Dealing with people’s reactions to Endometriosis

How to deal with the disgust when you explain to a person what endometriosis is. I think it is hard not to take it personally.  It is one thing for a person to say ‘that is horrible, sounds really shit to live with’, because you can open a dialogue there or nod and move on without feeling down. The period and the female reproductive system  is something that causes nose wrinkling and hand waving to shut up at the best of times. To talk about those things having problems that come with a whole host of other horrible symptoms even more so. Yet, there is no reason that we should be silenced. There is no reason that society should be able to talk about re-setting a broken leg and not about needing to take depo provera injections to try and manage endometriosis. I think the only way society will be forced to get over the stigma it has with women’s menstrual cycles and the complications some face if those who experience these things talk about them more often and more publically. The public doesn’t often hear or see periods or mentions of uteri behaving badly unless it has to do with pregnancy and a baby being in trouble. Or it is like scenes from Carrie where people are mocked and have tampons thrown at them. Fantastically realistic isn’t it?

So, people don’t talk about periods or pain or problems and they don’t talk about endometriosis. This means when someone gets diagnosed they can often find no one around them actually knows what it is. Explanations make people recoil in horror, stating that is disgusting, and that can often leave the sufferer feeling embarrassed, isolated, alone or perhaps like me really freaking angry. I think it can be hard to open up about this disease because we all know how society is and to then get treated that way when you do hurts badly. It makes talking about it to someone else harder perhaps. Personally, to be blunt, I have no fucks left to give. I rarely do with my health these days just because my whole set of endo gremlins took me so far down a black hole of illness. I say it as it is. I do know that for others and for me before this is a huge obstacle.  If we don’t talk about how we feel though we end up bottling things up and feeling crappy. Or people start to come  up with their own ideas about what is or is not wrong with a person and that really sucks too.

So to answer the question, I think it comes in steps and the first is to stop being disgusted by the disease ourselves as those that suffer with it. I truly believe that when I accepted all the horrid things it caused myself I could see the horror recoils for what they were, immaturity often and then a lack of information. I think for a long time the disgust got to me because I felt it too. It was like a reminder and an initial dip in emotion. Now I don’t feel that. Yes, it is horrible to live with but that is entirely the point. The patient lives with it, not  the person recoiling away. I refuse to be ashamed of the fact that my endometrium is flawed and causes me problems. I refuse to be ashamed that those symptoms can involve anal pain and crippling cramps. I refuse to be ashamed of natural occurrences within my body. I lived with the shame of being diabetic for too damn long and I won’t do it again. Remember that the response is their problem and not a problem with the person suffering.

Finding that inner determination is hard but I do think it is important. Embrace the fact that you have this disease. Talk about it, keep talking about it and especially talk in front of those that are recoiling. They need this information. So many people I’ve spoken to recoiled in horror and then kept listening because actually, some of those signs sound familiar and maybe they should see a doctor too. It might be endemitriosis and it might be something else but sometimes hearing someone else say everything isn’t perfect makes a person realise neither is their cycle but they can do something about it.

Stats vary as to how many people they feel have this disease but a decent figure is 1 in 10 but it is probably more because people who have a menstrual cycle are brought up in a shame culture and discouraged from talking about it. If we did more of us would see that something is not right and get help for a whole number of ailments that make people’s lives miserable when they don’t have to. Why is it that for many it is only when fertility becomes an issue that people are willing to intervene? A person with a uterus is far more than their possibility of growing a baby in it.  People think I only care about endometriosis because it might impact my fertility, especially as it went untreated for so long. They think that is why I pushed for the diagnosis. No, I don’t want to have children. I care because it fucking hurts and I have a paranoia that it is burning a hole through my intestines as I type.  Yet I constantly find myself having to push the fertility card to push my doctors forward. That is unacceptable.

Make it clear that endometriosis is not disgusting but it is really freaking hard to live with for many people. Make it clear that it is not just about periods and cramps but about nausea, headaches, light sensitivity, shooting pains in legs and your bum. It is about constant paranoia about when your period is coming and if it is going to mean you can’t take part in your holiday or an event or any other plans. Make it clear that it is every single day and it is every part of your body. Make it clear that it is serious.

Basically, how do you deal with people who recoil in disgust? You make it as clear as you can that it is a horrible disease with many symptoms a person would never label as disgusting on their own. Make it clear many people have it and they don’t talk about it and get the treatment they need because of THAT attitude. People don’t always mean to be horrible but no one should ever have someone recoil when they disclose something about themselves medically. It is just a horrible thing to do. The cycle has to be broken somewhere and it might be that I, you, or someone you know has the strength to start cracking it a little.

One thought on “Dealing with people’s reactions to Endometriosis

  1. DeeDee says:

    I feel very lucky to have a doc that’s completely OK with my seeking treatment for Early Luteal Phase Defect on the basis of mental health rather than fertility. Shockingly, I found a Catholic-centric treatment regime that works cooperatively with women’s bodies to restore natural functioning and is offered with compassion for those who suffer from more than just the fertility-related effects of endocrine imbalances. It doesn’t matter that I’m non-religious and that I never want children. I was suffering, and that was enough for my doctor to help (once I finally stumbled across this stuff, that is.)

    All it took, by the way, was some carefully timed progesterone (plus low-dose naltrexone) and even though I suggested progesterone to the reproductive endocrinologist, he just waved his hand at me like, “shut up, crazy lady, you can’t read the Internets and figure out that I’m lazy and incompetent.” Bitter much? Yeah. But I’m lucky–things have really improved for me. I hope the same happens for you.

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