Disability benefits and supplemental security income (SSI) can act as a financial “safety net” for people with severe symptoms of lupus.
Lupus brings large bills for medications, treatments, and lab tests. It also makes it harder to work full time. The financial realities of living with lupus can force choices upon you. Should you pay for a particular treatment or the phone bill? Disability benefits are designed to help.
Disability benefits are a stipend that the government provides to people who, due to illness or injury, can no longer perform their job in a normal way or earn a living wage “for a duration of 12 months.” It is intended to act as a “safety net” of sorts for workers and their families. SSDI and the very similar supplemental security income (SSI) can be a lifesaver for people with lupus. In theory, these benefits allow people to afford the basics of food and shelter each month. Depending on the costs of living where you are, this can be plenty or it can be a shoestring budget. But it is far better than nothing and it can make a big difference.
Preparing for the battle
If you have lupus (in particular if you have systemic lupus erythematosus) you likely have experienced pain and stiffness in your joints, fatigue, weakness, and even organ damage. All of which can affect your ability to work and earn a living wage. If your symptoms are severe enough to affect your work, then you may be eligible for disability benefits.
However, the Social Security Administration are the ones that will determine this, and they can be very picky. As Charis Hill, a chronic disease advocate describes it in her blog post on The Mighty, the process can feel dehumanizing, humiliating, and even invasive. They pick apart your application and your life. It can also take years to process – and even then, at the end, the SSA rejects most proposals.
Many people become discouraged – but persistence is key.