Enjoying Life Shouldn’t Come With Guilt as Well as Chronic Illness

The Labor Day weekend was a good time to be alive. As an extrovert with a few days off work, I packed the calendar full of social activities, parties, and meals with friends. School and a busy work season are just around the corner, so I felt drawn to enjoy the last shreds of summer while possible. I connected with people, spent time in the sun, enjoyed drinks, and stayed up too late.

The catch was the guilt I felt, as a vasculitis patient, for doing all of those things.

Whenever I have a certain level of fun, an alarm bell goes off in my head. It’s difficult to enjoy anything fully when my mind is telling me that I’m somehow bad for doing so. This is true even though I know that I respect and want to protect my body too much to ever truly let loose.

But after nine years of steady remission, it’s tempting to forget about my condition and live like healthy people do. Especially because I’m young and have friends who party.

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As mentioned before, I love a good whiskey. While I don’t have addiction issues, I do probably intake a bit more than someone with an autoimmune disorder should. Ideally, I’d have a glass and call it a night — but when someone mixes up a good old-fashioned, I really want to enjoy more than one!

Sugar is another challenge. For as long as I can remember, I’ve had a raging sweet tooth. So a simple request from a friend who wants to go out for ice cream invites caution. Should I indulge, or should I do what’s “right” for my body and not introduce more harmful ingredients to it?

Of course, inflammation is always at the forefront of my mind. Over the years, I’ve read articles and tried to do research that explains the effect certain foods have on the body. Naturally, sugar and alcohol are two of the worst, so the alarm bells go off loudly whenever I enjoy them.

With chronic illness, it’s hard knowing where the line is. (In remission, it becomes even more faint.) We have to enjoy our lives without putting ourselves in danger. If a weekend out in the city means making sacrifices for how we feel, is it worth it?

My answer to that: sometimes, yes — as long as I set boundaries and give myself a day or two afterward to catch up on rest.

For example, you might know that traveling to go to a wedding is going to physically drain you. But you need to ask yourself, is a few days of being tired worth being there for your family member’s special day?

Or maybe there’s a new restaurant you’ve been really wanting to try, but you know it won’t have the cleanest menu. Try the dessert after you’ve had some protein and veggies on your plate, and you can have the best of both health and indulgence.

We have to live while we can live. Otherwise, what’s the point of working to get healthy?

I could say “moderation is key,” but I don’t want to sound like the Farmers’ Almanac. We live in a fast-paced world with the luxury of so many good things in life. There’s no reason we can’t enjoy them all while still taking care of ourselves. But keeping the guilt at bay is a struggle I’ve dealt with for over a decade.

There’s a few things I occasionally tell myself to stay in the right mindset. Some people might label them as affirmations, but I call them reassurances:

• It’s OK to sleep as long as I need to in order to feel energized.
• I don’t have to say yes to every social engagement.
• There are delicious things to eat that won’t irritate my health.
• Connection with friends is good for me.
• It’s OK to have fun!

At play also is survivor’s guilt, a very real phenomenon in chronic illness. Why should I be out and about when others with my same disorder may never get that opportunity?

The clincher is this: I’ve spoken to those people, and they want me to enjoy life.

I know that not everyone can participate in social activities to the same extent. I feel fortunate that I’m well enough to leave the house, meet up with people, and try new food and drink. I don’t take for granted the sweet things in life, and I’m grateful to have the energy to indulge in them.

I’ll continue to rest, hydrate, and take care of myself regardless of what’s on the calendar. And in the meantime, it’s a good thing that those alarm bells still go off. They might be the very thing that keeps me in remission for a long time.

Note: ANCA Vasculitis 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 ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.