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National Invisible Chronic Illness Awareness Week

In addition to living with the symptoms of headache disorders or migraine, having an illness others can’t see can be extraordinarily frustrating. Rest Ministries is raising awareness of life with invisible illness this week during National Invisible Chronic Illness Awareness Week. Check out the following press release for information on the week.

Nearly 1 in 2 people in the USA have a chronic illness and according to U.S. Census Bureau about 96% of illnesses are invisible. So it comes as no surprise that with hundreds of thousands of people on the Internet searching for health support and information, thousands of people now post daily blogs about the emotional trials they experience while facing chronic pain on a regular basis.

National Invisible Chronic Illness Awareness Week is being held September 8-14, 2008. Part of their outreach includes over thirty days of guest bloggers as well as bloggers all over the web posting about invisible illness issues. For example, what happens when someone with an invisible illness parks in the handicapped spot, even though they are doing so legally?

Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though we live with thousands of different illnesses, we have more in common than not. For example, illness impacts our families, careers, finances and daily living, to name a few. We can all learn from one another and share during this journey.” She adds, “And frankly, people are tired of hearing, ‘But you look so good!’ and they want others to know that their illness is legitimate despite how well they seem to be holding it all together.”

Laurie Edwards is the author of a recently published book called, “Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties.” She has blogged about her illness since 2006 and says, “When you are a young adult, people expect you to put in long hours to establish a career, to jump into the dating world, and to build a life for yourself. But they certainly don’t expect you to be sick. There’s no such thing as ‘too young’ to be sick! That is just one of the many reasons why Invisible Illness Week is so important!”

If you would like to participate in this unique chance to blog for awareness and increase an understanding about invisible illnesses, visit www.invisibleillness.wordpress.com. You can receive updates, participate in surveys, win prizes, and learn more about the telephone workshops at the Invisible Illness Week website.

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Helping Others Understand: A Letter to People Without Chronic Pain

Wish that your friends, family and coworkers had a better idea of what you’re going through? This anonymous letter has circulated on forums and by e-mail for a few years, but is always worth repeating.

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 affects, 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.

Someone asked if I thought it was appropriate to share the letter with her family and boss. Will it backfire if the recipients haven’t shown an interest in understanding your pain?

photo credit: desi.italy

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Migraine: A Surprisingly Visible Invisible Illness

Writer Anne Lamott describes someone with a migraine as having “a sort of death about the eyes.” As with pretty much everything she writes, her words draw a perfect picture.

I noticed long ago that I get dark circles under my eyes during a migraine. After reading Lamott’s line, I realized my eyes also appear to sink in their sockets.

To the untrained onlooker, migraine is an invisible illness. My loved ones have copious experience and can tell immediately when I have one — Hart’s the hardest to fool.

Flickr supports Lamott’s claim too. One of my favorite photos, by Jessica Reynolds, is above. Jenyepher’s migraine photos are excellent. Others to check out:

How are your migraines or headaches visible? Do many people notice?

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National Invisible Chronic Illness Awareness Week

National Invisible Chronic Illness Awareness Week, which begins today, lets people know that an illness doesn’t have to be seen to be real. Check out these statistics from Rest Ministries, the sponsor of the week.

  • Nearly 1 in 2 Americans (133 million) has a chronic condition
  • 96% of them live with an illness that is invisible. These people do not use a cane or any assistive device and may look perfectly healthy.
  • Sixty percent are between the ages of 18 and 64
  • The divorce rate among the chronically ill is over 75%
  • Depression is 15-20% higher for the chronically ill than for the average person
  • Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides and more than 50% of these suicidal patients were under 35 years of age

Rest Ministries is hosting an online conference about living with invisible illness. With four presentations one-hour sessions each day for five days, there’s a ton to learn. There are 20 workshops, including:

  • Going Back to School When You Have a Chronic Illness
  • Don’t Be Invisible: Workplace Success with Invisible Chronic Illness
  • Building a Business Vision While Honoring and Accommodating Your Health

Visit the National Invisible Chronic Illness Awareness Week website for articles and resources for living with an invisible illness.

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Seeking Patients’ Perspectives on Pain for Journal Article

Trisha, an RN with chronic migraine and occipital neuralgia, is seeking patient input for an article for she is writing for a nursing journal. Her focus is patients’ perspectives on chronic pain and what their health care experiences have been. She says,

The reason I want to write this article is because after almost two years on the other side of the fence, so to speak, it’s become glaringly obvious that there is a need for the healthcare community to hear first-hand how it feels to be treated with discrimination simply because you have a disability that isn’t visible to the naked eye. Being refused treatment in the ER, being accused of drug-seeking behavior, and not having access to adequate pain relief complicates the issues at hand and may, in fact, make the pain and suffering we face worse than it already is. Chronic pain sufferers deserve just as much respect and dignity in treatment situations as any other person with a disabling disorder.

Trisha has created a questionnaire for patients who would like to contribute. She asks many questions, but many only require short answers. More importantly, they are questions that anyone with chronic illness should think about. Your responses will help you better understand your headache history and the impact of illness on your life. Think of it as self-administered therapy.

Chronic Pain Questionnaire
I have a questionnaire I’d like to get as many people to fill out **realistically and kindly** as possible in order to base the article on as wide a reference base as I can reach and get responses from. If you’re interested, please fill this out and email it back to me by September 1.

Thank you in advance for taking the time to fill out this questionnaire. Please note that doing so gives me permission to use this information, in context, in an article or articles having to do with chronic pain and associated issues. If you prefer not to answer a question or two, please put N/A in that spot so I know you didn’t overlook it. I appreciate your input.

  1. What is your diagnosis?
  2. How long have you been ill?
  3. What would you say is the attitude of society today toward people with chronic pain issues?
  4. What is your biggest struggle in day-to-day life?
  5. If you could say one thing to the healthcare community, what would it be?
  6. In your opinion, what is the biggest obstacle to receiving quality care and pain control?
  7. Do you feel your pain relief needs are adequately met?
  8. How many doctors did you have to see before you found one willing to treat your pain in an effective manner, if you have found one at this point in time?
  9. Do you feel that chronic pain sufferers are seen as people with legitimate complaints?
  10. Does the use of illegally-obtained medication by high-profile individuals negatively impact the chronic pain patient seeking relief today?
  11. What would you tell society about your situation if you were given the opportunity?
  12. Do you believe there is a medication that, if made available to you in the correct dosage, would assist you in living a more pain-free life?
  13. Do you feel that chronic pain sufferers face discrimination when applying for Social Security Disability?
  14. Do you feel that chronic pain sufferers face discrimination in the workplace?
  15. How has your quality of life been affected since you became ill?
  16. Have you ever been refused treatment or accused of drug-seeking behavior in an emergency room setting when you’ve gone to one while in intense pain?
  17. Have you ever been told that your pain is all in your head?
  18. Does your pain significantly impact what you can do on a day to day basis?
  19. Have you lost your job or livelihood because of chronic pain?
  20. Has your family situation changed because of chronic pain?
  21. Have you lost friends because of chronic pain?
  22. Do you need help doing things that you used to be able to do independently because of your pain?
  23. Does your pain cause you to say or do things that embarrass you?
  24. Are you being treated for depression or anxiety due to chronic pain?
  25. Do you often pretend to feel better than you actually do in order to avoid uncomfortable situations or comments?
  26. What modifications have you had to make to your home to accommodate your chronic pain?
  27. Do you take narcotics for your pain?
  28. Do you take anti-seizure medications for your pain?
  29. Do you have trouble sleeping? 30. Do you have trouble concentrating?
  30. Do you have trouble staying awake?
  31. Are you able to exercise on a regular basis?
  32. Have you gained weight since you became ill?
  33. Have you lost the ability to enjoy the things you used to look forward to?
  34. Have you had to change careers or cut back on your work hours due to chronic pain?
  35. Do you feel like people avoid you because you are ill?
  36. Do you see a pain management specialist?
  37. If so, is this sufficient for pain control or relief?
  38. Do you feel that people with invisible disabilities are looked at differently than people with obvious physical handicaps?
  39. Is there anything else you’d like to say?
  40. Please provide your first name and last initial or a believable pseudonym I can use:
  41. Just for statistical purposes, can I please have your gender and age? You don’t have to answer this one, but it would assist with data groupings.

Thanks again. I appreciate your time and effort. –Trisha