Feeling guilty for enjoying my life with sarcoidosis and disability

“What are you trying to do — fun me to death?” I asked my husband when he suggested another road trip this month.

We’ve been making the most of our time together since he retired a few months ago, trying to do all the things he rarely had time for over the past quarter-century. With his newfound freedom and my trusty mobility scooter, we’ve enjoyed attending more games and shows than we have in years.

Kerry Wong and her husband, Michael, before a Yankees game at Nationals Park in Washington, D.C. (Courtesy of Kerry Wong)

To do that, I’ve stepped back a bit from some of my volunteer responsibilities. I’m still doing what I can, but now I’m choosing to work on projects on a case-by-case basis rather than maintaining ongoing committee obligations and leadership roles with other organizations.

I’d already started doing that over the past year or two for a few reasons. Primarily, I needed the time to focus on my rare disease book (“Kaleidoscope: Rare Disease Stories,” published this year). But it was also in response to a bit of advocacy burnout. I’ve been burning the candle at both ends for so long that it sometimes feels like I don’t have anything left to give.

Or if I do, I want to give it to my husband, now that he has the time to enjoy it. So off we go! Another game here, another show there. It’s exhausting — but in a good way.

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Without sufficient health insurance, I’ve had to cancel all my infusions, doctor visits, and physical therapy sessions — all of which I usually chronicle on social media to help educate and connect with others affected by chronic illness. Now, my Instagram is filled with concerts, restaurants, and sporting events instead. It feels — and looks — like I’m living a different life.

I wish I could say I was doing it in a different body, though. The pain and fatigue from sarcoidosis are bad enough when everything is going according to plan; without my treatments, those symptoms are worse. I’ve felt weaker and shorter of breath, and I’ve had more pins-and-needles numbness as well.

Still, we’ve been having a great time, and my husband deserves this. He’s earned it after working so hard for so long. But that statement about what he’s earned — one I’ve heard often by many people since he retired — hits me a little differently. Since I didn’t work as hard for as long, I haven’t earned it. Since I haven’t earned it, I don’t deserve it.

Reconciling my conflicting feelings

This echoes a sentiment I’ve seen and heard from many others in the chronic illness community: that if we are sick and disabled, we must always be miserable and incapacitated. If we appear happy or do anything fun, we must not really be sick or disabled. We seem to live under this constant judgment from those around us as we struggle just to exist.

If we appear disheveled at a doctor appointment, we’re easily dismissed; if we’re well put together, we’re disbelieved. When applying for disability services, we live with the fear that the ubiquitous “they” are watching us, trying to catch us being “able.”

But they’re only seeing brief snippets, not a true reflection of our lives.

What they don’t see are all the times I tell my husband to go with a friend because I can’t make it. They don’t see the times I say, “Let’s do it another day.” Or the things I pass up to do the one thing they see. Or how awful I feel afterward (even if it was worth it).

There’s a part of me that feels defensive, like I’ve got to shout to the world, “Don’t judge me!” and “I have a right to exist!” But there’s another part that feels selfish for volunteering a little less and having fun a little more. I rationalize a bit, noting I’m doing this for him and for us, so it’s not just for me, but then I have to defend myself again, so around and around we go.

I’m trying to reconcile all of that with what years of therapy have taught me: that two seemingly opposite things can be true at the same time, and we can have two (or more) conflicting feelings at the same time.

We can be in pain and still be happy.

We can “do nothing” and still be exhausted.

We can be surrounded by people and still feel alone.

We can be grateful for what we have and still wish things were different.

And most of all, we can be sick or disabled and still enjoy a wonderful life.

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.