That’s only about five activities in a given month — basically one a week. I compare that to everything happening around me and everything I used to do when I was healthy. And I always come up short.

Then it occurred to me that I can’t compare myself like that. It’s not realistic, helpful, or fair. Since I can’t help but do it anyway, though, I decided I would do a true comparison, fully and fairly.

I started by looking at what my friends in the chronic illness community are doing. Dozens of actions every month are taken by dozens of organizations and individual advocates, each shared multiple times so they appear repeatedly in my news feed, making it seem like even more.

I realized that it’s not just one person, or even one organization (full of healthy staff), getting all of that done. So, if I’m doing one-tenth of what I see happening all around me — one-tenth of what it takes dozens of individual advocates and national organizations to do — that’s actually pretty impressive. Not bad, Buttahfly.

But then I hear that voice again. Not bad, Buttahfly … but nothing like what you used to do.

I used to work 60-70 hours a week and then volunteer enough for it to practically qualify as another full-time job. I chaired committees, managed fundraising events, and organized blood drives. I ate well, exercised, and had an active social life. I was thriving.

Now, in addition to “only about five activities,” I’m also managing life with sarcoidosis and several comorbidities. Last month, that included:

• Four physical therapy sessions
• Four all-day intravenous immunoglobulin infusions
• Four post-infusion recuperation days
• One therapy session
• Two pain management appointments
• One gynecology appointment
• Three blood draws
• One fluoroscope-guided injection (not to be confused with the 12 injections I give myself at home every month)
• One CT scan
• One COVID-19 vaccine booster shot
• Five appointments canceled due to severe symptoms
• Twenty-eight days filled with pain
• Twenty-eight days filled with fatigue

If that looks like a lot, well, it is.

We’re often our own worst critics, and comparing ourselves to others is natural, if ill-advised. But if we’re going to do that, we need to be honest with ourselves and recognize how much we’re really doing even when it feels like we aren’t doing much at all.

With sarcoidosis, we are fighting a battle every day. Our bodies are working against us, making every step, every breath, more difficult than it should be. Despite all that, we are still here. We are not impostors — we are warriors, and we are winning.

Note: Sarcoidosis News 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 Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.