The Perfect Disabled Person

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.

The Problem with “Curing” Us

Today I had a really annoying and unsettling experience.  Like most such experiences, it happened on the internet.  I’m not going to post screenshots but I will talk about what happened, because people stepping over boundaries is a huge thing that most chronically ill/disabled people experience often.  I’ve touched on this before, but today I want to go into a bit more detail about why it is a real problem.

So, my friend posted a critique of Big Pharma, which simplistically stated that they create customers, not cures.  I agree that pharmaceutical companies, like every other organisation in a capitalist scheme, exist to make money, and that their pricing of necessary medication is totally unethical.  However, to suggest that they can’t provide cures at all is just misleading, as is the suggestion that the very act of creating customers by providing necessary drugs is bad.  It’s the way they do it that is the problem.  Anyway, that’s largely beside the point, although one gentleman did very kindly explain my own position to me.  How I could have understood what I thought without his assistance, I’ll never know.

What annoyed me equally as much as the above mansplainer, though, was the elderly fellow who decided to tell me – not ask, tell – to try natural hygiene.  Despite several rebuttals from me and him being shut down by our mutual friend when he implored her to tell me to contact him, he decided he was going to send me a PM about natural hygiene and offer his services again.

From my understanding of it, natural hygiene is a health movement that promotes eating clean, fasting sometimes, exercising, getting plenty of sunshine and sleeping well.  It’s based on the idea that we can help the body to heal itself.  That’s all fine and dandy and I totally support taking those steps for good mental and physical health, as I’ve outlined previously.

However, various proponents of natural hygiene also encourage rejecting all supplements and all but life-saving medical treatment or medication.  Quite frankly, I think that is incredibly dangerous and irresponsible, particularly as it is a “treatment” being marketed to desperately ill people who are often at the point of trying literally anything.  There are some diseases that the body simply cannot overcome alone, and endometriosis is one of them.

Now, giving this fellow the benefit of the doubt, let’s say he utterly believes in this system and truly believes that he can radically improve my quality of life.  Why is it still so problematic for him to contact me?

1)  It is really directive.  If someone is sick, don’t tell them what to do.  You are not a person with the authority to tell them what to do.  A far less irritating way to phrase this, rather than as a command, would be “have you tried X?” Even that is still problematic, though, because…

2) we probably have tried it, or at least looked into it.  If we haven’t, there is probably a good reason for it.  We don’t actually want to be sick.  There is nothing about endometriosis that makes it worth having, I promise you.  If it is something as basic as trying to eat healthy, sleep well, etc etc etc, we have definitely tried it, and it is very condescending to assume we aren’t already taking those basic steps.

3) It assumes that we are just half-arsing our treatment.  Every person I know with endo is seeking proper medical care for it.  I’ve gone through four gynaecologists because it is super important to me to ensure that I am getting the best medical care I can (weird, huh?).  Whatever we are doing, there’s a really good chance we are doing under proper medical advice and supervision, and that we are doing it thoroughly, because, as I said, we don’t actually want to be sick.

4) It is incredibly presumptive to assume that you hold the magic cure for endometriosis when literally legions of highly qualified doctors, surgeons and medical researchers do not.

5) It suggests that you know the disease better than we do.  Like most people with endo, I’ve spent the years since my diagnosis researching, learning, seeking treatment and reading every article about it I could get my hands on.  The fact that someone insists that they have a cure implies that they (in this case, an elderly man who is neither a gynaecologist or the possessor of a uterus, that I know of), know more about endo than I do after living with it for a decade and being diagnosed for two years.

6) It fails to notice the inherent barriers to such treatments.  Yes, I advocate eating well and living as healthily as possible.  That’s just good common sense that helps support the immune system and can (but doesn’t always) increase the body’s capacity to deal with flareups.  However, it is flipping hard.  If I can’t stand, I can’t buy healthy ingredients or prepare a meal.  If I can’t work, I can’t afford a varied diet.  If I am in horrible pain, I want – and need – quick, easy and convenient.  I certainly can’t exercise, I will probably suffer disrupted sleep, and I’m not going to put my tortured body through the rigours of a fast.

7) It crosses a line.  I told this man to stop.  I told him very clearly I wasn’t interested.  However, he not only PMed me, he also told his friend, on the main thread, to tell me to contact him.  He refused to take no for an answer.  It is incredibly disrespectful to do this, regardless of his motives.  My healthcare is my choice and when someone says “no thank you”, you need to leave them be.  There is already enough paternalism in medicine without it coming at us from randoms on the internet too.

There are ways to suggest alternative treatments to people, but generally speaking, unless you are either a doctor or actually have the disease, it’s not a good idea, because you are probably talking down to someone who a) hears this sort of thing all the time, and b) knows a lot more about it than you do.  If you absolutely cannot help yourself (please do, though), stop when you are asked to.  Respect our boundaries.  Respect that we know what we are saying when we say “no”.  Respect us.

 

10 Things Not to Say to Someone with Endometriosis

TW: Pregnancy, fertility

I know for sure that I am not the only person with endo who has ever pulled that face in the picture above.  It’s the face that combines confusion and amazement that someone totally unqualified is genuinely trying to explain your own disease to you with stunning confidence with an attempt at patience and restrain, and curiosity about how much gaol time you’d really have to serve if you stabbed them with a pencil.  For me, it’s mostly happened online so the pencil part is hypothetical, but I have had it happen in real life.  People tell you with absolute sincerity that in having not magically experienced a cure for endometriosis you are doing something wrong.  It’s baffling.  So today I want to make a handy little guide for people who do feel the need to ‘splain people’s endo to them about what not to say.  Since I’m a helpful sort, I’ll follow it up tomorrow with some handy hints on what you should say.

Today, though, please, if any of the below is about to come out of your mouth, consider zipping it.

1) It’s just period pain/all women get it/toughen up

There’s a lot of variations on this particular theme, but basically they all boil down to “I don’t believe you about the pain you’re in.”  That is the least helpful thing ever.  Yes, many women get period pain and are able to carry on with their normal lives in spite of it.  Endometriosis pain is simply not the same and it is absolutely debilitating.  Believe us.

This one has a close friend that also annoys me…

2) Yeah, I have period pain too

NOT. THE. SAME. THING.  I get that many people have period pain.  I used to get it in a much more traditional sense than I do now.  It’s not great.  It’s also barely comparable.  I don’t mean to play down anyone else’s pain, but ordinary period cramps simply do not hurt as badly.  This may be intended as a comforting thing (misery allegedly loves company and all) but it doesn’t comfort – it makes light of what we are going through.  It’s like saying to someone with a broken leg, “yeah, I stubbed my toe the other day so I totally get it.”

It CAN be appropriate to say this if you are asking a question, like, “I get really bad periods too and sometimes I wonder if something is wrong.  How did you know it was something worse than just a normal period?”

3) My friend/cousin/sister/ex/etc tried this and it really helped her

This one is fine to say if it is a casual conversations discussing different experiences.  However, if you are saying this in a way that says:

  • I don’t believe it hasn’t helped you
  • You must be doing it wrong
  • You absolutely have to try it

then please don’t.  All people have different experiences with endo and with treatments.  I know many people have benefited enormously from Visanne; it did nothing for me.  I’ve had pretty good experiences with Implanon, whereas others have bled continuously and had horrible cramping.  There is usually a good reason we haven’t tried it or haven’t continued it.

Another good one not to say is this one’s cousin…

4) Have you tried yoga/raw vegetables/just exercising more/cannabis?

Yoga, a healthy diet and exercise are all important parts of staying healthy generally, and can assist in reducing the severity of symptoms.  However, they do not reduce pain for everyone, and they are 100% not a cure.  There are also times where pain, financial constraints and just normal life things make it impossible to do as much as we should in any of those areas.

Also, please don’t suggest things that are not legal.  That’s a good way to get people in trouble.  Cannabis may well help with pain relief, but it’s not legal in many parts of the world and it can have serious side effects, so that’s one that people should be talking about with their doctor, not people who just like weed.

5) You don’t look sick

Thanks.  You don’t look annoying, yet here we are.  I mean, this isn’t a disease that usually results in facial pustules (although I did have those on Visanne!), so it’s hard to know how you want us to look before we appear believably unwell.  There are many days when I dress myself like an adult, walk around upright and attend work or even have something of a social life.  These days I am either not in pain, or hiding it because that is a skill everyone with endo learns.  My clients would not appreciate it if I started grimacing and clutching my pelvis when I’m supposed to be representing them in court.  You learn to act normally.

6) You think that hurts? Wait til you give birth

I have it on good authority from women who have endo and have been through labour that both are extremely painful.  Different women say different things about which is worse, but enough of them say that their endo pains are worse to warrant us listening to them.  Additionally, childbirth usually results in a positive thing.  You have a good reason to push through them.  There is no point or purpose to our endo pains, so it’s hardly comparable.

Further, this sort of thing can be really upsetting to women who desperately want to have a child and can’t.  They would give anything to experience that labour pain because it would mean that they are fulfilling a dream.   On the flipside, it also assumes that every woman is going to give birth.  We don’t all want children.  Stop it.

On that note…

7) Try having a baby

This is one that too many doctors still peddle despite bucketloads of anecdotal evidence that having a baby is not a cure.  It’s something even my own surgeon has suggested on multiple occasions, and when pressed he straight-up admitted that endo can come back as bad or worse as soon as your post-natal hormones go back to normal.  He gave some spiel about how women way back when would just be constantly pregnant so they’d never suffer from endometriosis pain, like that is healthy, sustainable or socially acceptable today.

It also suggests that it is totally ok to bring a child into this world simply to cure a condition.  Assuming a child is even what the patient in question wants, is that really the right reason to create new life that you will be responsible for for the next 18 years at least?  What if their pain returns worse – how are they going to care for the child?  Will they resent the child for not fulfilling the promise their doctor made?  It all seems a little morally shaky to me.  By all means, women who want children should have them, but trying to peddle children as a cure?  Nope.

8) At least it isn’t cancer

Yes, I too am glad that I do not have cancer.  I know people with cancer and it is very clearly a horrific disease that too often kills people.  That doesn’t mean endo doesn’t suck, and it just makes me feel guilty for feeling pain.  Not a helpful comment.

9) Can you still have sex/do you look normal down there?

That’s a question for the doctors or very close friends, not for the curious and nosy stranger.  Likewise, asking “can you still have children?” or other deeply person stuff about your reproductive system is not on the table for discussion unless the person with endo initiates it.

10) Aren’t you better now?  

No.  I may never be.  Yes, I’ve had surgery and tried ten gajillion different drugs.  No, I’m not cured.  I know that’s very inconvenient for you – it is for me too.  Please be patient with me.  Goodness knows I have to be.

 

What comments have you heard that drive you up the wall?  How do you deal with questions and statements like these?  Let me know in the comments!