A while back I saw a petition floating around on Twitter to recognize endo as a disability in the UK. I thought to myself, oh, I should share this!
But then I kept on thinking and realized that even though my knee-jerk reaction was “YES! Endo needs recognition!” I am actually not 100% sure where I stand on that issue.
As with most laws/petitions/government-related things, it’s actually quite complex.
On the one hand, it would be great to have an advocate in the law to help legitimize endo and the pain it causes. It’s so much more than “a bad period.” And it’s very hard to explain. Perhaps a law would help employers learn more about endo, spreading awareness and encouraging more scientists to search for a cure.
But that’s a rose-colored glasses way to look at things.
As much as I truly believe comparing illnesses will lead to nothing but trouble, I can honestly say that endo is not the most severe disability out there. Has it caused me to miss work? Yes. Have I lost jobs to it? Yes. But with humane employers I’ve found leniency when I do need time off and have been able to hold good jobs.
HOWEVER, that being said, I’ve only had surgery and stayed home sick for non-full-time jobs – meaning I lost pay each time I was ill, and was therefore making no money right when I had surgery bills to pay (bills I’m actually still paying off). Would disability laws have helped me to continue to get some compensation, even just a little, to help with these costs? I don’t know. Laws may not work that way, I’m just thinking out loud here.
Would disability laws have kept me from being fired from jobs when I fell ill? Maaaaybe….but here in Texas with the fire at will laws, I may have been let go anyway. In fact, having a registered disability may have kept me from getting those jobs in the first place.
I had nothing but troubles with the student disability office, which is kind of like dealing with disability laws on a really really small scale. In the end, I decided being my own advocate was more effective because I could educate, and was in charge of who knew what about me when.
For instance: I was in a SCUBA certification class. My doctor advised I not seek student disability rights that semester because they would have grounds to kick me out of the class. By entering as my own advocate, I was able to simply inform my instructor of my problems when they became an issue. By the time problems arose, I was already in the class and couldn’t be turned away – they had to accommodate my needs. And honestly, I didn’t have extreme needs. A quick break here and there, gentleness, and warmth – not like friendship let’s hug warmth but physical warmth, diving can get very cold and that makes me very sick. I was allowed to come a little early to get into a cozy wetsuit (everyone else just wore normal swimwear. I felt kinda embarrassed but you do what you have to.) and if I started to shiver I was allowed to hit the showers. Nothing huge.
But if the disability office was involved, the instructor may have felt overwhelmed, wondering how much he’d have to bend over backwards and probably deciding it would just be easier to deny me entrance into the class.
Disability laws may be more trouble than good.
Ultimately, I don’t think endo needs to be recognized as an illness that you could receive disability pay for. I know some women are in more pain than I am, but with endo’s cyclical nature I do honestly believe one could find work and accommodation on one’s own – I have. If your endo is out of control you don’t need disability, you need to treat it. Endo only gets bad enough to keep you bedridden if you let it, and in America we have the technology to keep it somewhat in check. Will you feel great every day, or even most of the time? No. But you should be able to work. If you can’t afford it, talk to your doctor. I’ve found a lot of leniency over the years – payment plans with no interest or late fees, that sort of thing.
So I think endo could be recognized as a disability, but not one causing you to be unable to work. I could use one of the handicapped parking tags, as walking in extreme weather can land me in bed pretty quick. I could have used protection against being fired/discriminated against for an illness I can’t control. So I don’t know. Maybe some laws could help? But they could definitely hurt, too. I’d need to read all the specifics before signing any petitions. There are a lot of little details that could really wonk everything up.
What do you think? Does endometriosis need to be protected by law? Should law stay out of it? What can be done to help those with invisible illness hold a job, stay out of debt, and pursue life, liberty, and happiness? Is the answer in government, or somewhere else?
Tell me your thoughts in the comments below! And of course, have a very happy Easter weekend. 🙂