Ask any lupus patient, and they’ll tell you this: the disease does not have a clear timeline and is not predictable. Symptoms come and go. Good days give way to bad ones. A period of relative stability can go on for a while, only to suddenly be interrupted by a flare that derails their entire life without warning.
For people living with lupus, the fluctuation in their symptoms can be exhausting. For those applying for Social Security Disability Insurance (SSDI) benefits, it can be maddening. How do you assert that your condition meets the Social Security Administration’s definition of “disabling” when it is so inconsistent?
The challenge of documenting a highly changeable and varied condition
SSA’s decision makers can struggle to understand how severe lupus can be when it is not visibly active every day. That does not make your claim hopeless – but it can create problems that have to be factored into the application process.
For example, a doctor’s visit might document your condition on a “good” day, when your fatigue and pain are manageable. Lab results can appear stable even when you are suffering from profound exhaustion, joint pain and the ever-present brain fog. Your flares may come and go, but the consequences linger. Your fatigue can persist long after active inflammation is gone. Your cognitive impairments can fluctuate hour by hour. Your pain levels can shift as swiftly as the weather.
In addition, lupus affects multiple body systems – so your symptoms can involve your joints, skin, kidneys, lungs, cognitive abilities and nervous system. When these issues are documented separately and scattered in your medical records, recorded by multiple different doctors, their combined impact on your life and your ability to manage your day-to-day activities can seem diluted to an observer.
That can make it difficult for your disease to be accurately portrayed to your SSDI application’s decision-makers. Ultimately, this variability in your condition can cause your SSDI claim to be denied because the adjudicator thinks that you are functional, even when the sum total of your symptoms makes it impossible for you to engage in sustained work activity.
What someone with lupus can do to bolster their SSDI application
You are not entirely powerless in this situation. You can take steps to better illustrate the reality you experience while living with the fluctuating symptoms of lupus:
- First, talk to your doctors. Many patients do not realize this, but doctors routinely record things that their patients say about their symptoms. Each time you see your primary care doctor, your rheumatologist, urologist, dermatologist and other specialists, mention any related symptoms you have. Describe your pain, fatigue, cognitive difficulties and functional limitations using specific language and concrete examples.
- Second, keep a personal record. A pain or symptom journal can actually be invaluable when someone is dealing with a variable condition. Document your flares and the symptoms you experience, as well as the length of your recovery periods. Note down missed appointments, canceled plans and days spent in bed. These notes can be given to your doctors to become part of your records and help provide context that is lacking in isolated medical visits.
- Finally, focus on the functional impact of your condition. When you file your SSDI claim, do not just give SSA your diagnosis and assume that they will understand what that actually means for you. Take your time with the application and any additional reports you are asked to provide about your functional limitations and describe the problems that you have completing tasks, standing, walking, concentrating, maintaining pace and with attendance.
Ultimately, persistence and good documentation are the key to a successful SSDI claim. Many lupus-related disability claims are initially denied, making appeals necessary. Remember, however, that a denial does not mean that a claim doesn’t have merit. Seeking experienced legal guidance for help with your claim can make the process smoother.