Being labeled as disabled comes as a bit of a shock every time I hear someone refer to me that way. Living with a debilitating illness like MS for 20+ years you try to prepare yourself mentally and physically to face whatever challenges that may arise including in my case, acquired invisible disabilities. Still, that didn’t prepare me for how disability stigma impacts self-esteem.
What is a disability?
According to the CDC, a disability is any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restriction).
There are 8 main types of disabilities including:
- Cognitive/ learning
- Brain/head injuries
- Spinal cord
Disability stigma impacts self-esteem
Stigma is when someone is defined by their illness rather than who they are as a person. People with disabilities are stigmatized by among other things, negative stereotypes. For example, people with disabilities are needy, weaker, always sick, unable to think or care for themselves, or lacking in some way. These attitudes are not only dismissive of people with disabilities but they are harmful and undermine self-confidence, self-esteem, and self-worth.
I have a disability- what’s it to you?
One of the first things that happened to me when I was approved for disability benefits was instant labeling. It was like being diagnosed with MS all over again. I went from, “She has MS” to “She’s on disability.” It’s like you suddenly have a new identity that you didn’t ask for and don’t want.
The second thing that happened was the sudden interest in why I couldn’t work. (Because I looked okay to them and they know people much worse off than me) It’s appalling that people think it’s okay to question and judge you when they have no idea what they are talking about. I’ve actually had people tell me what kinds of jobs they thought I should be able to do based on nothing other than their opinion. It’s as frustrating as it is humiliating. Why don’t I work? I have a disability, what’s it to you?
Disability stigma impacts self-esteem making you feel less deserving
While I was working most people didn’t notice or recognize the struggle I faced on a day-to-day basis. However, once I was officially receiving disability benefits, suddenly all of my actions and activities were in question:
- “Couldn’t you have pushed through a little longer?”
- “Can’t you just work fewer hours?”
- “Why don’t you just get a different job?”
- “But you were able to exercise/go to a party/cook dinner/go food shopping; so why can’t you work?”
These sort of judgmental negative comments make you start to question yourself and you think:
- Am I doing something wrong?
- Did I not try hard enough?
- Does someone else need my disability benefits more than I do? (For the record, that’s not how it works.)
It’s hard not to feel defensive when people are outwardly judging whether or not they think you are deserving of your disability benefits. Sometimes it feels as if they think it’s a handout that they are somehow paying for. It’s not and they’re not.
FACT! Social Security Disability Insurance is not welfare. It’s a benefit that you paid for through your social security taxes.
“The SSDI program pays benefits to you if you are “insured.” This means that you worked long enough – and recently enough – and paid Social Security taxes on your earnings.”1
Disability is not a choice but judgment is.
- “I wish I could stay home all day.”
- “I wish I could do nothing all day.”
- “What do you do all day?”
- “Why are you so busy? You don’t work.”
- “Why are you tired, you don’t work.”
- “What do you mean you don’t have time? “You don’t work.”
- “I’m sure you could work if you wanted to.”
- “It must be nice not having to work.”
No. It’s not. In fact, if it’s not what you want for yourself then it sucks. To be clear, many disabled people can and do work and have long and successful careers. What I’m talking about here is when you lose the ability to work and are forced to leave the workforce. Choosing not to work is one thing. Not being able to work is another thing entirely. Not because you don’t want to work but because you can’t. What do I do all day? My very best.
Are you still relevant?
Not being able to work can make you feel like you’ve lost part of your identity. Not only do you lose your ability to substantially contribute to household funds, but you can potentially lose the relationships you’ve built over the years. In addition, many people define their self-worth through their accomplishments on the job and have to evaluate what this kind of loss means to them and figure out how to move forward. It all takes a toll on your self-confidence and self-esteem while you worry about what you still have to offer. You begin to wonder:
- Am I still relevant?
- Do I have still anything to offer?
- What am I going to do now?
- Do I still measure up?
- What worth do I have now?
Are you worthy?
Let’s talk about self-esteem and self-worth. Self-esteem is what we think and believe about ourselves based on external factors like personal achievements as well as other people’s opinions and how they react to us.
On the other hand, self-worth is the value you place on yourself based on who you are as a person. You know that you’re a good person who deserves good things and that you matter. You believe that the things that happen in your life won’t change that.
The dilemma here can be that even if you normally have a good sense of self-worth, having to deal regularly with disability stigma and all of the negative connations attached to being disabled can significantly impact self-esteem and leave you feeling less than worthy.
What do you do? The self-esteem killing question
People place a lot of value on what other people do for a living and when you leave the workforce permanently this can make you question if you’ll still be the same person you used to be. After all, the first question new people always ask is, “What do you do?”
Even when I worked I thought this question was an obnoxious way to break the ice. It always felt like a gauge to learn who was interesting enough to talk to. After I could no longer work I found this question was the number one way to make me feel self-conscious. Still not comfortable with my inability to work, I’d freeze at introductions while I fumbled for an answer like it was a trick question.
I’m sure I made people just as uncomfortable as I was until one day my husband commented, ” She’s a blogger and a health coach and runs a support group for people with MS.” It was an epiphany moment for me because I realized I had been telling people what I didn’t do rather than what I did do.
Once I recognized that I was allowing myself to feel self-conscious because of unresolved feelings I had about not working, it helped me to see that this question really was just a conversation starter and not the self-esteem-killing question that I had given it the power to be.
Invisible disability stigma impacts self-esteem and causes self-doubt
It is estimated that 10% of people in the U.S. have a medical condition considered a type of invisible disability. People don’t understand what they can’t see and will often be dismissive of invisible symptoms and disabilities or even downright hostile about it. Not all disabilities are obvious but that doesn’t mean a person is ‘faking it’ or taking advantage of the disability benefits system.
Even some people in the medical field who should know better are guilty of wrong assumptions and judgment here. Often people living with invisible symptoms feel like they are not believed or their concerns are invalidated at doctor appointments. I once had a second opinion doctor who actually wrote in a report that he thought I was exaggerating my walking issues. Meanwhile, I had previously fallen down a flight of stairs and had broken my back. I went to this guy for help and he acted like I was making it up. It was devastating. After my concerns were dismissed it took me years and many Urgent Care trips to bring balance and stability issues up again.
When people say to me that I don’t look disabled enough to be on disability, how is that supposed to make me feel? Should I be insulted? Should I thank them? Mostly, it just makes me feel sad that there is such a lack of understanding or even awareness of the disabled community and people living with chronic diseases in general. The apathy wears you down, makes you start to doubt yourself, and over time can really do a number on your mental health.
How disability stigma impacts self-esteem
For some reason, many people think because you receive disability benefits that it means you shouldn’t be doing certain things, especially anything physical or taxing. Not being able to work doesn’t mean you are not allowed to have fun or have a life. It doesn’t mean you are not capable of doing other things. It just means you can’t work.
What others think of us shouldn’t matter but it does. Having people make assumptions about you or judge you unfairly because you are disabled or receive disability benefits can make you feel devalued. How others treat us or react to us can make us question how we feel about ourselves, leading to self-doubt and significantly impacting self-esteem.
What we believe is what we become
I really don’t like labels and do not think of myself as disabled or not disabled. I just think of myself as the same person I always have been but with some limitations and conditions that affect my everyday living. Living with disabilities has definitely affected how I live my life but I refuse to let other people define who I am, with or without disabilities.
Disability stigma impacts self-esteem but what we believe about ourselves is equally as powerful as it influences feelings of self-worth. Our beliefs can be transformative or detrimental to our well-being; self-limiting or empowering. What we believe is what we become.
Have you had to deal with disability stigma or stigma from being on disability? What happened? How did you handle it? Please share your experience in the comments.
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