A woman with lupus sits hunched over against a large box of office desk supplies including a wilting plant, binders, pencils, and a calculator.

Deciding To Go On Disability & The Depression Aftermath, Part 1

As a kid, everyone has dreams of growing up and doing what they love in life. If we are lucky enough to live out this dream, it’s an amazing accomplishment. For years I went to college, received 2 masters, and worked my dream job in corporate America. I was even able to become a professor at a college, all while afflicted with lupus. I worked so hard, in fact, I feel that I may have worked harder than most, considering I had lupus since I was a young child. There were no excuses in my world. I was going to fight to have a good life, lupus or not.

I was my own woman. I supported me. I was single and wasn’t going to lean on anyone. This is a great accomplishment especially living with chronic disease. The feeling of not needing anyone.

Exploring disability with lupus

One day, I woke up at 39 and I thought, geez, I do not know if I can do this anymore. My days got harder, work mistakes started appearing, and coworkers started to complain. My boss was highly aware of my condition, but it did not stop workplace harassment. I would receive notes on my desk, “Where are you?” and “What do you do all day?” Instead of my boss supporting me, I had to let everyone where I was and my whereabouts. I wish I had known more about working with a disability then. Stress was high. My doctors warned me that with increased stress from work, increased infections, and multiple surgeries in 3 years, that my body was done.

Physically, I was done too. Mentally, I could not come to grips with what was happening. Losing the core of who I was – my livelihood. This thought of loss was met with grief, but I had no choice. It was time: Time to go on permanent disability. Thankfully, I was newly married, and my husband was by my side for this new journey.

In retrospect, I found myself going through the different stages of grief: anger, bargaining, depression, and acceptance. Depression was the longest stage for me, and it lasted over 3 years.

Anger, the first step to grieving

What do you mean I’m done?

The day came. I applied for short-term disability to begin the process. Walking out of work that day, I was sad, relieved, but mostly angry – Angry, because I did not work this hard to just let it all go, not now, not ever, I thought. I have been battling lupus since I was a child. I gave up, I thought.

Plus, on top of it, I would now only be making 70 percent of my salary. And shortly thereafter, I would not know where the money would come from. Would I even get social security at my age?  I was angry I did not set it up better and pay into the extra disability plan. But disability is not something you really plan for it just happens. Like a carpet being pulled from under you.

I was angry all the time. So much so, my new spouse noticed. In my mind, I was giving up a part of my life. It was not willful. It was because I had no choice. Who would I be without what I built for me? The anger carried over into regular life. Mad I had lost my life, friends, routine slowly translated in being angry about life, the kids, and the animals. In retrospect, I should have gone to therapy. I was grieving and did not know it. If you are deciding whether or not to go on permanent disability, I would recommend talking to a professional to help guide you through it. Disability was a large change that I found affected me more than you know.

Then came bargaining

One day, it becomes clear and it all came to a head. Life is forever changed. As short-term disability turns into a long-term disability after 3 months, the permanent choice comes. Go back to work or stay? Per the guidance of my doctor, there was no choice. Long-term disability would give me the opportunity to apply for permanent disability. But in the back of my mind, there was a chance to return, I could work from home, I could work adjusted hours, I could...

In reality, there wasn’t an alternative. The reality is that days would pass that I could not even get out of bed. There is no way I could hold a job realistically. It was time to move on.

Come back soon for part 2 of this 2-part series.

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