Many people (including myself) struggle to define endometriosis as a disability.
It is a hard to label to swallow, especially if you have not grown up being disabled.
Keep in mind that I am not someone that actively fights for a disability label to be put on endometriosis. I know that there are people who have much more debilitating and painful diseases and conditions than I do. Part of me feels like I do not deserve accommodations for my chronic pain because I have the mindset, “it can always be worse.”
However, endometriosis is a disability.
The Endometriosis Network – Canada
The Social Security Administration does not regard endometriosis as an impairment, but there are still a multitude of disability benefits a citizen can apply for. Not many long-term diseases and conditions have the SSA label of “disability” because of the various ways chronic conditions can affect people (endometriosis.net). However, I know firsthand that endometriosis can affect women’s function during everyday life.
My sophomore year of high school, I had missed 18 days of school. When I was at my worst during junior year, I missed over 30. When I did make it to school, a lot of the time was spent in the nurse’s office or in a safe, quiet classroom, just trying to survive through a school day with flare ups.
At this point, my parents and I did not know what rights I had regarding disability benefits and access to help with my education. Luckily, I attended a small private school, so they were very understanding as I tried to handle life with chronic pain. However, there are options for women to take if they undergo the same experience as I did.
- You can create an educational plan with your school. The more accurate information the school has, the better. This will allow you to access breaks throughout the day, excused absences, and understanding for so many doctor’s appointments throughout the school year. Allowing the school in on your health journey can allow for compromises and simply educating an institution on a disease rarely talked about.
- Identify yourself as a student with a disability. This is the way to access the most accommodations. The Americans with Disabilities Act (ADA) “prohibits discrimination against disabled Americans and ensures they receive equal access to public services like higher education.” By proving your disability with the correct paperwork and meeting with a representative for disability services, the institution you are attending can create a holistic plan to allow you to have the most successful and inclusive access to education.
If you have debilitating pain, you should have access to accommodations surrounding education and work. It does not help anyone if you sit in silence, struggling with the pain on your own. You are not providing your best work, and nobody deserves to suffer without help or an understanding support system. However, there is a large stigma attached to endometriosis, especially since it is a disease that only affects people with uteruses. The legal and medical community should work much harder to have endometriosis be officially recognized as a disability.
I am not the only woman that experiences struggle with everyday life due to endometriosis. Many women struggle to make it through workdays, school, and daily life tasks. However, there is access to so many resources regarding pain management and healthcare.
If you need help, ask for it.
For more information about endometriosis, visit the Endometriosis Association.