Tuesday, 18 July 2017

Chronically Painful: 10 Things You Should Know About My Pain

1. Pain, whether it's chronic or acute, is a personal, subjective experience. Everyone experiences pain differently. I find it difficult to answer the question: "How bad is your pain on a scale of one to ten?" Someone's number 6 may feel like someone's else's number 8. Many of us have seen the look of disbelief on our doctor's faces from time-to-time, when they think we're exaggerating our pain score for attention or to get pain meds.

Revised Pain Scale by Hyperbole and a Half 

2. My chronic pain is exactly what it is: chronic. However, some days it's more bearable; other days, I can't move without feeling like I'm being stabbed repeatedly with a blunt knife as I lay stiffened with agony in bed. We cannot predict when good or bad days may occur. So please don't be offended if I have to cancel our plans. When I'm having a "good" pain day, I will show up and be there, I promise.

3. When the pain is overwhelming, it's difficult for me to communicate or concentrate on conversations. I will forget what you've just said, or I will struggle to string a sentence together. The pain is distracting. Often, I will only reply with one word answers, or I will simply be unable to respond to you at all, with emails/texts/messages/calls going unanswered for a while. Please don't think that I'm being anti-social, or rude. When the pain is more bearable, I'll be more communicative.

4. My pain makes me short-tempered, impatient and irritable. On my worst days, it makes me really bitchy. Unfortunately, this has cost me some friends. When I'm like this, it is best not to engage with me. I'm best left alone until the pain eases or until I'm feeling less bitchy.

5. My pain can be debilitating and I'm often stuck indoors, in bed or on the couch. I may also struggle to climb the stairs, walk or move without your help. During these times, I need help from other people. I hate being dependent on others and so, I may try to push helpers away; I don't like being seen as weak, dependent and burdensome. It takes a lot of strength to swallow my pride and let people help me.

6. When my pain is at its worst, my senses are overstimulated: daylight streaming in through a crack in the curtains, the sound of a boiling kettle, a bite of food, or the smell of cleaning products becomes unbearable. Regardless of my pain levels, I am chronically light-sensitive and need to keep the curtains shut during the day. My neighbours probably think that I'm growing a pot farm inside...or that I'm a vampire.

7. If you ask how I am doing, I may answer with "I'm fine!" when I'm not really, or I may be brutally honest and tell you that I'm feeling like shit. Please don't be offended by my honesty. My pain is what it is.

8. If my pain requires me to seek medical assistance (e.g. breakthrough pain), I'm likely to be treated as a drug-abuser and given lifestyle advice, rather than the pain relief I need. Then there's the frequent lectures from pharmacists about the dangers of taking pain meds long-term. Also, don't expect me to be impressed if you say things like "Are you sure you need those meds? Can't you do yoga or something instead?" Just don't go there.

9. Chronic pain is isolating. It is poorly understood in the medical community and it's difficult to measure, as pain is a subjective. I can't expect you to understand my pain unless you step into my shoes. I can't expect anyone to understand my pain, because we all experience pain differently. The pain may take away our social lives, employment, studies, hobbies and anything else that involves people contact. Not being able to go about our everyday lives may isolate us from society.

10. It is the little things you do that are actually a big deal for me. Even little things, like bringing me a cup of coffee or fetching my blanket or taking me grocery shopping etc, will make a huge difference to me. When the pain is severe, I may find it difficult to express my gratitude. But please know that I am grateful for everything that you do for me. It means more to me than you'll ever know. Thank you.

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