Nurturing Self-Worth When You're Not Working Due to Chronic Illness

Patient Expert

“What do you do?”

It is often one of the first questions we ask of someone we haven’t met before, part of categorizing each other and finding common ground. What we do is an integral part of our identity and how we assess our own worth and, let’s face it, the worth of others. It is not just what we are, it is who we are.

But what if chronic illness prevents you from working? When this important part of your self-image and self-esteem is no longer there, it can have a profound impact on how you see yourself. If you don’t work, don’t contribute, don’t provide, what are you? Are you worth anything or nothing at all?

These kinds of thoughts can play havoc with your mind and soul. But work is not the only thing that gives us value — far from it.

My story

As I mentioned in a post about returning to the workplace after an absence, I didn’t work for a long time. Ten years, in fact. In a sense I’m lucky — because I use a wheelchair, most people assume I don’t work, so I didn’t encounter too many strange looks or comments. But I did struggle tremendously with feeling fairly useless. And I know I’m not alone in this.

Healing that gap in your self-identity takes time and work and possibly talking things out with a counselor. But it is possible to reassess who you are and start seeing your life from a different perspective. This also helps when you get those strange looks and comments.

Chronic illness is work

It may feel like you’re not working, but trust me, you are. Having a chronic illness is a full-time job.

It starts with constant assessment of your energy levels and how they affect what you can do. Then comes being aware of your pain levels and juggling medication. These types of tasks require a lot of mental energy. Then there are doctors’ appointments and tests, battling insurance companies, doing the exercises that keep you moving, researching information about your illness, and so much more.

This all takes as much energy as working full time and then some. Because it is a 24/7, 365-days-a-year type of job. And there are no vacations. But if you do find a way of negotiating a few days off, please let the rest of us know!

Service to others

You may not be able to work for pay, but you’ll likely find other ways of keeping busy. This may involve some form of service to others, such as volunteering in the community, or looking after children and elderly parents. For many of us, it also takes the form of advocacy about our chronic illness. Online, we write blogs and share information on social media. In “real life,” we participate in fundraising, conferences, and advocating with lawmakers.

None of this adds money to our bank accounts, but it does add meaning to our lives. In fact, we may be able to do this advocacy precisely because we are not spending what little energy we have on working in the traditional sense.

Finding value in what you do

Work is valued so highly in the U.S. that anything else we do pales in comparison. But take a closer look at all the things you do and think about the value they have. If you had to hire someone to deal with all the intricate tasks of managing your chronic illness, how much would it cost? If you’re caring for another person, think about how important your love is to them. And what about advocacy — could someone who didn’t have your chronic illness do it as effectively?

So much of what you do is more important than working. Your daily life requires the skills and compassion that are unique to you. To say it bluntly, when you left the job you had, your employer replaced you. But in everything you do in your daily life, you are irreplaceable.

And that is far more valuable than a job title.

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Lene writes the award-winning blog The Seated View. She’s the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain_. _