10 Things I Want Others to Know About My Chronic Pain

It has been exactly 10 years since I was diagnosed lupus and myositis, which are autoimmune disorders that cause me to struggle with chronic pain in my joints and muscles. It had taken just as long to get my diagnoses. For years, my pain was not taken seriously. With the test results always coming back normal, I was often written off as an attention-seeker. For a while, I believed what people were saying – that it was “all in my head” and there wasn’t actually anything physically wrong with me.

So I doubted my own body, fighting a constant war with myself, my pain and doubt. Once I finally got my diagnoses, it was with a huge sense of relief and vindication. It felt as though my pain had been legitimized and I was immediately started on medications to control the illnesses.

But the problems didn’t stop there. Even now, 10 years on, I occasionally meet healthcare professionals who are reluctant to help because of the words “chronic pain.” In the last 10 years, I have learned there is a huge disconnect between those with chronic pain and those who are lucky enough to be healthy. I also discovered that society is not generally understanding of chronic pain and this is not helped by poor representation of people with chronic pain in the media.

Living with chronic pain and illness can be isolating, and trying to get other people to understand what you are going through is frustrating. Thinking back over the last 10 years, I often think of the frustrating times when I’ve been misunderstood, misjudged and mistreated because of my chronic pain.

My answer to ignorance is to educate, which is why I have written this list of 10 things I want you to know about my chronic pain:

1. Pain, whether it’s chronic or acute, is a personal, subjective experience. We all experience it differently. I find it difficult to answer the question: “How bad is your pain on a scale of one to 10?” Someone’s number six may feel like someone else’s number eight. Many of us have seen that skeptical look on our doctors’ faces when they think we’re exaggerating just to get pain meds.

 

2. My chronic pain is exactly that: chronic. Some days it’s just about tolerable; other days, I can’t move without feeling like I’m being stabbed repeatedly with a blunt knife as I lie 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 is difficult for me to communicate or concentrate. 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 will simply be unable to respond to you at all, with emails/texts/messages/calls going unanswered for a while. Please don’t think I’m being antisocial 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. 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. I’m sorry for being so cranky!

5. My pain is often debilitating and for the majority of the time, I’m stuck indoors, unable to do much and reluctantly relying on others. I may struggle to climb the stairs, walk, move about, do the chores or look after myself. I hate asking for help. I don’t like being dependent on others and I’ll try to push you away. I don’t mean it; I hate it when people, especially my loved ones, see me looking so weak and defeated during bad days. I feel sad about the pain this causes them.

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. Please don’t yank open the curtains and tell me I’ll be better for it. It will trigger a migraine or a bad fatigue episode. Sometimes, a helicopter flying overhead will make my ears feel like they’re exploding. It may take a few days or more of rest to recover from something as simple as a conversation.

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 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 pain relief. I get the same frequent lectures about the dangers of taking pain meds.

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 and difficult to measure. 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 I am grateful for everything you do for me. It means more to me than you’ll ever know. Thank you.

This post originally appeared on World According to Lupus.

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Thinkstock photo via Mila_1989.