This letter to people without chronic pain has been floating around online for more than a decade; I’ve even shared it before. It is no less powerful, honest, and important than it was the first time I read it. I’m publishing it again, this time in honor of Migraine and Headache Awareness Month. Raising awareness is also about raising compassion, which this letter does beautifully. I only wish there were a way to thank its anonymous author.
Letter to people without chronic pain:
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
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 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.
Kerrie:
I just read this column again today after going thru some tough
days. Thanks for making a difference!!!
Timothy from Reno
Timothy, thanks for your tireless support!
Chris, I’m so glad you have such a supportive network. I do, too, and am deeply grateful for them. And good for you for knowing when a battle was worth the effort. When you have limited energy, there’s only so much you can spare.
Kerrie
Kerrie, first allow me to thank you for your continued gifts in these writings. It is comforting to know that I (and all of us) are not alone in the battles and struggles of dealing with this chronic pain!
As I read your post I could not help but become filled with a sense of gratitude. I am blessed to have a number of people in my circle that have a great deal of compassion and understanding around the Chronic Migraine disease I suffer with.
My family is wonderful! They all provide a great deal of support. It is nice to know that I have their love and their understanding.
My current, and former, employer is also very understanding. I think it helps that I talk about and share the experience of Chronic Migraine. I do not do this in a way that puts me in the victim role. And, I never use my disease as an excuse. I simply try to share a bit of my story, of my journey, with those team members with whom I spend time. This has helped raise their awareness. I have gotten full and complete support.
Of course there are a few, both in my family and in a professional setting, that exhibit an ignornance that does not seem easily resolved. One example… a family member whom I do not know very well came to visit. We had a big family dinner at a local restaurant. During the dinner the topic of my migraines came up. I shared just a bit of my story (not wanting the focus of the visit and the meal to be around migraine). Later in the evening this person made a comment that went something like this, “You just have to out-think those headaches!”
I chose not to confront this person. They were just about to leave, to travel back their home. I knew I would not see them again for perhaps a year or more. I simply let it go. What would the point be in taking on that attitude? If this were someone close to me, or even kind of close to me, I would not have hesitated in engaging them in a deeper conversation. In this instance I simply nodded.
Support and understanding are so vitally important as one fights this terrible war against Chronic Migraine. The fact, however, that not everyone can be a close ally, supporter or partner must be acknowledged. I try to surround myself with a small number of supporters who truly understand my pain (as much as a non-sufferer can).
Thankyou Kerrie!!!
Blessings, Timothy