Living with systemic mastocytosis (SM) can make daily life unpredictable. Flares may appear without warning — from rashes and flushing to dizziness, fatigue, or severe allergic reactions. When these symptoms interfere with your ability to work, applying for disability benefits can help you focus more on your health and stability.
How systemic mastocytosis can affect work
In SM, too many mast cells build up in different organs and release chemicals that trigger widespread reactions. Symptoms can appear suddenly from everyday triggers such as temperature changes, foods or stress. For many people with SM, this can make it difficult to maintain a consistent work schedule or perform regular job duties.
If your symptoms have persisted for at least 12 months and prevent you from working full-time, you have the right to apply for Social Security Disability Insurance (SSDI). SSDI is a federal program run by the Social Security Administration (SSA) that provides monthly payments to people who can’t work because of a disability. Applying is far from throwing in the towel: It is advocating for your health and well-being.
All forms of SM — even indolent or “milder” types — can qualify for disability if your symptoms are truly debilitating. The SSA automatically approves mast cell leukemia (the most severe subtype of SM) under its Compassionate Allowance program, but other SM subtypes require detailed medical proof of how your condition prevents steady work.
Preparing strong medical evidence for SSDI
Before you apply for SSDI, you and your doctors will need to thoroughly document your history with SM. An important distinction to keep in mind is that the SSA is not questioning whether you are living with SM; they are looking for evidence that SM has consistently impacted you to the point of being unable to work.
Influential evidence to include when applying consists of:
- Doctor’s notes and hospital records (especially emergency visits for anaphylaxis).
- Lab results such as tryptase levels and biopsy reports.
- Statements from specialists explaining how your SM limits daily life.
- A supportive letter from an an immunologist or hematologist describing the unpredictable and disabling nature of your symptoms.
- A Functional Capacity Evaluation (FCE) completed with a therapist to measure work-related limits such as standing or lifting ability.
In addition to clinician documentation, your own records will be pivotal in your journey to obtain SSDI. Keep a symptom diary to track every severe day, like when a flare requires an EpiPen, fatigue keeps you in bed or dizziness makes driving unsafe. These personal notes demonstrate how often symptoms occur and how they interrupt daily life.
Lastly, be sure to follow your treatment plan as best you can and document compliance. If your symptoms persist despite proper care, this can help prove the condition’s severity.
Navigating the SSDI process
You can apply for SSDI online or in person at a Social Security office. Expect to provide details about your work history, medical evidence and daily challenges. Initial review usually takes three to four months and may include an evaluation by an SSA-appointed physician.
Don’t be discouraged if you’re denied at first; the harsh reality is that roughly 70% of applicants are. Most successful cases go through the appeals process. If you receive a denial, you have 60 days to request reconsideration. If denied again, the next step is a hearing with an Administrative Law Judge. Many rare disease cases are finally approved at this stage, once the judge can review evidence and hear your story in person.
Read about SM Companion ambassador Tara Keith’s journey to getting disability for indolent SM
Finding help and support
Filing for disability can be emotionally exhausting, but help is available. Disability attorneys often work on a contingency basis, meaning they only get paid a small percentage of your back pay if you win your case. An experienced lawyer can gather medical evidence, obtain statements from your doctors, and prepare you for a hearing.
So remember, victory loves preparation. Stay organized by keeping copies of all forms, letters and records. Applying for disability takes strength, perseverance and careful preparation, but the benefits for your health and daily life can be worth it.
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