When I Feel Guilty That I'm Not 'Enough' for My Family With Chronic Illness

I have moved slowly my whole life. I have been called a turtle, among many other things. I rarely feel the need to rush, and my lifelong anxiety prevents me from acting quickly even when I try.

I was always one of the slowest runners at school, and the slowest walker on the crowded streets of New York City where I grew up. I cook slowly, I eat slowly and I get ready slowly. I think slowly, and right now I am typing this blog slowly.

It has always taken me longer than others to get most things done. I was glad when I met husband that this didn’t seem to bother him. My turtle pace was just fine with him.

When we had kids it was hard for me to keep up with hungry babies, fast-moving toddlers, and now busy young children. I adapted and kept up the best I could.

Then I was bit by a tiny tick and developed Lyme disease. Added on to my already full plate of anxiety, interstitial cystitis, fibromyalgia, premenstrual dysmorphic disorder, endometriosis, vulvodynia and slow-moving turtle syndrome, I felt completely overwhelmed. It felt like I was caught up in a never-ending cycle of chronic illness.

How would I get anything done now? How would I get through this?

Slowly. One day at a time.

Lyme disease completely took over my body and brain for awhile. I have improved about 50 percent over the last three years thanks to my doctors and antibiotics, but my brain is still affected, and it is difficult to remember certain things.

There is no cure for chronic Lyme disease, so I continue to fight, and move even more slowly. The waves of Lyme haze run through my brain, and I still struggle to be set free.

There were many days when the guilt of not being enough and not doing enough for my family was crushing. There were many days when I didn’t have the strength to cook or even take a shower, let alone play with my children.

This guilt followed me around like a shadow on the ground, the writing on the wall — until I decided to stomp all over it and write a new story.

In this story, it is OK to be a sick, extremely slow-moving turtle. I still have worth, I still am able to give and receive love. I strengthened my shell, I developed new goals. I have a new outlook on life.

I decided to feel beautiful inside and out, even though I looked disheveled on most days. I decided to tell my family I love them at least twice a day. I decided it was OK to plan one fun thing a week for me and my kids to look forward to. I decided to try hard to brighten other people’s days, or to help others more when I am able to, through my writing and other avenues. I decided that was enough, and I was enough.

Though I can’t do as much as I used to since my turtle power is low, I have learned to cherish all that I can do.

All of us move at different speeds. All of us are facing many difficult trials and tribulations. All of us are part of the human race.

We don’t have to win it, we just have to consciously and compassionately be in it.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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