So the other day, I managed to do my usual “open my mouth before I took the time to think it through” type post on FaceBook. One of the problems with FaceBook is that once a post goes off my phone screen, it often disappears forever, never to be found again, and the page that posted this particular post often posts quite a lot, so trying to find it again on their page may not have worked, had I left the issue be and kept my mouth shut for another time.
The post was a link to an article that I fully understood and agreed with, however there were a couple of comments on the FaceBook post where I felt that perhaps the people replying didn’t quite “get it”. Here is an excerpt from the link that was posted…
Comparing open pores and malignant melanoma would, and should, be considered ridiculous and actually rather distasteful. So why should it be considered valid and meaningful to bundle up severe suffering and life-altering consequences with day to day “struggles”? Failure to identify the often excruciating experience of serious and entrenched mental health problems is a whitewash.
Please don’t try to normalise severe suffering. It’s not just a part of life in general, it is a extraordinary experience that dominates many people’s lives and identities. I am like everyone else in so many ways – needs, desires, hopes, skin – but when I am ill I am more unlike the general population than I am like and I am acutely aware of that. Can we please stop pretending otherwise for the purpose of dismantling the medical model? Because you’re marginalising the voices of the people you purport to want to help.
Basically, the link (a blog post) was stating that having a severe disability or illness is not the same as having a normal everyday human experience. For example, having severe depression, complete with self injury and suicide attempts, is not the same as being sad (grieving) that your dog died, and likening the two as being the “same thing” invalidates the experience of the former, and leads to a situation where people are expected to deal with severe situations as though they are normal everyday life events.
Which I think we can all agree is a fucked up way of looking at things, even though as a society, that is exactly what we do to people!!!
So I replied:
I totally agree with what she is saying, however unfortunately, I think this is one of those areas where if you haven’t experienced it, you’re probably not going to understand it. And if you don’t get it, then no, you haven’t experienced what she is talking about.
I’m sorry – I don’t have the words to explain properly right now (AS). I’ll think it over and come back if I find a way.
And I got my butt kicked a tad by someone who thought I was downplaying her experience – assuming that she has not in fact, experienced “severe” anything…
Which is not what I meant by “it”.
(By the way – said person and I had a little chat and she’s really nice 🙂 . It was just my usual way of not quite explaining things properly that got me into trouble, and is the purpose of this blog post – to explain properly now I have thought things over a little.)
I did not mean that if you don’t understand where the blogger was coming from, then you have not experienced severe situations – disability, illness, trauma, whatever. I meant that you (may – should I have said may?) not have experienced the way that society downplays your severe experience as just being a normal everyday part of life.
Another reason I took some time to write this blog post is that my kids had a paediatrician appointment today. Turns out that a situation developed that highlights where I (and the blogger) are coming from perfectly.
One of my children has a condition, it turns out. A clinically severe condition. I don’t post my children’s details online unless there is damn good reason, so I am not even going to tell you which child (and they both left with new, severe, diagnoses/issues today), let alone what the diagnosis was, however my kids are each about a decade old. And for approximately a decade, while we have known this child had issues in this area, we did not fully comprehend just how severe it was. Thankfully, the paediatrician picked up on it while we there for other issues.
For nearly a decade, we have been saying “yeah, but he’s a bit like that”, and “yeah, he just needs blah blah blah and he’ll be fine”. Other specialists and therapists have just ignored the situation altogether. In other words, our son has been dealing with this his whole life and because of that, it has become our normal. That is how the paediatrician put it. It has become our normal.
But it isn’t normal. It is nowhere near normal. He’s not a “bit” like that, he’s a whole fucking lot like that, and he needs help (and is now finally getting it, thanks Dr P). Thanks to our normalising this issue, he has gotten worse over the years, and who knows what might have happened if it had not been picked up on today??? (I’m having major Mummy guilt, I apologise).
Everyone gets a bit like that right? Sure, he might be a bit more like that than most, but still… No! Just NO!!! And this is the point the blogger was trying to make – normalising severe issues is not good for those going through them. It can in fact, be downright fucking dangerous.
When a child gets, say cancer, no one says “oh, but they’re just a bit like that, and we all go through it sometimes”. No one normalises cancer.
However only select populations cop the attitude that their severe issue isn’t really such a big thing.
Mental health issues, and invisible disabilities seem to cop the most invalidation in my experience (of disability advocacy, and no, I am not implying that other disabilities or illnesses don’t). Again, I have the paediatrician today to thank for these words – people don’t often understand, or pick up on, what they can’t physically see. When you can’t physically see an illness/disability, it can be impossible (or flat out IS impossible) to be able to fully sympathise (and empathy is out of the question), unless you have been there yourself (or close enough to it). And I think this is what leads people to trying to normalise these conditions.
That, and this newfound idea that everyone has to be a victim these days (but that’s a whole other blog post), coupled with increasing apathy among society for those in need (and yet another blog post).
So in conclusion, I wasn’t trying to say that if you haven’t experienced severe illness/disability/etc, then you will not “get it”. I meant to say that if you have not experienced people normalising your severe illness/disability, fobbing you off as being a hypochondriac, or a drug seeker (if your issue is pain), or an attention seeker, etc, then you will not “get it”. Not fully. You may be able to sympathise, however you will not be able to empathise.
All of what I have said thus far may come across as though I am saying that “normal everyday suffering” is not worthy of our time, attention, respect, empathy or sympathy. I’m not saying that, and neither was the blogger. Neither of us are trying to say that if you have either a normal everyday struggle, or a severe struggle that others appreciate as such, that this means “less” in ANY way. It does not. I have severe “chronic acute” pain (pain that is acute, but happens daily and will forever, so chronic in that sense). Quite often, people will complain about their splinter pain (or whatever), and then stop themselves, and apologise to me for complaining about their small pain, when mine is so big. I always tell them not to be so bloody silly – all our experiences are valid and pain is pain. Your worst pain might be my small pain, but it’s still YOUR worst pain. It is worst for YOU, and so deserves all the respect that my worst pain would. Probably more, considering I’m more used to being in pain in general lol… I’ve tried killing myself three times, have severe PTSD, and clinical dysthymia/depression, however if one of my friends is sad, for any reason, then their emotional pain is just as valid as my own.
All the blogger and I wish for, is that people stop normalising severe conditions. People doing so has been bad for my son, and has nearly (or has) killed myself (and others with my condition) more times than anyone could count.
Even if you have experienced this kind on normalisation of your illness/disability/etc, you may not agree with the other blog, or even with my own here. And that is ok. We don’t have to all agree. I do believe however, that in order to fully understand something, you have to have gone through it to some degree. As a white person, I am not going to fully understand racial issues (though I do my best to educate myself, and have lived through a small amount of racism myself, I’m never going to fully “get it”, as no white person can).
Anyway, hope that makes sense to those people involved on FaceBook, and those reading all about this here for the first time. If not, please let me know, so I can adjust my wording 🙂
Love to you all.