How I Stopped Letting Work Define My Worth After My Chronic Illness Diagnosis

Up until 2015 I was a career professional with name notoriety. When I picked up the phone, important people answered. My work was easily accessible by a Google search. I even had my own IMDB page.

But then the illness hit.

Overnight I went from a working woman to a woman whose body wasn’t working. And within a few short weeks of falling ill, it became apparent working professionally just wasn’t going to work anymore.

I was still alive, but I’d lost my life. All that was left was to try to build something useful out of the broken pieces…

Or so I thought.

Recently I’ve been pondering the “worth” of my long-since limited life. I can’t write like I used to, lead a newsroom like I used to, run a film set like I used to. To date, I haven’t even been able to hold down part-time employment because my symptoms are too severe.

So if I can’t produce like I used to, where does my worth lie?

I’ve spent the four years since 2015 feeling that because I could no longer contribute to society in my old ways, I had no worth at all. But recent weeks have shown me this could not be further from the truth.

Friends, so many of us look at our limited lives this way — but it’s these viewpoints, not ourselves, that are limited. And limited viewpoints mean we don’t see the whole person.

Let me say it plainly: You are infinitely more valuable than your illness and your pain. Even if all you managed to “accomplish” today was brushing your teeth, you have value. Immeasurable, undeniable value.

You are not a burden on those who love you.

You are not lazy or selfish or an impediment.

You are not worthless.

This shift in tone is recent for me, and please believe me when I tell you it was imperative that I make a change. My inner monologue since 2015 has been one of relentless bullying and despair. Because I could not bully my body into getting better, I instead bullied my mind, repeating mantras of my uselessness.

But I am not useless.

And neither are you.

Change isn’t coming easy for me, but it is coming, and I’ll tell you how I did it. And you can do it too.

1. Find a chronic illness accountability buddy. Because I could not summon positive thoughts on my own, I found a friend who’d mastered the art and I asked for her help. Yes, that’s right— stubborn, relentlessly independent me reached out for help. And my friend agreed to provide it. We now check in with each other every week and share resources we’ve found to keep each of us in a hopeful headspace. Which brings me to point #2…

2. Resources. Don’t tell me you can’t find them. If you’re reading this, you have the internet, and therefore your options are endless. Even if you can’t leave the house, major retailers will deliver books to your door. If you’re like me and your vision was affected by your illness, audiobooks are amazing and you can get some for free (books too) with your local library app. And there’s always YouTube videos, lots and lots of YouTube videos. Lately I’ve been inundating myself with YouTube healing meditations, and it’s awesome.

3. Online groups. Chronic illness groups are everywhere and can be a great place to find your chronic illness accountability buddy or new ideas for treatments or ways to more productively spend your time rather than lamenting your limitations. For some, groups can be intimidating or triggering, and if a member is pressuring you to try some rare berry that only grows in Botswana in April to cure your disease, you may want to forego the groups in favor on #4.

4. Disease-specific organizations. Nowadays there’s a non-profit or research group for pretty much any disease you can think of. Google them and then send an email, call or join the message boards. Reach out to others who can sympathize with your struggles and connect with experts (many organizations have disease specialists on their boards) who can point you to some areas of hope you may not yet be aware of.

5. Volunteer. Whether you’re able to leave the house or not, there are thousands of organizations out there that could use your special talents. Maybe you can do a few hours a week at a local animal shelter or volunteer at a food pantry. If you can’t leave your house, perhaps you can donate to the food pantry or crochet blankets for the homeless shelter. Meet the needs of another. I’ve found that for me, nothing feels better.

6. Reach out. Chronic illness can be so isolating, and isolation is depressing. Any form of human contact, whether meeting a friend for coffee if/when you’re able, or even just the weekly check-in with your accountability buddy makes the world feel a little less lonely. If no one comes to mind, see numbers 3 and 4 above. There are always options. Don’t give up!

7. Share your gifts. Each of us is good at something. Find a way to do your thing. I recently saw a man with ALS in a wheelchair, fed by a tube. As he could no longer paint in his preferred way (with his hands, intricately, on canvas), he found a way to work around this. Now he places canvases and paint on the floor, and rolls his wheelchair around in them to make beautiful designs. He’s still painting, and it brings him great joy.

A friend recently told me happiness is fleeting, but joy comes from within and nothing can take it from you. That friend had a massive stroke 10 years ago and is still paralyzed on her left side, yet she is one of the most joyful people I know.

I want that.

I want you to have that.

There are perfectly healthy people on this planet who are miserable. As members of the chronic illness community, we may have more reasons to be miserable than most, but friends, every day is not a misery. Every day is a gift — even if that gift didn’t come in the package you wanted. 

We may need help to see the good, and that’s OK.

I’ve finally come to a place in my life where I can ask for help and am ready to receive it.

I don’t know why I waited this long. It’s bringing me joy, and I’m worth it.

And so are you.