Making peace with what symptoms of sarcoidosis allow me to do

I recently saw a post on social media that stated, “I’m a person who wants to do a lot of things trapped in a body that doesn’t.”  I felt this sentiment deeply; it was a perfect description of my life with sarcoidosis.

I’ve always been someone who wants to do a lot. In my younger (and healthier) years, I worked multiple jobs and volunteered enough to make for another full-time job. I went to baseball and football games and Broadway shows and traveled for activity-filled vacations. Back then, my body wanted to do just as much as I did.

It wasn’t just about staying busy; I wanted to do all I could to support and empower those in need. Aside from volunteering, I worked as a teacher, a Medicaid service coordinator, a nutrition program educator, a charity event planner, and more. I remember one colleague lecturing me about working so much. “You can’t save the world, you know,” she said. True, but I could still help some people in it.

That’s why I was so devastated when it seemed I wasn’t able to do that anymore. I didn’t know who I was if I couldn’t do everything. Honestly, it felt more like I couldn’t do anything. Over time, though, I was able to figure it out.

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Different ways to do things

I often describe myself as “a happy hippie trying to do some good in the world, living with a bunch of chronic illnesses that only think they can stop me,” but it’s not quite that simple. The reality is that my health does stop me from doing specific activities (many, many specific activities). But it can’t stop me from doing “some good in the world.” I’ve just had to find different ways to do it.

• Pain and fatigue keep me from doing most physical work, but I cherish the virtual opportunities that abound.
• My diseases and medications prevent me from donating blood, but I’ve organized several blood drives.
• Fatigue and brain fog dissolve the focus I’d need to write a book, but I can write this column and create a “Kaleidoscope” of rare disease stories.

My biggest problem is that I don’t know how to do anything “just a little bit,” and I’m not very good at sitting idle when I know someone could use my help. In the past, I didn’t just do my job; I facilitated trainings and organized work events. As a volunteer, I couldn’t simply participate in walkathons; I had to create and chair new ones.

Though I’ve adapted my efforts to meet my abilities, I still want to do as much as possible — more than possible, really. And that’s where I get myself into trouble.

I’d like to say that it’s not my fault, or at least it’s only natural. After all, who wouldn’t want to do more of what they love? So I sign on for more projects and more leadership roles with more organizations, and create more independent projects, as well. Then I feel both overwhelmed by doing too much and inadequate for not doing enough.

But just this morning, I got a message from a friend who, because of multiple health issues, hasn’t been able to put as much effort into an upcoming awareness event as she would’ve liked. She was concerned it wouldn’t have as many participants or reach as many people as in previous years. So I told her the tale of “The Star Thrower.”

As the story goes, thousands of starfish were washed ashore during a storm. A child was walking along the beach, tossing them one by one back into the ocean, when a man approached. He told her that she couldn’t save them all — that there were so many, she wouldn’t even make a difference. The girl picked up another starfish, tossed it in the water, and proudly shouted, “Well, I made a difference for that one!”

I reminded my friend how often we say, “If we can help just one person, then the effort is worth it.” I assured her that even if we don’t reach the 300 million people around the world living with rare diseases, what we’re doing still makes a difference to the ones we do reach. And that matters.

As I was typing this response to her, I realized that I should take that idea to heart, too. If only a few people attended my sarcoidosis support group or awareness events; if only a few listen to my podcast episodes; if only a few of you join my advocacy activities or fundraising teams; if only a few of you participate in my Twitter chat; if only you read this column, then you are my starfish. So if I can make a difference for you in any way, I’ve achieved my goal.

And that’s what makes me “Float Like a Buttahfly.”

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.