Recently I was discussing earnings with another warrior. I love learning new things, and they often relate to creating income online. This has caused a lot of people to come to me with business ideas they want to take online, or people who want to know how to start earning online. This warrior said she had some skills and thought we could work together to supplement our disability pay. I laughed at her assumption because I do not get disability pay.
This made me wonder how many of us are forced to work when our bodies and our healthcare professionals have told us to stop. I can tell you that the past two years since this diagnosis, I have felt like there is a revolving door on the hospital. My last stay was eight days, and earlier this year when my doctor told me I needed to be hospitalized, I said to him “figure out a treatment that allows me to go home,” and I refused to be admitted.
I said no partially because long hospital stays cause great depression for me, and it took me months to recover mentally from those eight days. The other reason is that I pay for my care out of my own pocket (I lived in Thailand for the past two years, and I fully funded the excellent care I received). When you’re not getting any financial assistance, those self-pays can take a lot out of you. When your body flares, recovery can be difficult, and the last thing you want to think about is how to recover the loss of earnings.
The misconception has been that since I can’t work a traditional job, that disability funds my travel and life, and that I am supplementing it with what I do online. I would love to be supplementing. However, all of my bills and my life are funded by me working from home, so a long hospital stay or a big flare is a financial setback. You either give up a big chunk of income at once or a big chunk of downtime because I can guarantee you that when you are in intense pain, you are not working online or offline.
Many of us battling lupus have applied for disability, and have been denied time and time again. Some try to get help for four to seven years before obtaining approval for disability. While that is going on, they are struggling to keep jobs, and now with many employers adopting the at-will policy, employees can be fired for virtually no reason.
For many of us, who have a revolving door at the hospital, frequent absences are the reason. So, you have no job, an unpredictable illness, and no insurance, and you file for disability and are denied for four to seven years. If you have not started trying to find other ways of earning an income it could mean the difference between paying your bills and living the rest of your days with resentful family members.
In 2008, when I started my first online venture, people used to laugh and ask me about my hobby. Now that hobby has been taking care of me at a time when I’ve needed it most. I would love to have the added income from disability, it would make things less stressful financially, but until that magic number of times denied is reached, I carry on creating online streams of income to take care of the financials in my life.
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.