Hi everyone.  Sorry that it’s been so long since my last post – particularly unfortunate given that it is Endometriosis Awareness Month.  I was struck down with a bout of gastro and writing was the last thing on my mind.

As part of Endometriosis Awareness Month, Buzzfeed has been running a series of articles raising awareness about endo.  One of them is “Things You Shouldn’t Say to People with Endometriosis.”  I’ve written on this before here, here and here, and given some suggestions about things to say instead here, so it’s always interesting to hear things other people are sick of hearing.

The Buzzfeed article, written by Lara Parker, is fairly tongue-in-cheek.  She gives some brief explanations about why you shouldn’t say these things, but she also writes how she would like to respond when these questions are asked.  It made me snicker.

Unfortunately, the responses on Buzzfeed’s facebook page and on the article were deeply disappointing, mostly from people who obviously do not get it and can’t be bothered to try, and even some from people with endo who apparently forget that we are allowed to be a little bit upset and annoyed about this horrific disease and people being arses about it.

People of colour in majority white societies have often noted the pressure to be the “perfect minority” – the model for all their race.  If they do a wrong thing, it just goes to show that “all people of X race are like that”.  I think there is a similar-but-different pressure on disabled and chronically ill people.  Whilst we aren’t required to represent the whole demographic the way people of colour are, there is a pressure to be this “ideal” disabled person.

What does the ideal look like?  Basically, inspiration porn.  Preferably, they were able-bodied and had a promising future, but they lost something – usually their ability to walk – in a horrific accident.  Doctors said they would never move again, but they regained use of their arms and took up Olympic paragliding, spouting mantras such as “the only disability is a bad attitude!”  They overcome every obstacle that a world built for able-bodied people creates for them rather than asking that maybe the world undergo some reasonable adjustments.  They are an inspiration to disabled people everywhere!  They teach lessons about the power of positivity!

They are a stick used to beat disabled people who are tired, cranky, depressed, or whom able-bodied people don’t think are trying hard enough.  “If they can do it, why can’t you?” And if a disabled person suggests that perhaps that isn’t actually the best attitude, we are rude, unhelpful, and bitter.

Here’s some examples of comments on the article:

“So you don’t want us to try and relate to you, or feel sorry for you? After what you wish we didn’t say, maybe add something saying what we SHOULD say. This is such a negative post.“

 

“This is a tad aggressive. I understand that it is frustrating to live with a chronic illness that has no cure and limited treatment options, but I think people suggesting options to help your pain is clearly out of trying to help ease your pain and out of caring. If you’re going to get that upset every time someone tries to offer you a helpful suggestion (even if it might not be helping) than you must have a terrible attitude. Especially regarding the questions of “can you have children with this condition?” I think it’s safe to say a person asking you this is probably trying to understand your condition and the implications of it. Sounds like the person who put this article together needs a therapist.“

 

“What a bitter way to look at the wolrd, I think a lot of times its our instinct to try and help people we care for. So even if I’m sure it’s been suggested to you, you have to look at it from positive angle, this person is suggesting something because they care about you and wants to help you. I have endo and while I know our journey is different, I can relate to all the suggestions but every time someone gives me one, as silly as it is, I can see in their eyes that all they want is to figure out how to make you feel better. How can you be so upset about that.“

 

“A tad aggressive…. I have a few unseen conditions too and if people offer some advice I simply say thank you or thanks I’ll look into it. No more no less….”

 

“Here’s a thought…. If you don’t want anyone to comment on your illness / problem, don’t bring it up to begin with. If you just keep it to yourself, like most people do with their health problems, others won’t have any reason to comment or suggest anything. Rather than get on here and bitch that people are suggesting things, just shut up all the way around and it will solve all your problems before they even have a chance to start.”

 

Here’s what I think able-bodied people who say this kind of thing don’t get: most of it.  Possibly all of it.  But specifically:

• That relating to us or feeling sorry for us is all well and good, but it doesn’t come in the form of suggesting we try yet another fad diet, or that we should be fine if we have this treatment because it worked for their cousin’s girlfriend.
• That sometimes we get sick of people making unsolicited suggestions and rude comments, or asking really personal questions, and we are allowed to be frustrated that people actually seem to think that this is ok.
• That this is not the same as aggression.  Passive-aggression, perhaps, but like most people, we really have to be pushed to breaking point before we morph into some sort of were-beast and start tearing faces off.
• That the questions and comments stack up.  We might be hurt or frustrated by a single question that, however well-intentioned, is invasive, rude or dismissive, but that when you get them all the time, it is hard to stay calm and patient.
• That intention is not the same as impact.  Someone could care deeply about me and my pain, but if they are asking a string of really personal questions or insisting that I would be fine if I tried the keto diet, their intention doesn’t matter as much as the impact it is having.  And surely, if they care, they would care about my feeling on the subject too?
• That we educate people about this all the time.  We are generally happy to explain what endo is, if it is the right time and place.  That doesn’t mean that we don’t get sick of having to do it again and again and again, or when someone starts demanding answers that a quick google search would provide when we just want to get on with our days.
• That we don’t tend to bring our problems up out of context, and when we do, we are either looking for a specific solution, should as flexible work hours, or explaining why we can’t do a thing.  That doesn’t mean we want to be told to have a baby or a hysterectomy.  Also, we can’t shut up and take opportunities to educate people.
• That endometriosis is utterly exhausting, physically and emotionally, and we cannot always be happy, positive, and polite.  There are some days I can’t even speak to people without literally feeling the conversation draining me of energy, however much I love the other person and enjoy the topic of conversation.

What I’d really ask people to do this March is to listen to us.  Listen when we say that things hurt or upset us, and listen to why.  Even if you don’t get it, please respect it, and understand that it’s not an attack on your freedoms or your character.  We’re just asking for a little bit of shush, or perhaps for you to say, “oh, that sounds awful,” and give us a hug or a nice cup of tea.

And don’t tell us to be more positive.