The Pain Behind Closed Doors

September is Pain Awareness Month and I wanted to write an article linked to this because so many people live with Chronic Pain but it is still very misunderstood. Given that I am a living expert on pain I thought I’d have no trouble at all writing an article all about it. Then somewhat ironically a flare up of my Rheumatoid Arthritis set in and the very thing I was supposed to be writing about caused huge writers block and left me too exhausted to put fingers to keys.

Pain Awareness Month September What a Pain Graphic

The past three weeks I’ve been so unwell that I’ve barely left the house which means nothing very exciting has happened. This stumped me because while I wanted the article I wrote on pain to be informative and raise awareness, I had also hoped to keep is relatively positive. In my writing about life with chronic illness I aim to instil hope and keep a positive focus, so being stuck in bed, not feeling very positive and with not a lot to say I wondered what on earth I should write about. I spoke to my brother about this frustration and I had to laugh when he responded with “Rachel, it’s Pain Awareness Month, not talk crap month. Show people what it’s really like”. He was right, this month is to raise awareness. Anyone already living with a chronic illness likely knows what living with pain is like. The purpose of this month is to show people who don’t, what it is really like and raise awareness by doing so. The purpose of this month isn’t to say life is hard with pain but it’s all sunshine and roses really. That just isn’t true. So, as I write this from bed, with splints on both wrists, dosed up on painkillers, trying not be infuriated that every position I sit in is so uncomfortable I wish someone would just knock me out, I’m going to share with you what my life can be like behind the doors I normally choose to close.

A closed white door in an empty room, black and white image, patterned wall paper

I’m a pretty positive person, I refuse to believe life is bad just because I got ill. I try not to let my illness stop me from being me and doing the things I love with the people I love. You’re more likely to see photos of me out having fun on social media than curled up in bed. The thing is, I do spend a lot of time unable to do things I love, in fact I spend a lot of time unable to do things I don’t love like housework, washing and food shopping. One fun thing, or even one stupid day to day task can leave me bed bound. Pain and fatigue go hand in hand and being in pain all the time is absolutely exhausting. When pain takes over I hide from the world, not because I’m ashamed, but because who is interested in seeing or hearing about that? The reality is, people would probably be a lot more understanding if they did see and hear about that side of it. Being super positive all the time is not a bad thing, but when raising awareness we have to share what living with pain is really like, not some Instagram filtered version of it.

Black and white photo, birds eye view of a woman hold a book on her lap titled 'what I didn't post on instagram: A collection of essays on real lives and what we filter out'

I live with pain every single day. That is hard to comprehend unless you do too. Before Rheumatoid Arthritis I couldn’t ever have imagined what this was like. Take a second and just imagine how your life would be impacted if you were in pain every single day, constantly. There is no cure. You now have to live with pain all the time and you have to continue to function and live your life. Some days you may have pain levels of two or three out of ten on the pain scale, some days you will have pain that is a ten. Those are the days you will scream, cry and desperately long for something to make it stop. The other days of moderate pain you must function as usual. Imagine how that would have changed the day you had today? Would you have showered? Would you have applied makeup? Would you have gone to work or called in sick? Would you have cooked tea? Tidied or cleaned the house? Picked the kids up from school? Done the shopping? People living with chronic pain must keep going and have to do all these things. Imagine how exhausting and difficult that would be. Now imagine the ten out of ten pain days. How would you feel if you were unable to get dressed or clean your teeth? How would you feel if you couldn’t get out of bed or leave your house? Would you want to eat? Or would you want to curl up and sleep?  You’ll be exhausted, but on days like this you will not be able to sleep. You will be in too much pain to stand a chance of sleep, welcome to painsomnia.

Black and white, a woman holds her face in her hand

Now imagine a few months go by of this daily pain. How tidy and clean is your house? How many sick days have you had? How many social events have you missed? How many times have you eaten takeaway instead of a cooked meal? How many days have you managed to shower or get dressed? How many people have grown frustrated with you? How many friends have stopped calling to check on you? How many times has someone questioned if it’s really that bad or asked if you’re “better” yet? You can’t get better, there is no cure. How do you feel about the future now? How do you feel about facing a life of pain knowing how much it’s already changed your life in a few short months?

This is the reality of living with pain, and it isn’t pretty. The last three weeks I have managed to shower an average of every three days. I used to shower daily. I’ve worn makeup twice. I used to wear it daily. I’ve had to choose between preparing lunch or walking the dog, unable to do both. I’ve had to choose between brushing my teeth or brushing my hair, between changing the bed or changing my pyjamas. I’ve had to sit down to shower, I’ve had to lie down on the sofa after simply walking down the stairs, I’ve had to take a nap between getting dressed and getting a coffee.

A black and white image of a woman holding her hand up in front of her face

The two days I managed to get dressed and apply makeup, to anyone else I looked perfectly normal. This is part of the problem, and this is why awareness matters. You cannot see pain, but people living with it need your understanding and compassion. I recently went shopping with a good friend, who pushed me in my wheelchair because getting ready to go out had left me too exhausted and in pain to walk. While waiting for her to arrive at the shops a man walked past my car, parked in a disabled spot and glared at me. He literally glared at me the entire time he walked around my car. It was obvious he wasn’t sure I should be in that spot, even with my badge on display…and a wheelchair in the boot. Makeup hides a lot, but it didn’t hide the tears that came from his judgement. Every day people living with pain encounter judgement and discrimination and that isn’t okay. You cannot see if someone has a disability or chronic illness by simply looking at them, they aren’t always visible. A comment of judgement, or even frustration, from someone who doesn’t know what it’s like to live with chronic pain can do so much damage. We need to be a little kinder to each other and show compassion.

The thing about pain is that you can manage it, but even with the best medicine, treatments and therapies in the world there isn’t a cure for most chronic illnesses or the pain that accompanies them. You learn to adapt and live with it, and you don’t let it stop you living the best life you possibly can but it does change your life. I refuse to be beaten by it and I refuse to dwell in the darkness that clouds me on the worst days. I have moments where I’m overtaken by negative thoughts and a sense of hopelessness, but I have learned how to pull myself out of that. I remain positive and focus on the good in each day, even if the good is that I simply survived that day. However, being positive doesn’t mean reality should be hidden and to raise awareness we have to get real. You can share the reality of pain, without letting a negative attitude consume you. I encourage you to speak to people about what it’s like to live with pain, and be real with them, whilst also keeping a positive attitude. Hopefully it will start some really important conversations and make for a future where people are a little kinder to each other.

black and white image of a man and woman's arms reaching out to hold hands

If you know someone who lives with pain, I encourage you to ask them about it, you may open a door for them to be honest with someone for the first time. Sharing helps, and it certainly alleviates the loneliness that can often come with a chronic illness. If you are living with pain, then please know you are an absolute warrior, a champion and you are so much stronger than you realise. Don’t be afraid to share your story and don’t be afraid to admit when things are rough. You deserve support, love and compassion. I know some days it can feel hopeless, and I know some days it can feel like you’ve lost everything, but please know you aren’t alone and everything you are is more than enough. If anyone tells you otherwise, it is their issue, not yours. Keep going, keep fighting and keep shining a light during Pain Awareness Month, and beyond.

a black and white close up image of the flame of a candle

This article was written by me for The Unchargeables for Pain Awareness Month and edited by me for my own website.