Ankylosing spondylitis

“Do you even KNOW what chronic pain is?”

I do not know how many times I have asked this of family and friends over the last several years. Most people think of pain as the everyday aches and muscle discomfort. The infrequent headache or backache from working long hours. Some people know pain…. “I broke my leg last year and it hurt like hell!” Or my favorite “My jumpy leg really hurts when it acts up, it’s an 8 on a scale from 1-10!”

My husband has often told me “My mom lived with chronic pain and she never missed as day of work and she had RA!” or “My sister has RA and her doctors give her medicine to help with the pain!” Yes, his mom and sister have RA but after speaking with his sister she said “He has NO clue, what my mom and I went/going through!” And she is right.

People who don’t suffer from chronic pain do not have a clue. I have tried to explain this to him, as he does have some chronic pain in the form of pancreatitis, but he still doesn’t see the big picture. To him when he is “hurting” he thinks going to the ER and getting pain meds works just fine. He believes I need to find another doctor who knows what they are doing then I won’t be in pain anymore. How do you tell someone with this mentality that pain doesn’t work that way?

Few things a doctor does are more important than relieving pain. . . pain is soul destroying.  No patient should have to endure intense pain unnecessarily. The quality of mercy is essential to the practice of medicine; here, of all places, it should not be strained”~ Marcia Angell

There are days I can barely make it out of bed let alone to work, but I don’t tell him this. I never tell him when I miss work or when I hurt so badly I just want to stay in bed. Does it take everyone to have years of chronic pain to understand what we go through?

There is so much information today on the internet, medical or personal experiences for that matter, that discuss a large array of symptoms, tips for loved ones and alternative solutions. But do you think someone like my husband would go and search for this information?

One of my favorite sites is a blog by Shauna Harelson a nurse who deals daily with chronic pain. The information she shares is great for sufferers as well as for those who have family with chronic pain.

So why am I writing this? Because I live with someone who doesn’t understand chronic pain, and if there is just one person who reads this and gets some understanding of what chronic pain is, then this post has served its purpose.

“They say pain is all in your head.. Well I say it is in my head, my back, my knees, my whole body.. Well I guess they were right!” ~unknown

Here are some interesting facts… from Beyond Chronic Pain

An estimated 50 million Americans suffer from persistent pain each year, according to the American Pain Foundation.

1 in 3 Americans lose more than 20 hours of sleep each month due to pain, according to the American Alliance of Cancer Pain Initiatives (AACPI).

According to the National Headache Foundation, headaches are the most common type of pain. It is estimated that industry loses $50 billion per year due to absenteeism and medical expenses caused by headaches.

Pain is the second leading cause of medically related work absenteeism, resulting in more than 50 million lost workdays each year, according to the American Pain Society.

There are more than 100 forms of arthritis. Currently more than 33 million Americans have arthritis. Nearly 90% of all persons over age 40 show beginning signs of arthritis or rheumatism (Lawrence, R.C., Hochberg, MC, Kelsy J.L., Journal of Rheumatology 16, 427-441)

Women are less likely to receive treatment for pain than men. According to recent pain research by Hoffman and Tarzian ( “The Girl Who Cried Pain: A Bias Against Women In The Treatment of Pain” Law/ Med Ethics, 2001: 29:13-27), women are less likely to receive treatment for pain than men.

Some 52 million informal and family caregivers provide care to people aged 20+ who are ill or disabled, according to the Department of Health and Human Services. Many caregivers consider pain to be an indication of the patient’s status.

Pain costs an estimated $100 billion each year. Every day, 60% of men and women experience some pain (AACPI).

Chronic pain not only causes physical discomfort, but also interferes with social relationships, family life and self-esteem. There is a high correlation between chronic pain and depression.

So you are one of those people who lives, works or knows someone with chronic pain. What can I do? you ask….

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.
  • 4. The senses can overload  while in pain. For example, noises that wouldn’t normally bother you, seem too  much.
  • 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.
  • 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 ( 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.
  • 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.
  • 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.
The next information I want to share has been passed along for years and shared between those who have chronic pain and those who don’t. It really describes what those of us with chronic pain REALLY feel, so share this with someone you know even if they don’t know anyone with chronic pain.
The Open Letter below is a piece of writing shared between chronic pain patients on the Spine-health Forum over the last few years. This letter was originally written by Ricky Buchanan under the name of Bek Oberin around 1995. Ricky is an internet veteran, having started one of the first 25 blogs on the web. She lives in Australia with disability from chronic fatigue syndrome (CFS). The letter was first written to let people know what it is like to have CFS or Fibromyalgia and has been adapted for other chronic disorders like multiple sclerosis, angioedema, hepatitis C, RSD, and Depression and Anxiety.

Open Letter from a Person with 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 probably don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I’d still 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 at not being miserable. So, if you’re 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 either paralyzed, or you can move. With this one, it gets more confusing every day. 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. That is one of the hardest and most frustrating components of chronic pain.
  • Please repeat the above paragraph substituting “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on, it applies to everything. 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, “But you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then 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 “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 to 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 know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder”. Obviously, chronic pain can deal with 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 say 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 or forgotten just because I’m somewhere, or I’m right 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, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were 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. It’s 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, it’s 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. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is 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 help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the “normalcy” of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
  • I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.

Thoughts to help you through the day….

  • Dream as if you’ll live forever, live as if you’ll die today~ James Dean
  • Live as if you were to die tomorrow. Learn as if you were to live forever~  M.K. Gandhi
  • Whomever said, “No Pain, No Gain” never had chronic pain!~ Amanda Lakso (ME)
  • Believe you can and you’re halfway there~ Theodore Roosevelt
  • Change your thoughts and you change your world~ Norman Vincent Peale
  • Pain was not given thee merely to be miserable under; learn from it, turn it to account~ Thomas Carlyle
  • When you get to the end of your rope, tie a knot and hang on~ Franklin D. Roosevelt
  • Every day holds the possibility of a miracle~ Elizabeth Davis
  • It does not matter how slowly you go as long as you do not stop~ Confucius
  • Don’t be afraid to go out on a limb. That’s where the fruit is~  H. Jackson Browne
  • Just do what you do best~ Red Auerbach
  • Our destiny is shaped by our thoughts and our actions. We cannot direct the wind but we can adjust the sails – unknown
  • Your Thoughts Build Your Life~ Buddah
  • Don’t undermine your worth by comparing yourself with others. It is because we are different that each of us is special~ Brian Dyson

3 replies »

  1. Thank you for liking my post. Sorry I haven’t got back to you sooner – Iritis, you know… I’ve had a look around and I love your site – an excellent resource. m

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