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Understanding Chronic Pain: An Eloquent Explanation for Healthy Folks

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.

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Migraine Beliefs & Their Cultural Context

Who do I blame for my beliefs about myself because of migraine? No one. I can’t single anyone out because I can’t deny the cultural context in which my notions were formed. (Yes, I know that sounds like grad student speak. Stick with me anyway.)

Think about how few doctors understand migraine today and how much is still unknown about how migraine works in the brain and body. Now consider how paltry the knowledge was 25 years ago, when my “headaches” became chronic. Without one-sided pain or a visual aura, a pediatrician or internist would not consider migraine as the culprit.

There was no way to verify or quantify my ailments when I complained of symptoms like nausea (but rarely vomiting), ear pain (but rarely any sign of infection), and dizziness. Add to these factors that the symptoms typically came on without warning and also lifted suddenly, often leaving me feeling perfectly fine on weekends. If I didn’t know what I now know about migraine, I, too, would probably think a child was making up her illness.

Remember that 95% of the world’s population has a headache at some point. For most of these people, a headache is mild and easily remedied with an OTC painkiller or a little time. Headaches are dismissed as no big deal because they are not a big deal for the vast majority of people.

I no longer refer to the pain I feel with a migraine as a headache, but as head pain. This is a new realization, one I didn’t have even eight years ago when I named this blog. For a kid, pain that occurs in the head is thought of as a headache. I had no words to explain or even a way to conceptualize what was happening in the physical area of my head as something other than a headache.

Furthermore, society dismisses the significance of illness altogether. Cancer and other life-threatening illness are treated with reverence and fear, but their true impact is also minimized. People who push themselves beyond their physical limits and refuse to acknowledge the possibility of death are praised for their bravery. Acknowledging how physically devastating treatment can be, that the odds of survival are low, or fear of death is considered “negative thinking,” which is taken as a sign the person isn’t trying hard enough.

An illness that has no visible signs (to the untrained eye), no diagnostic tests to prove its presence, is not immediately life-threatening, and has “headache” as its primary feature has little hope for being taken seriously. Never mind that the World Health Organization determined that severe, continuous migraine as disabling as quadriplegia and that chronic migraine is responsible for more years lost to disability than every other neurological illness combined*. These and other facts and statistics are painfully slow in spreading to the public’s consciousness. As much as my advocate’s heart doesn’t want to believe this, an illness with as much baggage as migraine may never be recognized as the life-changing, debilitating scourge it can be.

I wrote Migraine Beliefs because I know I’m not alone in internalizing these cultural messages. The harsh, harrowing truths I acknowledge are the reality of living with a poorly understood and highly stigmatized illness. I can only play a small role in raising society’s consciousness about migraine, but sharing my truth helps connect all migraineurs. If my words can reduce even one person’s emotional pain, loneliness, and self-blame, I have succeed.

*My headache specialist just shared this fact with me. The WHO report with that information does not appear to be online yet, so I can’t link to the source.

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Invisible Illness Awareness Week

For National Invisible Chronic Illness Awareness Week this week, its sponsors at Rest Ministries and volunteers have created and compiled a tremendous array of resources for those of us with invisible illnesses.

  • Presentations from the virtual conference cover topics from relationships to work to identity. Several presentations remain this week, but all of them are archived for you to listen to whenever you need a boost.
  • The website has a large collection of articles on a wide range of issues that folks with invisible illnesses — and those who love us — confront every day, like the difficulties of explaining an illness to friends, how to respond when someone is insensitive, and how to help people with invisible illness.
  • The statistics and stories section has some shocking information about chronic illness. Like that nearly half of Americans have a chronic illness, 96% of which are invisible, and the divorce rate among the chronically ill is higher than 75%.

Poke around the site for a bit. I bet you’ll learn something new that will help living with an invisible illness a little easier.

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Invisible Illness: Strength Through the Struggle

Guest Post by How to Cope With Pain Blogger

The writer of this post blogs anonymously as she is a practicing psychiatrist. Her practice focuses mostly on patients with chronic pain. Having chronic pain herself, her practice and blog reflect a deep understanding of its challenges. –Kerrie

As we all know, there are many challenges and difficulties when living with an invisible illness. However, the experience can also allow wonderful attributes such as patience, strength, humility, trust and perseverance to flourish. Encouraging these virtues –- also invisible– to grow within us is a way to take advantage of adversity

Patience is needed to wait for healing, to respect your own and others’ limitations, and to learn to live with chronic illness.

Strength is needed to carry the burden of illness, to be stoic for others when necessary, and to stand up for yourself.


Illness can teach us humility, that we have limits, that we do get sick, and that we need to learn to ask for help.

Illness can teach us trust, trusting others, trusting ourselves, and trusting in our spiritual beliefs.

Perseverance is needed to stick with treatments, to tolerate pain, and to live fully despite illness.


Thanks to Simon Davison (patience) and Lollie-Pop (strength) for the photographs at Flickr.

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“Overcoming Self-Defeating Behaviors When You’re Chronically Ill”: Presentation by the ChronicBabe Editrix Today

Check out ChronicBabe Editrix Jenni Prokopy’s National Invisible Chronic Illness Awareness Week presentation at 3 p.m. Eastern time this afternoon — and call with your questions. You can listen online or call in. The presentation will be archived in case you miss the live event.

The details from ChronicBabe:

national invisible illness awareness week Here’s the scoop: To hear my presentation tomorrow, starting at 2pm Central time, you can either use the Blog Talk Radio player to log in and listen (there’s nothing to download) or you can simply call (347) 202-0072 and hear me speak about “Overcoming Self-Defeating Behaviors When You Are Chronically Ill.”

Yea, I know, the title sounds kind of dull. But my presentation will be anything but. You’ll hear me talk about strategies I’ve used to kick my own rear end into gear when I’m feeling down, and you’ll leave with tons of advice you can start using immediately to boost your outlook, productivity and spirit! And at the end of the presentation, you can call in with questions and I will happily answer as many as we can cram in to the hour. (Use the same phone number listed above to call with questions.)

Before you listen in, start by reading these instructions for conference attendees which explain how Blog Talk Radio works. Then check out the speaker list to see who else you want to hear. (Please note: there are different phone numbers for each speaker!) There are more conference listening tips here and links to the live shows as they are presented.