Measuring self-worth shouldn’t be solely based on a job
Living with Friedreich's ataxia is full-time work
I am often asked a familiar but bothersome question: “What do you do all day?”
When I hear this question, I instantly feel abysmal. It has never been asked with any intention of making me feel flawed, but it does. I feel like I have to take inventory of everything I do during a given day in order to respond.
Because of my disease, Friedreich’s ataxia (FA), for the past 13 years, I’ve been able to work only contractually here and there, but not full time. I’ve been symptomatic for nearly half a century and was diagnosed 41 years ago. I’m certainly not the only one with FA who is unable to safely work, and I’m fortunate that my husband, who is a teacher, supports me. But we aren’t rich.
The nagging question
The subtext of this question is often “Aren’t you bored?” It’s sometimes expressed with jealousy, such as, “I wish I didn’t have to go into the office every day.” My inner mean woman might want to reply, “I wish I didn’t have to wake up sick every morning for the past 45 years.”
I wouldn’t say that, of course, but perhaps I should in order to be totally honest. Instead, I usually reply with a rambling list of what I do every day.
Having a rare disease is a full-time job. There are doctor appointments, frustrating phone calls with health insurance companies, testing, clinical trials, exercising, eating right, and more.
Did you know that it takes me two or three times longer than it takes a healthy person to accomplish my personal care routine, such as taking a shower and getting dressed?
Like many of us with FA, I do other things, too, such as volunteering and advocating for new treatments and a cure.
If I’m not careful, not having a full-time, paying job could make me feel like a failure. I must be diligent in telling myself that FA is what robs me of full-time employment, not laziness.
As someone with a master’s degree in social work, I have learned to view people within their own societies, which entail particular cultural norms. In the U.S., where I live, people are hyperfocused on what you do for a living. It’s often the first question people will ask upon meeting you. I have internalized this, and it’s why I feel small when I’m asked what I do all day.
I think it’s probably part of the reason why many people, myself included, have difficulty with self-care. I don’t know anyone who gets paid for taking a yoga class or going on a nature walk. The assumption seems to be that if you’re not getting paid for something, it means you aren’t busy.
My days are indeed full of activities related to FA and self-care. I will continue to work on moderating my feelings when I hear that nagging question, because I deserve to give myself grace. I hope you can give yourself and your loved ones grace, too.
Do you have FA? Are there certain questions that bother you, too? Please share in the comments below.
Note: Friedreich’s Ataxia 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 another 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 Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.