The Realities of Disability and Lupus

At the age of 28, I was diagnosed with a severe case of lupus. In addition to the renal effects, my lupus began to attack my central nervous system, including my brain. My cognitive function, memory, and mood were greatly affected and made it difficult to do my normal job. I had gone from working 50+ hours per week to barely making it in. I was being hospitalized more often under the stress of the job. The day-to-day of working was sending me into frequent flares and things were getting more complicated with my disease.

Six months later, I was advised by my doctors that it would be in my best interest to stop working. As someone who took pride in my job and work ethic, I was devastated. I felt lost at the possibility of not working. After all, I was only 31. Most of my friends were just coming into their careers and mine was coming to an end.

The reality of disability

The feelings associated with having to go on disability are complicated, but they are even more complicated when disability happens later in life. There is a feeling of inadequacy when going from being a fully functioning adult to someone who can barely support herself. Many experience a feeling of loss when they are no longer able to work. Losing the socialization of a job also has a huge impact and can sometimes lead to depression.

The stigma of disability

There is a stigma about being on disability that you will never know unless you experience it. Many people believe that those of us on disability are “lazy” and looking for an “easy way out.” There is a belief that we have given up or have failed in life when in reality we are fighting for our lives every single day. We are not lazy, but are doing our best each day.

The emotional toll these erroneous beliefs have on a patient can be devastating. They often can lead to feelings of depression and inadequacy. Many don’t realize that the comments they make can deeply affect us. While they may never understand, it’s important to know your own self-worth.

One thing to remember is that you are not alone in what you are going through. The feelings that you have will be temporary as you learn to accept your new normal. Try to find other activities that can help you with your feelings of self-worth. Finding other outlets can help you to deal with your new identity and to avoid depression during this adjustment period. What activities or things have you done to help deal with the realities of disability?

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Note: Lupus News Today 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 other 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 Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.