Should Endometriosis Be Recognized as a Disability?

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.

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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.

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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.

No this law is good. I stand by it.
No this law is good. I stand by it.

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. 🙂

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6 thoughts on “Should Endometriosis Be Recognized as a Disability?

  1. I, too, suffer from endometriosis along with several chronic, invisible illnesses. I had a hysterectomy and then had endometriosis, again. I had no idea that was even possible. The surgeon can only remove what he can see, but there are microscopic spots that make it possible for it to resurface. I then had it removed a second time. I also have adhesions. A lot of times, these two go hand in hand. I know it is very, very painful and can be debilitating. I am on disability, but like I said, I have several invisible, chronic illnesses, but the endometriosis was so bad that I believe it should be considered a disability. I’m sure I have it again, along with the adhesions which are also very painful. That’s the problem with chronic, invisible illnesses, we don’t look sick!!!! Listen people, we are very ill, and just because you can’t see what’s going on inside our bodies, doesn’t mean it’s not real!!!!!! I’m so sorry that you are going through this. Has your doctor recommended a hysterectomy? Are you receiving any kind of treatment for this miserable disease? Sending you lots of good healing energy and I will add you to my prayer list. Hope you have a good Easter and I look forward to coming back to read more of your blog. Take care. xxx

    1. For about 3 years birth control pills kept endometriosis under control, but then the effectiveness wore off. I could keep having surgeries if I was very rich haha. I want to have kids, so I’m trying that right now before we move on to more treatments. Dr doesn’t want to do a full hysterectomy yet but has talked about a partial removal, which would still be very extreme of course. Pregnancy can help endo in a similar way that the birth control does, but I expect the effects to be temporary. Still, that would give me time to save up money for whatever the next step is. Unfortunately, endo makes it hard to get pregnant. We’ve been trying for oh, about two years now. So right now my only “treatment” is prescription pain killers. I bet that was a much longer answer than you were looking for! Lol sorry for writing a novel. Thanks for sharing your thoughts, I checked out your blog and I look forward to reading more there. I just came through an unplanned withdrawal from zoloft and that post was spot on – learned the hard way never to quit a medication without talking to your doctor!

      1. A girl after my own heart, I too, am famous for writing novels! LOL 🙂 I wish you luck on your endeavor to have children. Don’t worry, it will happen! Don’t try too hard, and when you least expect it, it will happen. Hope your day was a good one. 🙂

  2. It’s a tricky subject, and you ask a lot of really good questions. At what point does something cross over from illness to disability? Cancer is a serious illness and causes time off for surgery and recovery, but obviously it is possible to recover from it. Ongoing issues like heart/gut problems aren’t disabilities either but can cause serious problems with work.
    It’s such a pity that workers are not protected from discrimination based on physical capability, whether it is a disability or an illness, either temporary or ongoing.

  3. I have just read your article on your thoughts on why you think endometriosis isn’t the most severe disease and it shouldn’t be classed as a disability because you don’t get it that bad that you’ve had to have time off from work how on earth you can talk for the rest of the woman is beyond me!!!!!! I have had it for over 10 years and having to resort to a full hysterectomy the painful condition still came back a bit left bedridden with this constant pain 24 hours a day 7 days a week who are you to class it on your own experience when everybody is different, no two women are the same and i know someone who took her own life due to the consent agony, depression, chronic fatigue. I haven’t and won’t ever be able to born my own children, I’m on the strongest opiate medication and still it comes through!! It’s women like you who play it down just because your one of the lucky one that obviously your not in as much pain, i love to the see the reaction of you telling a room full of endometriosis women!!

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