This article has been circulating in the internet world of chronically ill people, and while I think it’s a nice letter, it kind of bugs me. A lot of it is very true, I guess I just sort of feel like that’s not really what I would want people to know about living in chronic pain.
I guess first I’ll take this list and comment on it, then I’ll add my own things.
TIPS FOR DEALING WITH PEOPLE IN PAIN
1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid. – Super true for me, and I didn’t really think about it until I read this letter. I generally can’t look people in the eye when they’re talking, not because I don’t want to, but because it’s way too much stimulation to look, listen, think, AND feel the pain.
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much. – Yep, exactly what I was talking about.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.
6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward. – YES. I, as a general rule, don’t lie…if you ask “how are you?” you’re going to get a real answer, how long it is depends on who you are and whether I think you actually care. If I don’t think you care (or I don’t have the energy for a real answer) you’ll get something like “I’m managing” or “just the usual”.
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain. – The biggest thing anyone can do for me when I’m in pain is to just be with me…I hate to be alone, I get very emotional when the pain is very bad. I need distractions and to know someone who cares is there.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort. – This is always a big problem for me, my worst pain is a very vague, almost impossible to describe pain that just radiates through my whole body. It frustrates me to try to describe it, and the best I’ve been able to come up with is “every individual cell in my body is screaming in agony”. I always get strange looks from people when I say that though, and I know no one understands what I mean…which just frustrates me more.
12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.
1) The biggest, most important thing I want people to know about what it’s like to live with chronic pain is that it never goes away. Think about that, every single second, of every single day, of your entire life. Sure sometimes it’s worse than others, but it’s always there…just because I’m acting fine and normal, does not mean I’m not in pain. Most of the healthy people I know lose their minds when they have a toothache, a sprained ankle, a headache, or the flu…imagine all of those things, at the same time, plus more, every single day. Now you have a teeny taste of my life.
Think of a time that you injured yourself, (like a sprained ankle or something) some doctor somewhere probably asked you to “rate your pain on a scale of 1-10, with 1 being no pain and 10 being the worst pain you can imagine”, right? I really, really hate that question, and I get asked it ALL the time. I have a friend who used to play a game with me, every time she saw me she would try to guess what number my pain was at…she was generally right too, partly because she’s awesome, and partly because my number is pretty much always between 5 and 8.5. For 2 reasons, first of all, days under 5 almost never happen. Second, I never rate anything a 10, ever. In the movie The Fault In Our Stars, the girl says “I was saving my 10”, and that’s exactly what I’m doing. People with chronic pain will understand this, but it can always get worse. I never rate anything a 10, because I understand the fact that there will always be something worse than the worst pain I can imagine. I only rate things a 9 that send me to the hospital; I’ve only had a handful of 9s in my life. So basically 8.5 is the worst possible normal day I could have, and I have quite a few of those.
I really wish I could make you understand; I would never wish this on anyone, but sometimes I wish people could just spend a day in my body, because then they would understand what this pain is like. It’s brain-numbing; when it’s really bad I can’t think about anything else, I can’t do anything else except lay still and be in pain. Breathing is too much work, talking is too much work, thinking is too much work. I can’t eat, I can’t sleep, I can’t cry. Just existing is too painful. That’s an 8.5…maybe even a 9. It strips away who you are; I really think it strips away pieces of your soul.
It’s frustrating, I want to be able to do normal-person things…such a stupid little thing like walking to the mailbox, standing long enough to put my make up on (5 minutes), or sitting through a meal will cause me to go from a 5 to an 8.
2) The other huge thing I want people to understand is that I am ok. I know I make all of this sound like the worst thing that could possibly happen to someone…and I’m not gonna lie, it’s pretty terrible, but I do not hate my life. Actually, given the choice I don’t think I would change it…as crazy as that sounds. I’m not angry, I’m not bitter or hateful. I don’t need to turn to religion to find an explanation for my suffering, and I don’t need to make myself feel better with platitudes like “we are given only what we can handle” or “everything happens for a reason”. While these and others may be true, I don’t need to use them to make the fact that I am sick ok. However, I am human, I have my bad days too; occasionally I get sad, mostly about the things I wish I was able to do, and I sometimes get frustrated or pissed off. When that happens I just need a friend, I need to whine and complain about how much it all sucks. As a general rule though, I’m fine.
3) Relax! I won’t break. I don’t need you to do everything for me. I’m not going to get offended if you say whatever it is you think will upset me. As a general rule, I don’t need anything from you, other than for you to act normally and be my friend.
I meet a lot of people who are amazed at what I deal with every day, who don’t understand how I have such a positive attitude and accept the way my life is so well. I have no answer for those questions, other than I don’t know any different…I don’t remember what it feels like to not have pain, so I think that makes it easier, but it’s also just the way I am.