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.

Staying Strong

So far in this mini-series I’ve talked about staying grateful and staying generous when we are faced with challenges that make it very hard to do that.  Today I want to talk about how we stay strong.

I think this is probably the hardest thing of all.  I can generally find something I’m grateful for even in the midst of despair – usually especially in the midst of despair – such as love, or morphine.  I don’t find it hard to give my time and energy to people because I literally do it for a living.  However, I do find it hard to pull myself out of depressive slumps and keep going.  We don’t get to use little mantras like “this too shall pass”, because it probably won’t.  We might not be able to exercise to get those endorphins pumping.  So what can we do?  More specifically, given that I’m neither a motivational speaker or a counsellor, what works for me and might work for you?

1) Accepting the situation

And right away we’ve got the hardest thing on the list.  Accepting what the situation is rally hard for me, because it requires me to walk a weird line between hoping that things will get better but also not dwelling on the fact that they aren’t, whilst being clear with myself that they might not, but not despairing about that.  It’s like being in a washing machine sometimes.  It doesn’t mean fatalism or pessimism; it just means dealing with the hand we are dealt right now and learning to live with it.  That being said, I still advocate…

2) Working to change it

Accepting the situation doesn’t mean you shouldn’t still be working on getting better.  Keep checking with your specialist (or multiple specialists) about alternatives, clinical trials, advances, anything that will progress your ability to manage endometriosis.

3) Having a purpose

Setting goals is one thing that makes me keep going.  I will not give in because I haven’t done X, Y or Z yet.  Sometimes they are long-term things, like making it through a year of work and going up a pay grade, or growing this blog to 100 followers with a giveaway to celebrate (let me know in the comments in that is something you’d like).  Sometimes it is smaller things, like to give this new medication a go, or to make it to the next long weekend and reassess.  As long as I have a reason to keep pushing through, it makes it a little easier.  Right now I’ve got my eyes on two weeks hence, when I’ll meet with Dr Edi-Osagie again to see if the Zoladex is working and determine whether surgery is the next step.  Having something in the future that I am focused on makes it easier to push through the present, which is mostly a weird stabbing pain in my…bladder?  Uterus?  Can’t really tell.

4) Staying as positive as possible

As I said in my last two posts, being happy makes it easier to deal with the bad stuff.  Training your brain into a more positive mindset isn’t a foolproof, 100% guarantee that you’ll always be happy, but it helps.

5) Treating myself well

Whether it is looking after myself physically by taking my medication and vitamins, keeping myself mentally healthy by being kind and forgiving to myself, or just plain spoiling myself on occasion, I find it much easier to make it through a week when I’m doing those things than when I’m not.  My journey’s hard enough; no point making it harder.

6) Keeping occupied

When you are stuck at home just doing one thing all the time it becomes really easy not to do anything at all.  I try to switch it up as often as possible.  Rather than watch several episodes of a show back-to-back I’ll go outside for 10 minutes after one, or get on the floor to hug my dog, or go and write something on my blog.  Mind games like Sudoku or logic puzzles are good to keep the old brain-motor running as it should.  Having an app to switch to for a little while, or a book, or doing some journalling or doodling is great.  The more you do the harder it is to sink into a depressive state (and the more you sink into a depressive state, the harder you will find it to switch up activities).  If I binge-watch a series, no matter how excellent, I won’t stop, and I’ll hate myself for it, and that will make me feel useless, and then I’ll be useless.  Breaking it up with other activities makes me feel more productive and active.

7) Asking for help

I’ve already talked about how I couldn’t have made it through the past few years without a support network.  Sometimes, I’m not feeling so strong.  Either I have no hope for the future, or feel like I can’t bear up under the pain any more, or simply need help taking the load off for a bit so I can get into a healthier mindset without the stress of undone tasks.  Asking friends and family to pitch in with some emotional support or practical help lets me do that.

8) Letting my worries out

Whether by writing them down, talking them over or praying them away, analysing my fears lets me take control over them and prevent them from controlling me.  If I know what my fear is I can step on it by asking, “So what?”  That’s kind of how this blog started.  I was telling myself, “I’m going to get fired because of my health.  I’ll lose my entire career and never be a lawyer ever again.”  Then I said to myself, “So what if that happens?  What will I do?”  “Ella,” I said, “I’ll start a blog.  That way I’ll have something to keep me busy and maybe one day I can even use it as a business.”  (There was a bit more emotional drama in between those sentences, but you get the gist).

Of course, this doesn’t always work.  Sometimes there is no solution to the worry so I’ll focus instead on letting it go, only to find it comes buzzing back in like that annoying little fly you’re sure you saw fly out of the window a minute ago.  Trying is important, though.

9) Staying hopeful (but not too hopeful)

If you pin all your hopes on a particularly solution, you will be crushingly devastated when it fails.  However, a bit of cautious optimism lets you aim for the faint light at the end of the tunnel, and means you aren’t absolutely broken when you find out it was a vital part of the tunnel infrastructure catching fire instead.  A little bit of hope makes it easier to get through the bad stuff because there is the possibility it might get better.

10) Preparing

Even if I don’t go out, I make sure to do certain things as if I will.  Every day I wash my face, brush my hair and clean my teeth.  It’s not much and it is something most people take for granted, I suspect.  However, those three little things make me feel more human, give me a small sense of purpose and achievement, and ensure that I don’t look and smell in the event that someone knocks on the door.  Even if I’m in my pjs, it gives me a small sense of self-possession I would otherwise lack, and it’s that small sense that helps me feel like I’m more competent, more confident, and therefore stronger.

 

What do you do to get through the really tough bits?  Any mantras or quotes that help you?  Let me know in the comments.