Many of you are probably familiar with the saying “Alone, but not lonely”. There are definitely times that you can be all by yourself, but not necessarily long for companionship or understanding. Sometimes we all need a little alone time. But I’d like you to take a moment and imagine months or even years without these privileges. Imagine spending almost all of your time in chronic pain, sleeping and alone. Imagine being in my specific shoes: graduating high school early, being surrounded by people who are not only years older, but also couldn’t possibly understand the kind of stress your body is under. A little different than having some “me” time, isn’t it?
If there is one thing all chraintims understand that other people simply don’t, it is how alone pain can make you feel. Your family members and friends, no matter how much they go through with you, just couldn’t possibly understand what it’s like to live your life. And this is very difficult to come to terms with. This has been especially hard for me to cope with since there are not many 15 to 20 year-olds who deal with debilitating pain. Up until I started blogging a few months ago, it never even crossed my mind that there were other chraintims out there who would understand how I feel. It seems ridiculous now, but I felt so isolated and so alone I completely forgot that I’m not the first, and I definitely won’t be the last, person to deal with chronic pain.
The main thing that is so hard for family and friends to understand is how we have to plan our days according to our energy levels. This is more easily told through The Spoon Theory, which was thought up by a college aged Lupus patient.(If you haven’t read the theory, I highly recommend you do. It will change your view of what chraintims go through on a day to day basis.) The short version of the story is basically that all chraintims are only allotted a certain number of spoons a day, and we must use them wisely. Things like showering, doing our hair, and getting dressed use up a considerable amount of spoons and leave us only being able to do a few actual activities in a day. Plus, we all live trying to save a spoon, just in case we end up in more pain or in the hospital and need that spoon to keep us going.
Never thought of our lives this way? Most people don’t. Most people don’t understand why we have no motivation, or can’t go to work or do our chores. All we’ve done is sleep all day, right? Pain drains energy like nobody’s business. And until you’ve experienced pain all day, every day, along with copious amounts of medication to treat that pain, you’ll never be able to understand. However, there are a few things you can do to make a chraintim feel more understood.
1. Don’t push exercise as a way to make a chraintim feel better. Although it may actually be a proven way to help, odds are exercise hurts like a mother and there is a reason we just don’t feel like doing it.
2. We WILL NOT feel better if just “get dressed and get out”. Sometimes we just don’t have enough spoons to do this. Instead we end up exacerbating the pain and falling asleep wherever we “got out” to.
3. Don’t make chraintims feel guilty for canceling plans. We would really like to be normal and feel less alone for a couple of hours, so if we had enough spoons to keep our word, we would. We aren’t flaky people. We completely planned on showing up when we made the commitment. No one would be upset with someone who canceled due to other diseases. Why is chronic pain any different?
4. Don’t shame us for taking narcotics. You have no idea how many people I’ve had tell me “You’re too young to be on drugs that strong!” or “You really shouldn’t be taking narcotics. You don’t want to get addicted.” Really? Is that so? I was just thinking how fun it is to be 15 and require handfuls of Percocet everyday! Addiction? Well doesn’t that sound super fun?! WE KNOW about the risks involved with taking our own damn medication. We have doctors whose sole job is to manage our pain medication. Narcotics were invented to help control horrible pain, and since that’s what we are using it for, it is appropriate.
5. Don’t say you’ll help us with anything we need unless you mean it. My parents do a lot for me and have been an amazing help over the past 5 years. However, there have been times that I come downstairs barely able to breath because of the pain I’m in and when I ask if someone can get me a glass of water, I get a lecture about how I can do things myself. Just be observant of your loved one. If they are extra cranky or are acting funny, now might be the time for that extra help you promised. We may already be out of spoons for the day.
So where does that leave the chraintims? These tips may help, but our family and friends will never fully understand us. What can we do to feel less alone? Connect with other chraintims! Follow boards on Pinterest about chronic pain (like my own here), follow chronic pain accounts on Twitter, read blogs about chronic pain, and join online (or in person) support groups. I’ve had my condition for 5 years, and I have felt less alone in these past couple months since I’ve started blogging than ever before. Believe me, a little support goes a long way.
What do you want people to know about chraintims? Let me know in the comments below!
Thank you to stockimages and freedigitalphotos.net for the image.