Last week I shared some quotable quotes I found on Pinterest about life with chronic illness. Visitors to my Pinterest board, however, will also see more than just funnies and sads. I like to save things that really capture some of the more difficult aspects of endo and chronic illness that I sometimes really struggle to articulate myself. I’ve rounded up 10 of my favourites that you may find useful to keep around for when words fail you but you still need to explain something. Because this post is very long, I’ve split it into two groups of 5.
Just a heads up – because I am doing image descriptions for all of these posts, this is going to look even longer than it is. Just skip the descriptions if you don’t need them.
1) A pain scale we can all understand
With this image I’m just going to summarise the useful part, which is the pain scale (it’s surrounded by tumblr posts of people describing their issues with the conventional scale).
“10 – Unable to Move – I am in bed and can’t move due to my pain. I need someone to take me to the emergency room to get help for my pain.
9 – Severe – My pain is all that I can think about. I can barely talk or move because of the pain.
8 – Intense. My pain is so severe that it is hard to think of anything else. Talking and listening are difficult.
7 – Unmanageable. I am in pain all the time. It keeps me from doing most activities.
6 – Distressing – I think about my pain all of the time. I give up many activities because of my pain.
5 – Distracting – I think about my pain most of the time. I cannot do some of the activities I need to do each day because of the pain.
4 – Moderate – I am constantly aware of my pain but I can continue most activities.
3 – Uncomfortable – My pain bothers me but I can ignore it most of the time.
2 – Mild – I have a low level of pain. I am aware of my pain only when I pay attention to it.
1 – Minimal – My pain is hardly noticeable.
0 – No pain – I have no pain.”
I know I’m not the only one who has gone to hospital, been asked what their pain is out of 10, where 10 is the worst pain imaginable, and thought, “how does this help anybody?” My 10 is not the same as another person’s 10. It doesn’t convey the actual effect of the pain on my body. It doesn’t take into account that I have a really vivid imagination, so I’ll never rate it at 10 because it might get worse and then I’ve just broken the scale. And is the scale linear or logarithmic? HOW DOES IT WORK?
Now, I don’t think the scale above is perfect, but I think it might be really helpful for people with chronic pain to use as an outline for their own. You could make a little flashcard and take it to hospital with you, so you can show it to medical professionals and make sure that you are on the same page about what the numbers mean.
In addition to making sure you and your treating team understand each other, it provides you with a consistent reference point, and it also helps demonstrate that you have actually thought about this and aren’t exaggerating. Like many people with chronic pain, I push through it on a daily basis and the people around me have no idea that I am dealing with, say, a level 5. My face doesn’t crack, my posture doesn’t slump. I carry that through to hospital, where I am quiet and calm externally even though I can barely think. I will giggle at things on facebook to distract me and make my mum watch cute cat videos with me. I can fall asleep despite really bad pain, because pain is very exhausting. I know that it consequently reads as me exaggerating when I say that my pain is an 8. Having this scale allows them to know that I am not plucking numbers from thin air; I have outlined the effect the pain is having on me and made a considered decision about where it is.
Better yet, wouldn’t it be great if hospitals had charts like this so we know all the doctors are operating off the same scale?
2) What being able to work really means
A tumblr thread that reads:
mmmyoursquid: |People love to talk about whether or not disabled people can work
but if you can work just fine and your disability is destrying your ability to have a life outsdie of work (because work takes all your energy and more)
Dead silence. Nobody cares.”
eenymeenypia: “File this under, of you can be active for 4 hours? You can work part-time. Um no, I have to get ready for work (30 min) to get to work (15 min) get home from work (15 min) feed myself all day (30 min) maintain myself, my home and my life (15 min, yeah right), which leaves 15 min for work and absolutely nothing else.
chameleonchild: “This is so accurate, back after I’d relapsed I wanted to try and go in for one class at school so I could still stay in contact with the education system. I let slip during a meeting that I managed to drag myself to that I could manage about 4 hours aof activity a week, which the teacher sprang on to mean I was being lazy for just trying to get to 1 hour class. Never matter that it was 30 minutes travel, that I would have to get washed and dressed, that I would probably still need to recover for 3 days from it.
Far too often abled people see the things they do as “non activities”, they don’t realise that for many disabled people these things have to be carefully planned and measured, and sometimes they simply can’t be done.
mmmyoursquid: “reblog bc the non activities thing seems really important words.”
I think this possibly sums up the concept of spoons in a way that is even more understandable for the average person. On your average week, my life is to go to work as many days as I can manage, drag myself to the gym twice a week if I’m lucky, and spend the weekend recovering. Some weeks I have to attend out-of-hours meetings (and some weeks I can’t manage it). If I’m having a period of real wellness, I will join my husband in a daily dog walk.
Notice the things I’m not doing here – cooking, cleaning the house, or shopping for groceries. Basic household stuff. If I want to have a shower or bath, I’m definitely not walking the dog. The only reason I manage to bath after the gym is because I get a temporary adrenaline high, which I often pay for afterwards. I tend to only socialise on long weekends or when I’m having a really, really good week.
I am lucky. I have more “useable hours” than many people. However, I honestly don’t remember how I used to manage to do so much between leaving work and going to bed. It baffles me that other people use their after work hours for more than resting and watching Star Trek. Health and vigour seem like wonderful things. I seriously worry for my fellow endo-warriors, though, who need to apply for the DSP, but can manage three hours of activity per day and are therefore assumed to be able to work three hours per day. Our society puts far too much focus on productivity and not nearly enough on quality of life, even in our allegedly laid-back Australian culture. The idea of lifters and leaners glorifies those who push through pain and exhaustion, and is of course perpetuated by those who don’t know what chronic pain and fatigue is actually like.
3) Changed lives
Image reads: “I think one of the most emotionally hard things to come to grips with, in terms of chronic illness, is wondering who I would have been without it. I was walking a specific path that got 130% re-routed when I got sick. And it feels like I’m in this bizarre, alternate, half baked version of my real life. And as much as I desperately want to get back on the track I was on before, even more, I want to know where that path would have led. Who would I have been? What could I have been? We always wonder what we’ll be when we grow up, and I feel like I was robbed of ever finding out.”
I think this is a really good way of explaining to people why chronic illness makes you sad. You are in mourning for the person you could have been, or thought you were going to be. I think it can be a tricky concept to explain.
I remember that my life was pretty much going the way I wanted until 2016, when my immune system basically packed it in and caused massive absences for around 4 months because I just got sinus infection after sinus infection, and then it carried into 2017 when my first operation went wildly wrong. It delayed my progression from paralegal to lawyer, and then prevented my movement from civil lawyer who did family law stuff to full-time family lawyer, which was the course I wanted to take, and then took me out of litigation entirely at the end of last year. Now I’m facing the possibility of a child much earlier than I wanted, followed by a hysterectomy. Whilst I have enjoyed the new job, I would love to be able to go back to where those two futures branched off and see what lay down the path I couldn’t take. Would I be making a name for myself as a good advocate? Would children still be a distant one-day? Would I have been able to travel the world like my husband and I wanted?
4) The in-between
Image reads: “A chronic illness phenomenon
I think there’s this weird phenomenon in life, specifically in the chronic illness community. It’s a place some of us get stuck in – the in between. A place where you’re too sick to function in the “able world” but at the same time you seem to [sic] healthy for the chronic illness world. You almost faint but you don’t. You’re always in pain it’s relatively tolerable. You’re not bad enough to qualify for surgery even though you’d benefit. You forget everything but you don’t lose time. Your heart rate is too high to be normal but not high enough to be critical. Your BP is low but not THAT low. You try to find answers but seem relatively okay to doctors so they don’t want to run more tests. You’re stuck in a place where you almost wish you were sicker so you could get helpful treatment.”
This one goes out to everyone with endo who has been curled up on the floor with a heat-pack crying from pain, but hasn’t gone to hospital because they know doctors won’t really do anything. This one is for everyone who has left an appointment feeling utterly invalidated or like they are over-exaggerating because their pain is just serious enough to change and ruin their lives, but not serious enough for the doctor to bother with. This is for everyone who has wished that their ovary could explode or their uterus produce actual fireworks so that someone might take them seriously and help.
I’ve been in the in-between – I live there, I think – and it just sucks.
5) It is more than pain
Image reads: “It’s not the pain, it’s the not knowing when it’s going to stop, it’s the suffering, it’s the way people look at you as if you’re find, it’s the medical professionals not believing you, it’s the drug induced dulling of the senses, it’s the longing to do what you used to do, it’s the loss of mobility, the loss of dignity, the loss of self worth, it’s letting down your nearest and dearest when they need you, it’s the dark and lonely nights when sleep eludes you, it’s the long and lonely days when movement is difficult, AND then there’s the pain on top of it all”.
Have you ever tried to explain what chronic illness is like to someone and then thought, I cannot possibly convey this? I think this little post does it pretty well. I don’t think people get that it is sooo much more than just pain. I’ve had to take days off when my pain is actually relatively tolerable, because my other symptoms are just so overwhelming that I can’t function. Fatigue is the biggest one. I’ve had days where I have turned my alarm off and fallen asleep again before my hand has even left the button, and then woken up and been so exhausted I literally can’t move, even though I know that time is slipping away and I’m going to be late. I’ve had to take days off where my drugs are working ok, but I’m experiencing all the horrible side-effects and I can’t act like a human being. I’ve had to take days off where the pain is mild but the swelling is so huge I literally can’t bear the sensation of clothes pressing on it and so I couldn’t get dressed. Once I had to turn up to work (when I was still in litigation) in a floor-length black maxi dress because it was the only thing I had that was loose enough not to cause problems but wasn’t pyjamas. I couldn’t go to court or see clients, of course.
Chronic illness is a pile of problems, little and large, and one day I might just have to sit down and list them all out because I feel like that is the only way to properly explain the frustration of it. In the meantime, I think this little tumblr post does a very good job.
I hope that this collation of posts and images will be helpful for you in conveying a better understanding of chronic illness to friends, family and treating teams on days when you can’t find the words yourself.
Stay tuned for Part 2.