Chronic pain. It has the ability to upset our lives. It puts limitations on us. It dictates not only what we do, but how much fun we will have, or not have, doing it. It sticks around for years, frequently getting worse, and rarely getting better. Often, there is very little we can do about it. Here is what we want you, our friends and family, to know about our chronic pain.
What it Really Means
Chronic pain means we actually are in pain pretty much every day. We can go through pain cycles where the pain can be very intense for a few weeks and then it can taper off for a period. We can have days or weeks of feeling not-too-bad but these days or weeks can be followed by intense flare-ups. Sometimes the pain levels can vary in a single day. We can wake up in pain and by midday, the pain is manageable or even gone, but it can come back again in the evening. We just never know. Sometimes pain can disappear for a lengthy period, and we think we have it licked, but it comes back. This can make us sad and frustrated. We just never know from day-to-day or week-to-week what is going to happen with our bodies.
We Have Tried Many Solutions
Many chronic pain sufferers have been experiencing pain for years and even decades. Because of how long we have had our pain, we have been to see many doctors and have tried many products said to relieve pain. It is uncomfortable and frustrating to live with pain and so we are highly motivated to make it stop. Chances are that most of what you can think to suggest to help us, we have tried, with varying degrees of success. Although we are quite knowledgeable about our bodies and where we can go to find relief, we can be open to hearing about new products, techniques or treatment. We would like it if you can talk to us about potential solutions in a way that is compassionate, caring, and respectful. If we say,
“thanks but no thanks,” please don’t take offense. It could be that what you are suggesting isn’t for us, and we just don’t want to get into the reasons why.
We Are Quiet About Our Pain
If chronic pain sufferers were to voice our pain every time we felt it, we would be doing nothing but talking about how much we hurt. We are acutely aware of how boring and infuriating that would be to listen to, so we don’t really talk about our pain much. Instead, we pretend that everything is okay. We pretend that we are normal. It’s easy for others to mistake us for normal, everyday people because that’s what we want to be. We don’t want to burden you with our issues. Besides, you couldn’t do anything about our pain anyway, unless maybe you wanted to give us a massage, but no guarantee that would even help some of us. And we are too polite to ask and would probably refuse you even if you did offer, as we don’t really want to feel like a freak at a party.
We Are Actually Pretty Brave
Being that a lot of us are silent about our pain and that we push through the pain to socialize, work, laugh, appear upbeat, and supportive in your time of need, that makes us pretty brave. When we go to bed at night, we don’t know if the following day will be the day from hell, or if it will be sunshine and roses. The fact that we still look forward to the next day with optimism that maybe we will feel better, also makes us brave. The fact that we get out of bed when our joints and/or muscles are on fire and do what we need to do, makes us pretty damned brave. So we’d like you to know what you may not know: that we are brave to face what we face and live, love, and embrace life to the best of our ability.
We Like to be Acknowledged
When you know that we suffer from chronic pain, we like it if you ask us how we are doing from time-to-time. A simple inquiry like, “How has your pain been lately?” or “I’ve been thinking of you, are you doing okay these days?” is a great way to acknowledge what we live with daily. It reminds us that you haven’t forgotten that we are dealing with an ongoing issue that needs compassion and understanding. Acknowledging us is an act of love and caring. Although we don’t like to dwell on our pain, the fact that you care about us is something we need to be reminded of, because chronic pain can be isolating and lonely.
We Don’t Frivolously Cancel Plans
Please know that if we cancel plans with you, it’s because we are at the upper limit of our pain tolerance and just can’t put on a happy face. It’s not a situation of “if I don’t have any pain, I’ll do something with you.” We are canceling plans because we are quite literally unable to derive any joy from the situation due to a spike in our pain. We are practiced at living with pain and making it undetectable to others so if we jam out, know that it’s because we are in so much pain that it would be unwise to try to push ourselves to fake that everything is okay. We just literally cannot, and we hope you will understand and save us a piece of cake.
We Have to Prioritize
If you ask us to do something for you, it may take us a while to do it and that’s because we have to prioritize our daily tasks. With the way our pain fluctuates from day-to-day or from week-to-week, we have to plan our lives so that the priority items get done first and if we have any pain-free or low-pain energy left, then we can do the tasks that carry less priority, like doing something for you. Please understand that the high priority items that come first to us are things like our jobs. We have to use our moments of feeling not-too-bad to attend to things that keep us alive, like earning a wage. Next, we have to see after cleaning, cooking, and taking care of ourselves so that we can get through the next day. We are not trying to neglect you or be a bad friend, we just have to make sure we are going to survive from day-to-day. If energy permits, we would be delighted to help you with whatever you need.
We Try Hard Not To Be Grouchy
Chronic pain is stressful and it’s a burden we can’t loose ourselves from. We despise the thought of taking our pain out on those we love and who love us, but on bad pain days, we can be touchy. Sometimes, rather than risk hurting anyone we love, we might self-isolate. We might lay low. It’s not that we don’t love you or that we want to ignore you. It’s that we don’t want to risk making you suffer for something that isn’t your fault and we don’t want to burden you. Sometimes a dark, cool room and a heating pad is the best thing we can do. Sometimes we just don’t trust ourselves not to speak from our hurting bodies. If, at times, we are grouchy, please forgive us and try to understand. It’s not you, it’s us.
We Are Optimistic
Ultimately, chronic pain sufferers are strong and optimistic. We are fighters. There’s something else about us: we embrace life, in spite of our pain. I don’t know a single chronic pain sufferer that doesn’t wake up every day with gratitude for life, in spite of the pain. Chronic pain sufferers look for the silver lining. And we live, albeit with pain, but we live life none-the-less.