Getting an autoimmune diagnosis is life-changing in almost every way. Your future can go from looking clear and bright to fuzzy and dark. Not only do patients have to navigate new symptoms, frequent doctor’s visits and test but they also have to figure out if and how they will continue to work. Deciding to apply for disability is never an easy decision and the process doesn’t help!
When to Consider Disability
Most of the time, the question of disability comes up when people are first diagnosed with an autoimmune disease like RA or Lupus. When you’re first diagnosed, you’re often feeling quite ill because you’re not yet on any treatment. Things can get clearer once you know what you’re dealing with and have a treatment plan, but very few treatments work overnight as it can take months for inflammation to calm down.
Temporary disability may be the right decision for you as you focus on getting healthy. The conversation with your doctor will depend on the condition, how sick you are, and the treatments you’re considering.
Understanding Disability Options
Private Insurance
Private insurance disability policies are one option. These are insurance policies paid for by either you or your employer and provide a percentage of your income during the time you are deemed disabled. Each policy can vary substantially so it’s important to understand the specifics of your policy, which you can usually get from your employer or HR department.
Federal Programs
There is also a federal safety net program, SSDI (Social Security Disability Insurance). To qualify, you need to be deemed disabled and have a long enough work history. If you qualify, you get a monthly stipend based on where you live and your work history and access to Medicare if you are in the program for 2 years. There are exceptions and caveats, so it’s important to do your research.
State Programs
Some states have their own disability programs, including California, Hawaii, New Jersey, New York, and Rhode Island. These provide financial benefits if you qualify.
FMLA
While not a financial benefit, the Family Medical Leave Act (FMLA) provides job protection. If you qualify for FMLA, you can request leave from your job for health reasons (or to care for an ill person) without fear of losing your job.
Getting Prepared
Each policy and program is different and will require something different from you and your doctor, so organization is key. Take some time to see if you would benefit from a disability lawyer. They can help manage the paperwork and follow-up, which can get overwhelming quickly.
Get copies of all the policies available to you and review them with your HR rep. Read up on SSDI requirements and any state programs available. If a lawyer isn’t an option, see if a friend or family member can help you stay organized.
Talking to Your Rheumatologist
Your doctor is a critical part of the process, but they’re only one piece of the puzzle. Before bringing it up with your doctor, do a self-check. Are you unable to work due to your autoimmune disease? Could workplace accommodations help, like a standing desk or flexible hours? If no accommodations seem possible, it’s time to have the talk.
You want to ensure you and your doctor have enough time to really discuss this so it’s best not to wait until the end of the appointment. In fact, it’s a good idea to give your doctor a head’s up through a portal message that you will want to talk about disability.
When you meet, be clear and specific about your difficulties. Ask questions about how long it will take to not only be feeling better, but be feeling good enough to perform your work responsibilities. This is helpful to start to creat goals for your treatment.
If your doctor is hesitant, stay calm and ask why. Understanding their perspective can provide insights into your condition and guide your next steps. If necessary, seek a second opinion to ensure you’re getting the support you need.
Getting a new autoimmune diagnosis is overwhelming, and managing work or considering disability can add to that stress. Being informed and organized is key. Open up the conversation with your doctor early, and don’t assume they know all the ins and outs of your policy or the SSDI program.