My 'High-Functioning' Chronic Pain Deserves to Be Acknowledged
Hi, my name is Emily. I’m 26-years-old and I suffer from chronic pain. Chronic pain doesn’t care if I have to work, if it’s my birthday or if I want to get some sleep. It is constant, unrelenting and exhausting. While I’m lucky that I don’t spend my time in and out of hospital or frequently bedridden, my pain is still real and still worth acknowledging.
One of the most frustrating issues I have come up against, aside from the pain itself, is how many people lack any understanding. Talking about my pain, about what it stops me doing, etc, is something I hate doing because I feel as though it just seems like I want sympathy or attention. This is the last thing I ever want. I hate having to call in sick to work because my pain is just too extreme. There’s nothing worse than having to cancel on a friend because I am just too exhausted from the lack of sleep the night before, due to my pain levels.
Sympathy and pity – these are things I do not want from you. These are things those of us living with chronic pain or chronic illnesses do not want from you. What we do want? Understanding. Maybe a little empathy.
When I have to cancel on you because of my pain, don’t tell me to “suck it up.” Don’t tell me to just pop some medication. In winter, don’t tell me it’s not that cold or that I just need to wear more clothing. Accept that my pain is beating me that day, maybe try to realize how upsetting it is when I am forced to allow my pain to prevent me from living my life. A little understanding goes further than you can ever imagine.
Unfortunately, chronic pain comes with its own set of issues that you are probably unaware of if you’ve never experienced it. My chronic pain was initially just my left ankle, and while that is still the biggest source of my pain, it is now not the only one. Due to my ankle pain, my walking has changed, the way I stand has changed, both to help ease my ankle pain. Because of this, my other ankle, both my knees and legs, my back and my shoulders all ache at various times thanks to how thrown off my whole body is. There is also the exhaustion.
Being in pain day in and day out is the most exhausting thing I have ever experienced. This is worsened as there are many nights where I struggle to sleep thanks to how bad my pain is. My ankle can spasm and send shooting pain up my leg. Sometimes my entire body just aches so badly because of how much strain it’s under. I can be so desperate for sleep, but there are nights it simply won’t come.
Then there’s the guilt. Guilt that I am not doing enough around the house. Guilt for calling in sick when I can’t handle the pain. Guilt for struggling with working full-time hours at 26-years-old. Guilt for needing my wonderful husband to do so much more than is fair. My patience levels have also been considerably lowered. When I’m struggling with pain and frustration, I can snap easily, or get cranky about the slightest things. I don’t mean to do this but it still happens.
Painkillers also don’t solve my issues as easily as people think. There was a time I was on constant, 24/7 painkillers. But they’re not strong enough to take all my pain away, so I decided there wasn’t much point in continuing putting them into my body. I have experienced doctors that act like I’m an addict. I have experienced doctors telling me it’s all in my head (despite physical symptoms), and multiple surgeries with no change or improvement.
I appreciate you thinking of me, but please don’t take it the wrong way if I don’t immediately act on your newest pain relief advice. The reality is I’ve probably tried it and it failed. Yes, I’ve seen all the different specialists, tried all the alternative therapies. Again, I appreciate you thinking of me but I don’t need you to try and solve this for me. I just need you to be a friend.
To those of you who have had your life change direction because of chronic pain, I see you and I understand you. I know what it’s like to start studying a degree and have to quit because you hadn’t learnt how to cope with your pain yet. I understand the frustration you feel if you’re not further along in your career because pain derailed you for a period. I know how hard it can be seeing people you know succeeding where you thought you would be too, at this age. I understand that when chronic pain and medications cause you to gain weight, you may of felt disgusting and worthless and like a failure. I understand feeling the need to justify your weight gain to people who don’t really know you.
All I can say is try to be kinder to yourself. Try to remember how much strain your body is under and that it is also OK to feel like this sometimes. We’re only human.
Please don’t read this as a sympathy ploy. I don’t want that. I wanted to give people the chance to understand what it’s like living with something like this on a less extreme level than those constantly hospitalized. The truth is, living with chronic pain is incredibly difficult, yes. But I’m still happy. I am lucky to have the most incredible man walking beside me through all of this. I have the best group of friends who are so amazingly supportive and encouraging. My family, particularly my beautiful mother, are always cheering me on. I am lucky enough to be able to work and to have an amazingly rewarding career. Chronic pain sucks. But I am more than my pain. I am strong, I am happy and I am living my life as best I can.
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