What I Didn't Expect to Feel as a Full-Time Caregiver


When my son was diagnosed with late-stage neurological Lyme disease three years ago, my family decided it would be best if I left my position as a yoga teacher/therapist in private practice and become a full-time caregiver. This was to give him the best quality of life and chance at remission, as there is no cure for late-stage Lyme, and it can be life-threatening if it progresses without appropriate treatment.

As with so many other special needs parents, my life now revolves around medications, all-day appointments at the IV clinic, doctor visits, special diets and the medical equipment that is scattered all over my house. My world has narrowed down to all things Lyme and remission from Lyme. I am not a doctor, but I am fluent in medical-speak and can now hold my own in conversation with doctors.

When I first left my job, and with it my connection to mainstream American life with its emphasis on individualism/achievement/success/competition/getting ahead, I found it metaphorically difficult to breathe. Like being deprived of oxygen, I felt deprived of my identity as a hard-working professional climbing up the ladder in my field. I had trained, interned, taught my heart out and worked my way up to starting my own business over a number of years. I was now, what? What was I in this culture? When you tell people you’re caring full-time for a family member going through a longterm health crisis, they ask what the illness is and then proceed to tell you about their cousin who had that and recovered using this incredible new fad supplement. Then they politely excuse themselves to talk to someone with whom they have something in common.

Although I’ve always been an idealist and believed in serving others, and was a professional caregiver, the thought of giving my hard-earned career up to do unrelenting work with no pay, no benefits and no respect did not sound all that attractive. In my job I took care of others but got paid to do it and got a lot of respect and social currency from my position. When I talked about what I did socially, people always fawned over what I achieved. I never realized how much I depended on that type of status until it was gone.

As all special needs parents likely know, the look you get when you tell people you’re taking care of your family member full-time — that look of pity, while the person says, “Oh I could never do that. You are so brave/patient/loving/compassionate/fill-in-the-blank” — can make any self-respecting, high-achieving person want to vomit.

But after six months of fully immersing myself in the role of caregiving, something surprising happened. I stopped missing the grind, the constant running around and trying to complete all the tasks, the insane multitasking, the lack of sleep, the worry that I was forgetting an appointment/medication/consult, and the addiction to busyness. After I stopped obsessing over all these things and started to relax, that’s when it happened. I was able to pay attention to the world around me and connect with others with a depth, honesty and availability I had never experienced before. I was genuinely interested in the whole of the world around me, and not just the easy and fun parts.

This is not an essay extolling the gifts of illness. Serious, chronic illness sucks, and if my son ever gets into remission, I will be over-the-moon ecstatic, but I will not return to the values and lifestyle I had before, nor will I ever go back to the superficiality with which I used to conduct my life. As a caregiver, I’ve found a way of being that is so much deeper, so much more authentic than what I ever experienced before. 

Being a caregiver has helped me realize the possibility and potential of what I am truly capable of — the width, depth and breadth of myself — and I can finally breathe again.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.


Find this story helpful? Share it with someone you care about.


Related to Lyme Disease

To the People Who Think It’s OK to Touch Me or My Wheelchair Without Asking

I was faced with one of the most awkward situations I’ve experienced yet, and that’s saying a lot because I always seem to get in the middle of awkward situations. A stranger legitimately went out of his way to touch me on the shoulder as I was trying to drive down the street in my [...]

I Made a Video to Show What It’s Like to Have a Brother With Autism

This is a short video I made about what it’s like for me to have an older brother with autism. I hope you enjoy it and see how blessed I am to have Mitchel as my brother. I love him to death, and I want everyone to see how awesome our bond is. Below is an [...]

Robin Williams' Wife Breaks Silence on 'Monster' Disease He Was Battling

Robin Williams’ wife Susan Williams has given her first set of interviews since the beloved actor’s death. Williams spoke with People magazine and explained that only after her husband’s passing were doctors able to determine what was going on with his body and his brain. “It was not depression that killed Robin,” Williams told People. “Depression was [...]

When the Most Beautiful Woman on the Beach Was a Special Needs Mom

The weather app on my phone clearly stated it was going to be cold and windy at the beach that day, but I was sitting on my sweatshirt and rolling up my yoga pants to keep from dying of heatstroke. A group of college girls walked by in bikinis. I rolled my pants back down, consoling myself on [...]