Featured Workshops Today: Communicating With Others

Communicating is a big deal when it comes to making some practical steps toward living with joy. We recommend the following workshops from past years.
“Helping Others Understand Your Pain” with Karen Lee Richards, a writer and patient advocate who works at HealthCentral and lives with fibromyalgia.

It’s OK to say NO: Building Healthy Boundaries” with Jenni Prokopy is a nice reminder that we are allowed to take care of ourselves. Jenni is the founder of chronicbabe.com and a journalist.

And “How You Can Help Those Who Help You” with author Jo Franz who lives with multiple sclerosis.

Times get tough when you are “Coping with Crises on Top of Chronic.” Join Jenni Saake (founder of Hannah’s Hope: Seeking God’s Heart in the Midst of Infertility, Miscarriage & Adoption Loss ) and Lisa Copen founder Rest Ministries, as we chat about surving crises in the midst of Chronic illness. Between the two of us, Lisa and Jenni have survived 45 years of multiple chronic illnesses including Chronic Fatigue Immunity Dysfunction Syndrome (ME/CFS), rheumatoid arthritis, fibromyalgia, diabetes, endometriosis, infertility, chemical sensitivities and more.

These women know that life doesn’t stop just because we are in pain. Hear us share our hearts and experiences through surgeries, infections, IV therapies, broken bones, unemployment, adoption journeys, and grief ranging from miscarriages to the deaths of grandparents. We will share a few survival skills for coping with the stress of everyday life when crisis hits.

This year instead of having a live virtual conference we are featuring some amazing workshops from past years. You can find them all here on Blog Talk Radio or, if you use itunes, enter “invisible illness” under “podcasts” and then download them to a music player to listen to anytime. >More instructions here

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“What do you do?” Explaining About Your Invisible Illness and Career or Lack of It (Or Do You Need to?)

This discussion comes up every time someone asks you “What do you do” or every time a person with invisible illness describes his or her life.

The conversation often becomes weird and strained, but that’s to be expected, given that the person’s real illness is not being recognized.

For example, imagine a cancer patient if cancer were not recognized as a “real disease” and people kept asking why the person had lost his or her hair and was falling behind at work. Imagine someone with type 1 diabetes who was told they just needed to drink less water and they would be fine.

Injustices of this sort happen every day to people with invisible illness, because as in these hypothetical cases, misunderstanding and invalidation occur when people are unaware of the reality of a disease. However, being straightforward and just saying what comes to mind is not always the way to go, because of a few factors:

• Listeners might have a hard time understanding how much invisible illness can affect a person’s abilities, including mental and emotional abilities. This society seems to think that the body cannot influence the brain; only the brain can influence the body.
• Between psychiatric ideas about psychosomatic illness, “memes” about people who just thought they were sick but they needed to get out more, and propaganda about CFS and fibromyalgia being “yuppie” illnesses that are purely “psychological,” people might be primed to think that invisible illnesses are not “real” diseases.
• There might be communication difficulties. “Fatigue” means different things to different people. “Irritability” can range from snapping at someone to kicking a hole in the door.
• After being in an illness support community, the sick person might incorrectly assume that healthy outsiders are aware of the basic assumptions and knowledge shared by everyone in the illness community.
• Lastly, dynamics with people close to oneself (family, friends, partners) can be intense and fraught. These people might be directly affected by one’s symptoms and inabilities, and you deal with them often so their attitudes toward you will affect you and perhaps your recovery. Thus, it is especially important to communicate effectively with these people, for your well-being and theirs.

-DON’T say “I can’t work because of illness ” when someone in public you don’t know well asks “What do you do?”

This is like a very bad chess move. What are people supposed to say to it, except for “That’s a bummer” or “Explain this to me, since you look fine to me.”

Then the conversation becomes about how your life is depressing or about defending your assertion that you can’t work despite the fact that you look alright.

This conversation will not go well, because people who have not been touched by invisible illness tend to have a hard time understanding that someone could be physically able to get dressed and leave the house on one occasion but not be able to do productive work in a regular job.

-DO have a quick answer for whenever someone asks you “What do you do?”

People don’t really care how you fund your living expenses (or if they do they are weird). Instead, they are probably asking, “Let’s talk about you” or “What type of person are you?” or “What might we have in common?” Unless they are going to ask a lot of details, they don’t even need to know that you don’t make money.

You could spin your life however you want. Some snappy answers:

• I have _(chronic illness)_ and treating it takes a lot of time, and it took me a lot of energy to make it to this _(party/event/outing)_ but I am glad to be seeing some other people and enjoying myself here.
• I was doing great in life with X and Y, but then I got felled by this awful disease and now it’s all I can do to make it out a few times a week like this. But I’m still interested in Z.
• Well, the last time I was able to work I was a _(career)_, but due to unpredictable health I have not been able to work since _(time)_, but I am still interested in _(topic)_.
• Oh, I’m a _(career)_. I have to work (from home/part time) and I can’t take on too much because I have a chronic illness, but I still manage to do something.

-DON’T explain exactly why you can’t work.

The reasons might not make sense to the listener, and if you mention any cognitive or nervous system symptoms, you might make yourself look even weirder (Many people have a hard time believing that illness can affect the brain nervous system, since we tend to think that these things are “us” and not our bodies).

Also, offering specific reasons why you can’t work (hard to leave the house, hard to concentrate) triggers some people into wanting to solve your problem by thinking of creative ways to get around your limitations. For example:

A: I can’t work because I can’t leave the house.

B: But could you work from home?

A: No, I’m too tired and I can’t concentrate.

B: But couldn’t you do a mindless job?

A: No, I don’t know of any such jobs that aren’t scams that I could obtain and hold without being fired.

B: But you’re talking to me now, so you could talk on the phone?

A: Forget it, this is going nowhere.

-DO explain that many tasks which are easier than work are prohibitively hard for you.

When trying to explain your situation to someone who needs to know, like a friend or family member, you might mention if you have a hard time: leaving the house, driving, bathing, cooking, standing up, etc.

This shows the person that you are already pushing yourself in your life as it is. Just because it would take no effort for THEM to live as you are living (not working) doesn’t mean that it does not take substantial effort for YOU to live as you are living (if you are doing any self-care, treatment research, anything around the house, etc.).

Dr. Larry Sharp of Fort Worth, TX uses an excellent fatigue questionnaire for assessing fatigue in his patients. Instead of just asking “How tired are you from 1 to 10″ it asked how often fatigue interferes with doing a variety of activities. It was shocking to see it there on paper how much fatigue was affecting my ability to do very basic activities.

If anyone questions the level of your illness and fatigue, you might make a chart for them showing from 1 to 5 or 1 to 10 how often your symptoms interfere with each of a few dozen daily activities.

-DO explain how you already do many things that are a challenge for you.

Maybe the listener doesn’t realize that you are already pushing yourself quite a lot.

You could mention:

• Merely talking with you right now is a challenge for me and I will need to rest afterward.
• Doing my own treatment research and managing my treatment is more than I think I can do, but I am doing it because no one else can do it for me.
• I don’t feel up to traveling or cooking, but I do them anyway because I have to go to appointments, eat, etc.
• DON’T assume that your life will make sense to other people the way it makes sense to you.

You might have had your chronic illness for years and you might be used to it. But things you see as no big deal might seem awful to someone who is hearing about them for the first time.

Even with family or friends who see you often, don’t assume that they will understand how certain symptoms aren’t a big deal to you OR that certain issues are much worse than they sound.

-DO make it clear that besides the parts you can’t change, your life is alright, and you are handling things well.

Even if you feel sick much of the time, can’t work, miss out on things, and so forth, you still might be handling your situation in a nearly optimal way.

It’s a fallacy to think that if someone’s life is bad, they must be doing something wrong. Sometimes situations are simply hard.

Outsiders might not realize how your efforts are already making your life much better than it could be. You might want to make a comparison: If not for X or Y that I am doing, I might be in a worse situation.

-DON’T participate the power dynamic in which the well person is supposed to give advice to the person with invisible illness.

In the past, if someone asked, “Are you getting out enough?” or “I think you should be doing X,” I would try to defend myself, saying, “I’m already doing something similar to that,” or “You know you’re right, I should do that more.” I took a deferential position, as though they knew what they were talking about and I didn’t. If things were going well for them but not for me, I should listen to their advice, right?

Wrong. It’s a common misconception that well people can and should offer advice to sick people. Being well does not necessarily mean that a person is doing things well in their life; nor does being sick imply that a person is making bad choices. If a person’s life is hard or if they are unhealthy, it does not necessarily mean they are doing anything wrong. Perhaps they were simply unfortunate.

-DO (perhaps) forestall judgment by anticipating it.

If you say early in the encounter, “I know it has to seem to you like I’m not making enough of my life or not getting out enough, but I’m truly doing what’s best for me and the most I can do,” then the listener might give pause before suggesting the very idea you’ve just said is not true.

Sometimes, this will even prompt the listener to relieve your fears that they think badly of you. They might respond, “Of course I don’t think that! I actually think you’re doing a great job and I’m impressed.”

-DO compare your situation favorably to how things used to be or how things would be.

This makes it into a success story: “I had this problem or was in danger of experiencing these bad things, but then I used my ingenuity or was blessed with fortunate circumstances that make my life much better.”

A success story is usually a good piece of conversation (“Oh, that’s wonderful,”) or else a conversation-ender, since the problem is already solved and contained. Either way, portraying your current life as a success story helps you to avoid unwanted advice.

For example:

• I used to have no idea what was wrong with me, but then I got a diagnosis.
• I used to be very isolated by illness, but then I joined support groups and started keeping up with old friends.
• And a good one for closing: I used to feel bad when people thought I should work or get out more, but then I read this article and now I can respond with confidence.”

Andrea Runyan is a writer in Boston, Massachusetts. She studied math and biology at Stanford University, graduating with a Bachelor of Science in Mathematics and at Stanford, she wrote an opinion column for four editions of The Stanford Daily. She is currently writing a book about communicating with friends and family about chronic or invisible illness. See her blog at Andrea Runyan

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Our Favorite Resources! Associations, Foundations, and More!

This is a list we put together with some of our favorite organizations. If you have one you would like added, leave a comment below and we will update the list soon.

(This collection of links is copyrighted. Please don’t copy and paste it to your web site.)

• Advocacy for Neuroacanthocytosis Patients http://www.naadvocacy.org/
• Advocacy for Patients with Chronic Illness, Inc http://www.advocacyforpatients.org/
• Agency for Healthcare Research and Quality www.ahrq.gov
• Alliance of State Pain Initiatives http://www.aspi.wisc.edu
• American Academy of Hospice and Palliative Medicine http://www.aahpm.org
• American Academy of Orthopaedic Surgeons http://www.aaos.org
• American Academy of Pain Management http://www.aapainmanage.org
• American Academy of Pain Medicine http://www.painmed.org
• American Arthritis Society http://www.americanarthritis.org
• American Autoimmune Related Diseases Association http://AARDA.org
• American Behcet’s Disease Association http://behcets.com
• American Cancer Society http://www.cancer.org/docroot/home/index.asp
• American Celiac Society http://www.williamshaffer.org/acs/about.htm
• American Chronic Pain Association http://www.theacpa.org
• American College of Physicians http://www.acofp.org
• American College of Rheumatology http://www.rheumatology.org
• American Diabetes Association http://www.diabetes.org
• American Fibromyalgia Syndrome Association http://www.afsafund.org
• American Geriatrics Society http://www.americangeriatricssociety.org
• American Headache Society http://americanheadachesociety.org
• American Lyme Disease Foundation http://www.aldf.com
• American Medical Association http://www.ama-assn.org
• American Osteopathic Association http://www.do-online.org
• American Pain Foundation http://www.painfoundation.org
• American Pain Society http://www.ampainsoc.org
• American Porphyria Foundation www.porphyriafoundation.com
• American Society of Anesthesiologists http://www.asahq.org
• American Society of Interventional Pain Physicians http://www.asipp.org
• American Society of Law, Medicine and Ethics http://www.aslme.org
• American Society of Physical Medicine and Rehabilitation http://www.aapmr.org
• American Society of Regional Pain Management http://www.asra.com
• Amputee Coalition of America http://www.amputee-coalition.org
• APS Foundation of America, Inc. http://www.apsfa.org
• Arthritis Foundation http://www.arthritis.org
• Association of Gastrointestinal Motility Disorders, Inc.http://www.agmd-gimotility.org/
• Association of Oncology Social Work http://www.aosw.org
• Autoimmune Information Network http://www.aininc.org
• BAMS http://www.bandagainstms.org
• Band Against MS-Clay Walker http://www.bandagainstms.org
• Band-Aids and Blackboards http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/
• Beyond Chronic Pain http://www.beyondchronicpain.com
• Board Certified.com directory of those board certified physicians who wish to present an elevated Internet presence to the patient community http://Board Certified.com
• Bridge Medical http://mederrors.com
• But You Don’t Look Sick http://butyoudontlooksick.com
• Caring Bridge http://caringbridge.org
• C-Cange (cancer focus) http://www.c-changetogether.org
• CFIDs Association of American http://www.cfids.org/
• Celiac Sprue Association http://csaceliacs.org
• Centers for Disease Control and Preventionhttp://www.cdc.gov
• Center for Medical Consumers www.medicalconsumers.org
• Crohn’s and Colitis Foundation www.ccfa.org
• Chron’s Adventure http://CrohnsAdventures.org
• ChronicBabe http://chronicababe.com
• Citizens for Patient Safety http://citizensforpatientsafety.org/
• Compassionate Friends – coping with death of child http://compassionatefriends.org
• Conquering Chiari http://www.conquerchiari.org
• ConsumerLab http://ConsumerLab.com
• Consumer Health Information Corporationwww.consumer-health.com
• Consumers Advancing Patient Safety (CAPS) www.patientsafety.org
• Empowered Patient Coalition http://empoweredpatientcoalition.org
• Diabetic Mommy http://www.diabeticmommy.com
• DiagKNOWsis http://www.diagknowsis.org/
• Digestive Disease National Coalition http://www.ddnc.org
• Disabled American Veterans http://www.dav.org
• Dysautonomia Foundation http://www.familialdysautonomia.org
• Dysautonomia Information Network http://www.dinet.org
• Dystonia Medical Research Foundation http://www.dystonia-foundation.org
  
• Ehler-Danlos National Foundation (connective tissue disorder) http://www.ednf.org
• Ehlers Danlos/Hypermobility Syndrome http://teens.hypermobility.org
• Every Patient’s Advocate – Trisha Torrey http://healthcarespeaker.org/
• Facial Pain Association http://fpa-support.org
• Fibromyalgia http://www.fmaware.org
• For Grace http://www.forgrace.org – Reflex Sympathetic Dystrophy
• Healing Well http://healingwell.com
• Health & Disability Advocates http://hdadvocates.org
• Health Grades http://www.healthgrades.com
• Hereditary Neuropathy with liability to Pressure Palsies http://www.hnpp.org
• Hospice Patients Alliancehttp://hospicepatients.org
• Hospice Foundation of America http://www.hospicefoundation.org
• IDEAS Kids – Intestinal Diseases http://ideaskids.com
• IDF: Immune Deficiency Foundation, www.primaryimmune.org
• IG Living Magazine – Immune Gobulin http://www.igliving.com
• Institute for Safe Medication Practices http://www.ismp.org/
• Intracranial Hypertension Research Foundation http://www.ihrfoundation.org
• Intercultural Cancer Council http://www.iccnetowork.org
• International Association for Hospice and Palliative Care http://www.hospicecare.com
• International Association for the Study of Pain http://www.iasp-pain.org
• International Foundation for Functional Gastrointestinal Disorders (IBS) http://www.aboutibs.org
• International Stills Disease Foundation http://stillsdisease.org
• InvisABLE Illness http://www.invisableillness.com/
• Invisible Disabilities Association http://ida.org
• Joni and Friends http://joniandfriends.org
• Lance Armstrong Foundation http://www.livestrong.org
• Life Without Limbs http://lifewithoutlimbs.org
• Lung Cancer Alliance http://www.lungcanceralliance.org
• Lung Transplant Foundation http://lungtransplantfoundation.org
• Lupus Foundation of America, Inc. http://www.lupus.org
• Magic Foundation www.magicfoundation.org
• Maryland Pain Initiative http://www.marylandpaininitiative.org
• Mayo Clinoic http://www.mayoclinic.com
• Mastocytosis Society http://www.tmsforacure.org/
• Medically Induced Trauma Support Services (MITSS) www.mitss.org
• Medicarehttp://www.medicare.gov/
• Medline Plus Health Informationhttp://medlineplus.gov/
• Medscape http://www.medscape.com/home
• Medwatch – the FDA Safety Information and Adverse Event Reporting Program http://www.fda.gov/medwatch/index.html
• Mental Health Ministries www.MentalHealthMinistries.net.
• Myasthenia Gravis Foundation of America http://www.myasthenia.org
• Mastocytosis Society www.tmsforacure.org
• National Alliance for Mental Illness http://nami.org
• National Coalition for Cancer Survivorship http://www.canceradvocacy.org
• National Comprehensive Cancer Network http://www.nccn.org
• National Family Caregivers Association http://www.nfcacares.org
• National Fibromyalgia Association http://www.fmaware.org
• National Headache Association http://www.headaches.org
• National Hospice and Palliative Care Organization http://www.nhpco.org
• National Institutes of Allergy and Infectious Diseases (NIAID) http://www3.niaid.nih.gov/topics/lymeDisease
• National Institute of Arthritis and Metabolic Diseases (NIAMD) http://www.niams.nih.gov
• National Institutes of Health (NIH)http://health.nih.gov/
• National Invisible Chronic Illness Awareness Week http://InvisibleIllnessWeek.com
• National Kidney Foundation http://www.kidney.org
• National Multiple Sclerosis Society http://www.nationalmssociety.org
• National Necrotizing Fasciitis Foundation http://www.nnff.org
• National Organization for Rare Disorders http://www.rarediseases.org
• National Ovarian Cancer Coalition http://www.ovarian.org
• National Pain Foundation http://www.nationalpainfoundation.org
• National Patient Advocate Foundation http://www.npaf.org
• National Prostate Cancer Coalition http://www.fightprostatecancer.org
• National Stroke Association http://www.stroke.org
• National Vulvodynia Association http://www.nva.org
• National Women’s Health Resource Center http://www.healthywomen.org
• Pain.com-for professionals and patients http://www.pain.com
• PainPathways.org http://www.painpathways.org
• Pain Relief Network http://painreliefnetwork.org
• PAINWeek http://www.painweek.org/
• Pancreatic Cancer Action Network http://www.pancan.org
• Partners Against Pain http://www.partnersagainstpain.com
• Patient Advocate Foundation http://www.patientadvocate.org
• Patients Like Me http://patientslikeme.com
• Pharmacy Checker http://PharmacyChecker.com
• Power of Pain Foundation http://www.powerofpain.org
• Power Over Your Pain http://www.poweroveryourpain.com
• Prevent Cancer Council http://www.preventcancer.org
• PSC Partners Seeking a Cure http://www.pscpartners.org/
• QuackWatch http://www.quackwatch.org
• Race Against Pain http://www.RaceAgainstPain.com
• Reflex Sympathetic Dystrophy Syndrome Association http://www.rsds.org
• Rest Ministries Chronic Illness Pain Support http://restministries.com
• Saracoma Foundation of America http://www.curesarcoma.org
• Sceptor Pain Foundation http://www.sceptor.org
• Scleroderma Foundation http://www.scleroderma.org/
• Sickel Cell Disease http://www.sicklecelldisease.org
• Spondylitis Association of America http://www.spondylitis.org/
• Susan G. Komen for the Cure http://www.komen.org
• Texas Pain Society http://texaspain.org
• The Leukemia & Lymphoma Society http://www.leukemia-lymphoma.org
• The National Foundation for the Treatment of Pain http://www.paincare.org
• The National Migraine Association http://www.migranes.org
• The National Pain Foundation http://www.nationalpainfoundation.org
• The Prostate Net http://www.prostate-online.org
• United Spinal Association http://www.unitedspinal.org/
• United States Bone and Joint Decade http://www.usbjd.org
• Voice 4 Patients information and resources for those who have been victimized by healthcare error http://www.voice4patients.com/
• WEGO Health Activists http://community.wegohealth.com/
• Wilson’s Disease Association http://www.wilsonsdisease.org/
• World Institute of Pain http://www.worldinstituteofpain.org

INTERNATIONAL________________

• Asociacion Argentina para el Estudio del Dolor http://www.aaedolor.org.ar
• Associazione Italiana per lo Studio del Dolore http://www.aisd.it
• Australian Pain Society http://www.apsoc.org.au/interest.html
• British Pain Society http://www.britishpainsociety.org/
• Canadian Pain Society http://www.canadianpaincoalition.ca
• Egyptian Pain Society http://www.egyptianpainsociety.org
• European Federation of IASP Chapters http://www.efic.org
• Turkish Society of Algology http://www.algoloji.org.tr

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Popularity: 13% [?]

What Exactly Is A Chronic Illness And Who Defines It?

by Lisa Copen

If you were to walk up to a person on the street and ask him what he believed the difference was between illness and health, chances are that you would likely receive a fast reply about how health is when the body works correctly and illness is when it does not.

When one starts to live with daily symptoms that resemble a chronic condition, however, the necessity of needing to understand the difference between a healthy body and a chronically ill body becomes much more important. It comes as a surprise to many people who are diagnosed with illnesses such as chronic fatigue syndrome, that many diseases are still surrounded with great mystery, even from the medical community. Long-term symptoms are not fully known.

This does not negate the need, however, for one to seek answers. When the definitions of health and illness significantly impact your life, it obviously becomes a more personal issue. And the validation to have your pain recognized by both friends, as well as medical professionals, can become quite important. One needs someone to listen and diagnose symptoms of his or her illness.

The definition of chronic illness seems like it would be a simple answer even though there are thousands of types of chronic illness: Health is feeling good; illness is the lack of health or appearing overweight or out of breath. But consider the fact that there are many people who actually are quite ill, but who appear to be in great health. How many times have we heard of a perfectly healthy forty-year-old man having a heart attack? Or a young woman having a stroke that is completely unexpected since she runs marathons annually?

So if one’s appearance or “feel good” measurement doesn’t work accurately to decipher the difference between health and illness what do we use to determine it?

Those who cope with daily chronic pain due to a chronic illness may be surprised to hear the physician ask, “Do you think you can be a healthy chronically ill person?”

According to Derek Yach, who presented on the topic of “Health and Illness: The Definition of the World Health Organization,” both societies and individuals have a variety of definitions of what is regarded as health. These definitions have all undergone scrutiny and criticisms.

How can health be determined after all? For example, does life expectancy or infant mortality rate statistics determine a society’s health? While we serve up lunches for our children full of sugar and poor carbohydrates, other groups turn away from that cause and instead pressure McDonald’s to remove toys from Happy Meals and have a McDonalds calorie list. While the toys may be nice perks, not every mother is Googling the McDonalds Happy Meal toy schedule. Moms are still saying, “Eat your food and then you can play.”

Are we setting unrealistic expectations on people to believe that everyone can obtain some level of “health”? Defining health and illness will always be a vague science because it is often the sociological definition and each country will have difference measurements to determine their level of health and illness, oftentimes emphasizing health (or illness) with certain intentions for international purposes.

And so this brings us once again to the question of “What is a chronic illness?”

Medically speaking, a “chronic” condition can be defined as any medical state of pain or symptoms that last 3 months or longer. This definition is provided by the U.S. National Center for Health Statistics. Chronic conditions typically have symptoms or pain that persists, regardless of treatment, such as the autoimmune illness chronic fatigue syndrome, multiple sclerosis, lyme disease, Alzheimer’s disease, migraines, or back pain from an event like a car accident.

Despite the fact that America may be well known for their well-being, nearly 1 in 2 American live with a kind of chronic pain, condition, or illness. This can include anything from chronic migraines to disabling back pain. This is according to the report “Chronic Care in America: A 21st Century Challenge” completed by the Robert Wood Johnson Foundation.

Our society has firmly held the opinion that the commonly advertised medications will cure our illness or at least make all symptoms soon disappear. And we are told this is true: that we just need to follow the advice of the pharmaceutical companies and soon we will be as good as we used to be!

It is not unusual for us to believe that pain management is not the “management” of any pain but the complete and total removal of the pain. And curing one from that pain indefinitely. If a medication does not give us back our life as it was before illness, we assume the medication simply did not work; not that it worked to the best of its ability.

The World Health Organization (WHO) was established in the year 1948 and at that time the word health was given the definition as “being a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.” According to the online encyclopedia, Wikipedia, it defines the word illness as “a state of poor health.” In fact, this source states that “Illness is sometimes considered a synonym for disease.”

Many people would claim that true health is more about having a peaceful state of mind; an attitude about life that includes joy. They would say that health is not defined what your lab test results may expose about your body and its ability to function.

This can be a sensitive issue. There are healthy people who live with extreme chronic illnesses, but they stay as fit as possible in spite of their conditions. Other people may have wonderful genetics and be very healthy according to lab tests, and yet they put their body under great physical stress. And then if they get an illness, was it caused by the stress or was it an illness they likely would have gotten eventually anyway?

This starts to get into the area of the definition of social health, trying to understand which comes first, the stress or the illness? There are a variety of social factors that determine health.

To wrap up the topic, it can be difficult in our society to find a solid definition for chronic illness, because, depending on who you ask, the odds are that a variety of terms will be given. It’s true that chronic illness has a long list of frustrations and burdens; I know this because I have lived with illness for nearly two decades. But I also try to understand that joy is a choice I can decide to focus on. And while lab tests can determine if I have an illness or not, and its severity, no one has the power to take away my joy or how I find it each day.

Here is a 2-minute video where I, Lisa Copen, share some surprising news about who believes they don’t know anyone who lives with illness!

Lisa Copen is the founder of Rest Ministries and National Invisible Chronic illness Awareness Week, as well as the author of Why Can’t I Make People Understand? Chronic illness doesn’t have to be depressing! Subscribe to receive daily emailed encouragement from the largest Christian outreach for people with illness. Don’t miss Rest Ministries great books and gifts we’ve selected for people coping with illness.

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How to Give an Ill Friend Love, Understanding, and Support

I have lost many friends since developing Fibromyalgia. I don’t know why they have chosen to abandon me in my time of need, because they did not tell me. I can only assume it was because being a friend to a chronically ill person is difficult. But it doesn’t have to be! I don’t ask for much; just your love, understanding, and support.

It’s ok to ask me how I’m doing. However, I’m not going to lie and say I feel “fine” just to make you feel better. I’m not fine. I don’t feel fine. I’m not doing fine. I hurt everywhere, I can’t sleep, and it depresses me. But it’s still ok to ask me, because it shows me that you care.

Please, please don’t ask me if I’m getting better. Once I figure out how to manage my pain and other symptoms, the entire world will be the second to know. Until then, everything changes from day to day, minute to minute, even second to second. It’s all about learning how to manage the pain and other symptoms when outside stressors, the weather, and sometimes nothing at all can change where it hurts, how it hurts, and how much it hurts.

I beg of you not to tell me that I need to exercise more or to just “walk it off.” I do what I can – light stretching, moving around, and now even water aerobics. It’s excruciatingly painful. Unless you can feel my pain and understand exactly how my body reacts to every movement, unless you have Fibromyalgia as well as the myriad of spinal conditions from which I suffer, unless you are me, you have no idea what will make me feel better. My son does the best he can in this area, but he doesn’t tell me what I should do to feel better. He asks if there is anything that will help – “Will a bath help?” “Will an ice pack help?” “Will your heating pad help?” “Will your TENS unit help?”

I’m not asking for your pity. I’m asking for your understanding and compassion. If you really want to help me, just talk to me, make me laugh, focus on my abilities instead of my disabilities. If I need to vent, just listen (and it helps to validate my ventings). There is no right thing to say. In fact, more often than not there is nothing that can be said to make things right, make me feel better physically, or change my life or perspective. But one happy or funny moment could change my day. However, saying nothing at all, not even trying, can hurt me deeply. I am, after all, human.

If I’m crying, it’s still okay to talk to me. I don’t cry (much) from the pain. I mostly cry because I’m stressed out, exhausted, overwhelmed, angry, feeling emotional, or just plain frustrated. Sometimes it’s just one remark that sends me over the edge. At any rate, I cannot control this any more than I can control the weather. Again, I only ask for your understanding and compassion.

In short, don’t avoid me because you don’t want to deal with my issues. I won’t force them on you and, for the most part, won’t even mention them until you ask. Unless you’re my Momma. I seem to unload all my pain and symptoms onto my Momma because she’ll actually listen to me and not judge.

Which brings me to my final rant: don’t judge me. I don’t have control over my symptoms, which includes my inability to remember what I need to do as well as function as a normal person.

Keep in mind that Fibromyalgia it is incurable. And ask anybody who suffers from FMS and they will tell you that it is, for the most part, resistant to medications. If I had to list the number of medications I have to take in order to function (and I use that term lightly), you would be shocked. But, please, don’t tell me that I take too much medication. I have ONE doctor prescribing this medication to me, we review my prescriptions every time I see him, and, as he spent years in medical school to become a doctor, I trust his opinion. Leave my medications to him, as he knows what he’s doing and has my best interests at heart.

I can understand that maybe some feel FMS is not such a big deal. After all, it’s not cancer. It’s not heart disease. So, it’s not considered fatal by those standards. However, there are people who suffer from FMS who consider suicide as their only option for relief. Dr. Jack Kavorkian assisted suicide in Fibromyalgia patients. People who suffer from Fibromyalgia feel helpless, hopeless, and unable to obtain any relief from pain and the myriad of other debilitating symptoms associated with FMS (which stands for FibroMyalgia Syndrome). So, it is not life-threatening by the classic definition, but don’t say this to fibro sufferers. This is not a harmless disease.

While people who do not suffer from Fibromyalgia, Chronic Fatigue Syndrome, scoliosis, or any other invisible chronic illness may have a lot of advice for those of who do, we ask that you, unless you are a doctor or pain management specialist in the treatment of these diseases and disorders, please keep it to yourself. We are doing the best we can to manage with what we are given. We don’t want your advice; we don’t want your pity. We want your love, your understanding, your company, and your support.

National Invisible Chronic Illness Awareness Week is essential to help those who do not suffer to understand; and crucial to those who do suffer to find camaraderie.

Jessica Barto has suffered from symptoms of FMS and CFS since she was a teenager. Was diagnosed with Spondylolisthesis in 1993, and FMS in 2007. She invites you to visit her blog, Fibro Blog.

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What Others See Isn’t Our Reality

Regarding “verifying” invisible illness, I’ve realized that outsiders accept only two forms of evidence:

1) The importance accorded to the illness from the mainstream medical establishment, media, and society, and

2) What they can see with their eyes – a rash, sunken eyes, fragile skin, etc. Unfortunately many people with CFIDS and Lyme look fine.

This leaves the most important form of evidence inadmissible and of almost no weight to other people – how you feel and your reports about your daily quality of life and abilities.

Really, people will NEVER pick this up from looking at you. They won’t notice, hey, she put down her book after 10 minutes because that was as long as she could concentrate. Or she seems to feel tired even while she is lying on the couch.

Instead, they might see only, “Wow, she’s enjoying herself reading and sitting on the couch while I have to work. That’s not fair.”

Only when it’s severe, such as you can’t get out of bed or take care of yourself is your invisible illness more visible, and even then, you might be doubted unless you look very ill.

I’ve been surprised at how even during a very hard week of herxing when I couldn’t concentrate enough to read, was in terrible pain, and had a lot of trouble merely taking care of myself and making it through the day; my dad said it looked to him like nothing was wrong with me. If how I’ve felt this week hasn’t made it across to him, I thought, nothing will!

I think it says terrible things about our society that we discount personal reports as a form of evidence about someone’s abilities.

Is it that we are heavily influenced by psychiatry, with the ideas of hypochondria and illness for gain in our minds?

Or is it our hyper-vigilance to people getting something they don’t deserve (such as our collective anger about illegal immigrants getting some social services even though they pay only some of the taxes we pay and not all of them)?

Andrea Runyan studied math at Stanford University and then promptly came down with tick-borne infections on top of pre-existing fatigue. She writes about chronic illness at her blog.

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Invisible Illness Week Features Virtual Conference and Fresh Awareness

CONTACT: Ms. Lisa Copen, founder & director
858-486-4685
www.invisibleillness.com

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Invisible Illness Week Features Virtual Conference and Fresh Awareness

Did you know that nearly 1 in 2 people in the USA have a chronic illness?* And despite assumptions that most illnesses are a mild inconvenience, if you ask those who live with a disease or chronic pain, you will find it drastically changes their lives. An invisible illness can be a disease that is nearly always unseen like chronic fatigue syndrome (CFIDS) or heart disease to one that progresses from invisible to visible, such as multiple sclerosis or rheumatoid arthritis. One thing is certain: those with chronic illness desire to connect with one another and live life to the fullest. . . but they may not be able to travel and sit through a typical conference.

This is where National Invisible Chronic Illness Awareness Week, September 14-20, 2009 excels, offering a 5-day virtual conference, where all speakers are available to listen to LIVE or later (all session are archived.) Monday through Friday, 9/14-9/18, anyone can log on to www.invisibleillnessweek.com and hear illness experts 4 times a day and even call in with their questions after the presentations. Last year’s shows have had over 12,000 listeners and are also available on iTunes.

There are a wide variety of topics including:
• Finding Health Insurance Coverage with a Pre-existing Condition
• Coping with Chronic Illness in Your Marriage
• Having Your Own Business When You Are Chronically Ill
• Simplifying Your Home and Housework
• Parenting When You are Chronically Ill – Chaos and Confessions

The theme this year is “A Little Help Gives a Lot of Hope.” Thousands of people have joined the cause through social media tools like blogging for the cause, a blog tour, a Facebook Cause and fan page, and Twittering about the event with the hashtag #iiwk09.

Lisa Copen, 40, is the founder of National Invisible Chronic Illness Awareness Week and has lived with rheumatoid arthritis and fibromyalgia for sixteen years since the age of 24.

“We all live with a variety of symptoms and the severity of the pain often changes or moves from one area to another on a daily basis,” says Copen. “But there is an underlying feeling that those we love the most don’t fully comprehend what we cope with minute to minute or the choices we make just to ‘have a life’. This can be more devastating to some than the actual physical pain.”

Copen, who was the recipient of the Audience Choice Our Bodies Ourselves Women’s Health Hero Award this spring says, “We hope to unite some of the millions of people who live with chronic pain and illness silently by offering an oasis of hope and understanding. Illness is never fun, but we hope to connect people to encourage one another, as well as host some fabulous workshops to help people live their best life possible.”

For details visit the web site, http://www.invisibleillnessweek.com

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*Source: Chronic Care in America: A 21st Century Challenge Revised

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CFIDS Asks “What Do You Wish People Understood?”

The CFIDS Association of America recently asked in a survey, “What is the one thing you’d like your family/friends to really understand about CFS?”

Unfortunately, we could only find the answers in their Facebook notes, here, but you can read more about the survey results at their web site here.

Thumbs up for CFIDS Assn for creating more awareness.

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Coping With Crisis on Top of Chronic, Part 1

A couple of weeks ago I was fighting the first day of a migraine (it ultimately lasted 13 days in spite of medical efforts to subdue it) when I got a phone call from my lab. There had been an issue with my recent blood work and it needed to be redrawn as quickly as possible. I figured I could wait until the headache and accompanying spotty vision abated enough to allow me to safely drive, then I could manage to get myself to the lab that was 10 minutes from home, sometime later in the week.

Unfortunately, as the lab tech continued to apprise me of the situation, I realized that the vial that needed to be redrawn was one I had done nearly three weeks earlier at the specialty lab over a windy mountain pass nearly an hour away.

My phone rang at about 11 on a Tuesday morning and I had to have the redraw prior to an IV I would receive that next Sunday. Because of Post-Infectious Chronic Fatigue Syndrome (ME/CFS), my driving ability is limited to about half an hour from home and only on relatively straight roads, even on my best of days. The location of the lab already meant I would have to call in outside help to get it done. Not only would I need help, but I would need to be rather demanding about how and when I received that help because the specialty lab only does these specific draws on Mondays, Tuesdays or Wednesdays before 1 PM. I had to somehow either get myself to the lab within the next two hours that very day, or hit a specific five-hour window the next.

If I could not arrange childcare, someone to drive me, and cope with the effects of motion sickness on top of my migraine misery before 1 the following afternoon, I would have to try to reschedule my IVIG therapy for a second time, the treatment we had fought for the past 18 months for insurance approval to be able to begin!

My mom, who was herself dealing with pre-op workups for a knee replacement surgery, helped me figure out a plan for my dad to drive me and three kids up the mountain the following morning and still get back down to town in time for my x-rays at the orthopedic surgeon’s office the next afternoon. I certainly didn’t want to miss that appointment and delay my hopes of getting my broken foot out of a cast after 10 weeks of slow healing! Before the week was over, Mom would also end up driving me to my primary care doctor’s office for migraine shots two days in a row.

As I tried to juggle all those different medical demands, I joked with my mom that I never knew that being sick could be such hard work!

Do you ever feel like living with a chronic illness is a full-time job? And as if managing your “regular” health challenges isn’t complicated enough, what do you do when a crisis situation comes along on top of the daily juggle of pain, unpredictable symptoms, medical care and the financial strain that can accompany it all?

Life doesn’t just stop because of illness. Accidents, sorrows, trials and tragedies (as well as joys, victories, accomplishments and achievements) of all proportions still happen around and to us. When just coping with chronic already overwhelms us beyond our limitations, how do we keep from being done in by crisis, the surprise “extras” that come along?

I certainly haven’t figured out all the answers, but after living my entire adult life under the shadow of Chronic Fatigue Immune Dysfunction Syndrome (ME/CFS) and taking some crisis journeys through unemployment, infertility, a few outside medical emergencies such as this broken foot, and several encounters with death, grief and loss, I have learned a handful of coping skills along the way. When crisis hits on top of chronic, here are a few simple survival tips I can fall back on:

1. Quiet Time.
This is a non-optional survival skill for me in daily living with chronic illness. While I might be able to scrape by for a few days without making scheduled downtime a priority, I can’t function on a continual basis without it. In a crisis situation I might be tempted to try to push through on adrenaline for a while, but if don’t make a conscious effort to slow down sooner rather than later, I will pay for it with a significant physical and emotional crash that will be hard to recover from. So while it may feel like there is no time to even catch my breath, in times of crisis I must be aware of my need for regular “time outs”.

There are two ways that I implement this concept in my life. The first is through daily “quiet time” every afternoon in our home. My kids are 9, 6 and 3 and know that every afternoon we will pile into my bed together for story time (sometimes I can barely get through a short, simple picture book that I ask them to read to me while on better days I might be able to read two or three chapters of a novel with them) then everyone will go to their own rooms and sleep or read or play quietly for at least 90 minutes. We have done this since the oldest was a baby. (I encourage moms who are newly trying to implement this technique with older kids who might be resistant to the idea, to start with even just 15 or 20 minutes and work your way up.) On days when I can barely function and wonder how I will ever make it through the day, I know that if I can hang on until quiet time, I will have a chance to recharge at least a bit; on these days quiet time sometimes becomes 2 or 2½ hours rather than just our regular 1½.

On a spiritual level I need daily quiet time as well. God calls me to “Be still, and know that I am God…” (Psalm 46:10). In my weakest moments it might be all I can give to simply lay still and try reflect on who God is, being thankful that He loves me, broken as I am. Other times I can make a more active pursuit of knowing God by spending time reading and meditating upon His Word (my Bible), by praying (simply talking to God) or journaling my thoughts to and about Him. It is only in stilling this most inward part of my soul where I find the greatest refreshment and benefit of quietness and intentional rest. The words of Isaiah 30:15 are so very true; in quietness is where I find my strength.

2. Laughter is the Best Medicine.
Cliché, but true none the less. I can always tell when my husband is feeling stressed, especially over my medical needs, because it is in these times that he most frequently turns to humor to help us through. I cannot even begin to count the times he’s had me giggling with his tongue depressor puppets, or exam glove balloons, or silly comments only the chronically ill could love, as we’ve sat in cold exam rooms waiting for doctors to show up.

Going through fertility treatments I had to get really creative about finding ways to laugh at hormone injections and very invasive testing and treatments. I remember driving across town one day with a sperm sample in my bra (to keep it the correct temperature) and bursting into semi-hysterical laughter at the thought on how on earth I would explain that to an EMT if we were to get in a car accident on the way to the clinic and they would have to cut me out of the wreckage with the Jaws of Life! Sometime laughter is the only way to avoid tears.

Tears and laughter can co-exist as well! Funerals are typically solemn times of amplified grief. But have you ever found those in that inner circle of family and closest friends gathered around together and laughing at funny memories of their loved one’s life? Sometimes laughter comes through tears, but can be just as healing.

3. Support Network.
Did you cringe a little when I was talking about my husband’s playful support at my doctor’s appointments, my dad’s willingness to be both chauffeur and babysitter for my distance blood draw, or what it’s like to be in an “inner circle” of family and friends at a funeral? While I’ve been more blessed than most in this area, I know that support doesn’t typically come easily. We’ve had seasons when we didn’t live near extended family, had few friends, were not involved in a church, and my husband worked 80-90 hours a week. I felt incredibly alone and afraid without anyone to lean on. It was then that I learned just how important it was for me to make the effort to find/create a support network for myself (even when I felt like I have no energy to make that effort)!

Surrounding yourself with support is ideally accomplished before you are faced with a time of crisis, but often seems hard to find. I think this is true because others may not see or truly understand our need for help through the daily grind of chronic. It can be humiliating to ask for help too, even when we are crying out on the inside, “I’m so alone!” When we are faced with crisis, sometimes (not always) support more readily presents itself. When it does, it’s important to take that help offered, though we would all rather be self-reliant enough to not need it.

OK, so you are ready and willing to accept any support you can find, but can’t find any. Now what? Your doctor, hospital, local social services or place or worship are all possible starting places when looking for a support network. I’ve said over and over that I don’t know how people survive without the support of a local church family. Even though I have great family support now, including my parents who moved from out of state just to be near enough to help, I am still thankful for the additional help and encouragement from church friends and local support group members. Being involved in a supportive network also lets me feel like I have something to give back to others, maybe not in helping meet physical needs, but there is hope and purpose simply in sharing my story and showing someone else that she is not alone either.

Another huge advantage we have in the age of the internet is that there are support websites and message boards for just about any issue you can imagine, even those “one-in-a-million” type illnesses. If you can’t find an existing one to meet your needs, there are many free places to create your own online community. When you become a part of an online support network, you may not find someone in your own backyard who will be there to drive you to your next doctor’s appointment (but then again, you may make just such a connection!) but you probably will find many others who personally understand the fears and frustrations of your challenge, be it chronic or the crisis variety. I participate in several online support networks such as Rest Ministries (support for any form of chronic pain/illness), Hannah’s Prayer (infertility and pregnancy/infant death support), and many disease-specific forums.

I realize these are only three small places to start the coping process, but this post is already getting quite long, so I’ll save my next three tips for another day. If you want a few more ideas right now, check out Finding Courage in Crisis, an interesting article I ran across earlier this month. I’m always looking for new coping concepts to tuck away for times of need. So how do you cope with chronic, with crisis, or with crisis on top of chronic? I really would love to hear what you have to share!!!

Join Jennifer Saake, author of Hannah’s Hope: Seeking God’s Heart in the Midst of Infertility, Miscarriage and Adoption Loss for more on this topic, along with Lisa Copen as they talk (yes, in our real voices) during the National Invisible Chronic Illness Awareness Week Virtual Conference on September 15. Jen says, “Between the two of us, Lisa and I have survived 45 years of multiple chronic illnesses including Fibromyalgia, Chronic Fatigue Immune Dysfunction Syndrome (ME/CFS), Rheumatoid Arthritis (RA), Diabetes, Endometriosis, Polycystic Ovarian Syndrome (PCOS/PCOD), infertility, chemical sensitivities and more. We know that life doesn’t stop just because we are in pain. Hear our radio chat as we share our hearts and experiences through surgeries, infections, IV therapies, broken bones, unemployment, adoption journeys, and grief ranging from miscarriages to the deaths of grandparents. We will talk about survival skills for coping the stress of everyday life when crisis hits and we’ll look forward to chatting with you as you call in your own crisis on top of chronic stories too.”

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Be a Guest Blogger!

Are you interested in having a special blog post you’ve written about living with illness (especially an invisible one?) We’d love to consider it! Please submit it here and we will respond as soon as possible. If it’s accepted we will let you know the date it will appear. And yes, it’s okay if it’s been reprinted before. Just let us know when and where.

There are hundreds of thousands of blogs about living with illness and we’d like these posts to represent all invisible illness. So if you or someone in your family lives with anything from leukemia to sensory processing disorder, panic attacks to multiple sclerosis, depression to Myalgic Encephalomyelitis,  alopecia areata to diabetes… we want to hear from you! There is no illness that is too rare.

If your blog is selected, you will also receive an “I was a featured blogger for Invisible Illness Week” button to place on  your web site!

If you are looking for blogging topics visit our Bloggers Unite site where you can also sign up to commit to blogging on your own site for Invisible Illness Week and get the badge.

Please consider adding our logo or button or the badge (on the main page) to you site, Twittering about II Week, whatever you can do to help us spread the word. We want this to be an exciting time where people from all over the world with a variety of illnesses come together for support, encouragement and to create awareness about invisible illness.

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