Pain Awareness Month: A Letter to Pain

Posted on September 29, 2019 by Chronically Jenni

September is coming to a close. This month has brought the feeling of new beginnings as little ones head back to school and an autumnal chill fills the air. I know for sure that I’ve already curled up in a blanket and lit a few candles as the evenings become darker. But something you may not know about September is that is it pain awareness month.

Because pain is something we all experience, one of the bodies natural mechanisms that helps protect us from harm, it may seem odd to some of the population that we should need a month dedicated to the awareness of pain. But for those of us who live with pain on a daily basis, it’s important to try and make others aware of how much pain can affect a person’s life.

I have been in constant, chronic pain for the last 5 years. I hope that this is unimaginable for mot people. I have good days and bad days, ebbs and flows, but pain never leaves my side. Sometimes there’s a reason, an acute injury, sprain or dislocation which causes extra pain, but often there are no answers. Pain lives deep within my tissues always simmering away, ready to boil over at any sudden changes. But the most difficult thing about pain is that it’s invisible.

Doctors will often ask you to rate your pain on a scale from 1-10 but there’s no way this can be accurate. Firstly, pain is so subjective and no one can experience pain in the exact same way as someone else, one person’s 4 could be someone else’s 7 and there’s no way to tell. Secondly, there are so many different kinds of pain; the gentle ache touching every muscle in my body might be a 4, the joints in my fingers are sore from typing so maybe they’re a 5, my neck, head and jaw have been on fire for days so maybe they’re a 7. So how can you quantify pain as a single number, it’s so much more complicated than that.

So today I’m writing a letter to pain. The one who has been my mortal enemy and constant companion for so many years:

Dear Pain,

I’ve known you since I was a child. You always came out to play. I didn’t realise you spent more time with me than other kids, I thought it was normal, so I didn’t think to say. You’d give me headaches as a tween but somehow I always got the blame; I was never drinking enough or eating the right things. It was always my fault. I was just called clumsy as you reminded me of all the bruises and sprains.

But I suppose have to thank you. Without you, I would never have known that something more was wrong. You kept getting worse and letting me know that there was something different about me which doctors couldn’t see. You were blamed on too much medication and anxiety. You were just sending out a warning so I suppose you’re not to blame. But the immediate danger is over now, I fought like you told me to and got us the answers, and yet here you are. I get it, you don’t know any different. You became too efficient. You’re just doing your job. But do you have to mess with my mood and my sleep and my ability to think straight? Do you really have to make me scream and cry and feel like it isn’t worth carrying on?

There’s this magic invention I’ve dreamed of for years where, somehow, I can give you to someone else. Make them see you, feel you. Just for a few seconds. Maybe just for a minute. Maybe the people who didn’t believe you were real can deal with you for a day. So that they can understand that you never leave me, it doesn’t matter if it’s my birthday or Christmas or if I have to go to work. You don’t care. So they could understand that when I talk about you it’s because you’ve become so intolerable that I can’t stand to deal with you alone anymore. I wish they could understand how unpredictable you can be, not being able to plan life from one day to the next because I have no idea when you’ll decide to be angry with me and make me unable to walk or to hold my head up. I wish you could just give me a little heads up sometimes.

A doctor told me recently that a procedure he wanted to do would be painful. ‘Don’t worry, I’m used to pain’, I replied, meaning that I’ve probably had worse. ‘Noone ever gets used to pain’ he said profoundly. And I guess he was right. We’ve been together so long but you still find ways to surprise me wether you stab me in the stomach or pinch at my delicate shoulder joint or send fire burning through my muscles, often for no reason at all. I want to calm you down. I want to make you happy. Whether its vitamins or exercise or cold therapy or some strange gadget, I do everything I can to be free of you, but I know you will always be there and, somehow, I have to learn to live with you. I hope one day we can be happy. You will be kinder to me and I will be kinder to you. I know it’s sad, but I don’t remember what it’s like to live without you.

Forever yours,

Jenni

Category: Illness, UncategorizedTags: chronic illness, chronic pain, csf leak, eds, ehlers-danlos, ehlers-danlos syndrome, letter, letter to pain, pain, pain awareness month, pots, september