The following are a letter and a post that I found that describe what you can expect from people with chronic pain. I did not write them, they are anonymously written and I found them on a forum for people with chronic pain. If you are reading this and know someone who has chronic pain, please take the time to carefully consider what you are about to read. I can’t ask any more than that from you.
LETTER TO PEOPLE WITHOUT CHRONIC PAIN:
In the spirit of informing those who wish to understand:
These are the things that I would like you to understand about me before you judge me.
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about work, school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!” I am merely coping. I am sounding happy and trying to look “normal.” If you want to comment on that, you’re welcome.
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.
That’s what chronic pain does to you.
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying ” You did it before” or “oh I know you can do this!” If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.
Please understand that the “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to “get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?
I am working with my doctor and I am doing what I am supposed to do.
Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off of forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be “normal.” I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.
In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.
TIPS FOR DEALING WITH PEOPLE IN PAIN:
- 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.
- 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.
- 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 person with chronic pain. Don’t take it personally, or think that they are stupid.
- The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.
- Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.
- Don’t always ask “how are you” unless you are genuinely prepared to listen, it just points attention inward.
- 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 depresses occasionally when you hurt.
- 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.
- Knowing where a refuge is, such as a couch, a bed, or a comfortable chair, is as important as know 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).
- 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.
- 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.
- 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.
A Life of “Maybe” With Fibromyalgia & Chronic Fatigue Syndrome
Saturday February 6, 2010
One of the few consistencies of fibromyalgia and chronic fatigue syndrome is inconsistency. We never know from day to day how we’re going to feel, and that means planning can be difficult or impossible.
A recent comment here put it perfectly. Lisa B wrote:
“I live in a world of Maybes.
Maybe I can go to your party.
Maybe I can do this photo shoot.
Maybe I will get well one day.
Maybe I can clean my house today.”
-Lisa B
The “maybes” make it hard for us to maintain a job, a social life, relationships, you name it. Even scheduling something simple like a parent-teacher conference can be stressful — will I be able to make it? Will I be able to present myself well? Will I be able to have an intelligent conversation and remember what was said? Same goes for doctor’s appointments, parties, family functions, lunch with a friend, etc. I have all the sympathy in the world for those of you who have to go on job interviews or make presentations to clients — even thinking about it makes me a little panicky.
What I’ve had to do, first, is accept that sometimes I will need to cancel plans. The alternative is not making them at all, which means I’m giving up on a lot of things I want to be part of my life. Sometimes I feel like a flake, and other people might think that I am, but the times that I can make it are worth that risk.
Second, I try to be as open about my health problems as possible. If people know I have limitations, they won’t expect as much from me and they’ll understand when I say I just can’t do something. And quite frankly, if they’re not willing to cut me that slack, they’re not worth my time anyway.
Third, I definitely agree with a recent commenter who wrote:
“I learn to gravitate toward those that have health problems like myself.” -Kristi
I have a good friend with a severe form of arthritis. We both understand that plans are always contingent on how we’re feeling, and we spend a lot of time just sitting around talking (frequently with ice packs, heating pads, etc. on both of us!) It really does help to have at least one other person in your life who has physical limitations. If you don’t have someone like that, try local support groups or (if you’re up to it) an arthritis/fibromyalgia aquatic exercise class. If those options aren’t possible, try connecting with people online, like in a forum — you can form strong relationships without having to get dressed or leave the house.
