The Realities of Disability and Lupus

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.

7 comments

  1. Shelley says:

    I’ve had lupus since 1992, when I was 22. Initially, I only had minor issues with joint inflammation and a few blood clots. Then I was diagnosed with kidney disease. But it wasn’t until 2009 that I started to have really serious problems. My lupus attacked my nervous system and I developed lesions on my brain stem and spinal cord. That’s when I was forced to go on disability. I’ve been out of work since 2014 and I miss my job. I never thought I would because it was very stressful, but sometimes I wish I could go back to work. I miss the regular interaction with other people the most. I’m single, no children and live alone so loneliness is a problem. I’ve started making more dates with my friends and trying to spend more time with my brother and sisters. I’ve also been working on a business plan for a new business I hope to start early next year.

    • Christine Von Raesfeld says:

      Shelley, I always hate to hear of others in this situation. I know it can be stressful but I am happy to hear that you are taking the time to take care of you. Loneliness is an issue that I also deal with and getting involved has helped that greatly. I wish you all the best on your future business endeavors.

  2. Priscila moreno says:

    I am a divorced mother with a daughter 33years old that was diagnosed with lupus at the age of 14.we are from Colombia but live in Quito, Ecuador.right now she is having a flare…in these19years since she was diagnosed We the parents have not had the best management of her situation. She at this moment is having a very bad depression and does not want to follow procedures. The psychologist says she is manipulating mainly. I just wanted to thank you for your testimonies …at least I do not feel alone…

    • Christine Von Raesfeld says:

      Priscilla, Your story sounds so much like that of my parents. I started having issues at the age of 14 as well. Depression is a very real thing and I hope that your daughter can find some help with this. Is she willing to attend support groups? There is a free nationwide buddy program with the Lupus Foundation of Northern California that can match her up with a lupus buddy. There are also groups online where you as a parent can go to find support and advice in your times of need. I wish you nothing but the best and hope that you all find solace in the fact that you are not alone.

  3. Male Lupus says:

    I was diagnosed with SLE and PsA last year at the age of 45. I’ve had peripheral neuropathy for five years that led to a diagnosis. At age 36 my pituitary failed, which looking back, my Rheumatologist says that was SLE and it was autoimmune hypophysitis. Now I have autoimmune narcolepsy. I’m still working full time and it is challenging. I was told to apply for disability last year, but I can’t quit working. Who will feed my kids? I will have to work until I just can’t. I’m tired, dead tired. But I keep going for my children.

  4. Patricia Henry says:

    Please can you tell me what medication you take.I’m live in South Africa, Durban.I feel so alone in all this a because it is so rare. Dry eyes and mouth. Different doctors say different diagnosis.

  5. Stephy says:

    I am 32 years old. I have post lyme syndrome and sle lupus and fibromyaglia. I am also hyper mobile. They diagnosed me with arthritis and I take methotrexate. My doctors told me to stop working in 2011. I have damaged ligaments, tendons and the joints of an 80 year old. I wake up everyday not knowing what is going to hurt. I have been waiting 3 years for my disability hearing. Not being able to support myself is makes me stressed and depressed. I have kids and I can’t do everything I want to do with them. I believe all of this has just made me a stronger person. Learning lessons of patience and being to appreciate real life.

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