I’m being hard to please. I admit it. I don’t know what I want, but I somehow desire other people to figure it out, when even I can’t.
The truth of the situation is that I have been off of my main medication for rheumatoid arthritis since August 2008. I’ve never been off of this classification of medication since I began it about eight years ago. I had to go off of it due to an infection last fall, and between my high risk for infection and need to have hand surgery I’ve not been able to take it (And I haven’t been able to have surgery due to edema, etc.)
The result is that every day gets worse. Literally. That’s not being pessimistic, it is just my reality right now. My rheumatologist has put me on a medication that people took for RA 60 years ago so I could feel like I was “doing something.” But it’s one of those medications that takes months to kick in, and it’s also raising my danger zone for my liver, so I don’t know how long I can keep taking it. Monthly lab tests will tell.
So I am on about 20 different medications from anti-inflammatories to pain killers, steroids to medications to try to help me sleep, control blood pressure, etc.
If that is the situation, what is my reaction?
Last week was a bad week physically–the worst it had been up until that point. I moaned about it a bit. I’m sick of it!
My Twitters and Facebook postings had people writing me back saying, “Praying for you.” “Hope you feel better soon.” I appreciated it. I explained to my husband one night I didn’t think he realized just how bad each day had been and he listened patiently with sympathy.
But this week he has had to work 15-hour-days every day on a project that is due. We are so blessed that he has a job (and hence, my health insurance) that I can’t and won’t complain for a moment about that. But has it been harder being on my own each day, all day and evening with just me and Josh? Sure. I’ve gotten Josh to bed an hour earlier each night by 8:15 or so and I’ve quickly followed, asleep by 9 p.m.
I haven’t even wanted to post “updates” this week, because I’m even sick of hearing myself whine. But my knees haven’t been able to unbend for days. I walk hunched over and hold onto walls, furniture and cars. I’ve tried to not give into it and still make it a fun week for Josh. We’ve made cookies, played Play Doh, watched a movie, gone to McDonald’s, karate, and hav had 3 play dates. Tonight is the Variety Show at his school and we’re attending. I’ve pushed through and have made it.
So why do I feel a sting when people write kind comments to me that say, “I see you’re posting on the list so you must be feeling all better! I’m so glad!” or “Are you feeling better this week?”
I want to say “No! I am NOT feeling better! I won’t feel better! Every week is going to get worse until I am healed up from a surgery that isn’t even scheduled yet.”
Yes, I am posting to some lists. I am trying to work to keep my mind off of things and then other times I am too exhausted to think straight and I just walk away from the computer. But I feel awful.
I feel badly I’ve not answered people who have kindly asked if I am better? I don’t want to say, “No, and I won’t, thanks, for awhile.” I don’t feel like being cheerful and saying, “I am hanging in there.” I don’t know how to be honest.
When my friend called and asked how I was I said, “Uh… I’m doing okay.” She said, “Just okay?” and I said, “Well, I know I’m sick of saying I’m not doing great and you’re probably sick of hearing it, so I don’t know… Lately I’ve been stealing my friend Pam Farrell’s saying… ‘I’m choosing joy!’”
Something as simple as “how are you?” shouldn’t caused such mixed emotions, right? After 15 years of chronic illness, I should be past it causing any emotions at all. But even as I write emails to people who I know are chronically ill I hesitate as to what to say. Do I say, “I hope you are feeling better”? Or do I say, “Unless you let me know otherwise, I’ll assume you are still having a lot of pain”?
We have a 50% chance of getting it right. When we are right, the person in pain gets a moment of “ahhh” –like getting into a hot tub. The sting of pain is taken away for just a few minutes. When we get it wrong, it’s a sting that is more like wading into the cold ocean waters.
What are your feelings? Experiences? While I am waiting I guess I will go update my Twitter. I’m still deciding to be honest (and boring) or “joyful” and upbeat.Read Full Post | Make a Comment ( 27 so far )
Tuesday, March 17th Oprah’s show will feature an interview with Montel Williams about living with chronic illness and they will be joined by the well-known physician Dr. Oz. This is not an endorsement of any kind for Oprah or her television show, but I am eager to see what this episode reveals regarding living with illness, and am glad to see an illness that is invisible being represented too. The preview also shows it will feature Scott Hamilton and Fran Drescher.
You can comment on the program now, or after it shows at her forum at Oprah.com (you must first register). If you feel comfortable doing so I encourage you to express what it’s like to live with a chronic illness. It’s no secret I would love for her to be aware of National Invisible Chronic Illness Awareness Week, and for her to see that nearly 1 in 2 live with illness—quietly–not just the celebrities that are willing to speak out.
Here is what I submitted to the forum. It is waiting approval (and I’m not sure it will make it through or not.)
Everyone copes with a chronic illness in the best way he or she knows how at the time. I have lived with rheumatoid arthritis since the age of 24 (16 years now) and like many people who are posting here, I just take one day at a time. Right now I have been in a new “season” of my disease, off Humera since Aug 2008 because I ended up with the flesh-eating bacteria in a wound. Extra prednisone and other meds are keeping me going–but just barely.
As founder of National Invisible Chronic Illness Awareness Week, I am eager to see what this show entails. As a long-time viewer of Oprah through the years, I applaud her efforts to finally talk about the emotional impact of invisible illnesses. (MS can be invisible for years and then can become “more visible” as the disease progresses, liike my RA and many other illnesses.)
Many of us may be frustrated if Montel shares experiences that are different than are own. I see posts that express that Montel is a bit whiny about his experience of “fighting for his life” while living with this disease.
But a couple points: One, he isn’t alone in his experience and will be encouraging many people who feel alone and isolated in their feelings of suicide. According to various studies, depression is 15-20% higher for the chronically ill than for the average person and physical illness or uncontrollable physical pain are major factors in up to 70% of suicides—over 50 % of the people being under 35.
Secondly, I think the honesty and vulnerability he expresses (as seen in the brief preview clip) are vital so that more people can be aware of “the face” of invisible illness. Let’s face it: when people like Montel Williams or Michael J. Fox (who is on the cover of Good Housekeeping this month) speak out, it gives illness a face — and a young one at that! Something those of us under 60 should appreciate.
It’s a nice reminder to healthy people that there are many of us who “look fine” but who are not, and who can legally park in the handicapped parking spot when necessary (even when we emotionally don’t want to!) Over 133 million people live with chronic illness, about 1 in 2 in the USA and about 96% of these diseases are invisible.
I have always liked Dr. Oz and am glad that we can hear from him on the topic of illness, perhaps even some of the emotions behind it. Rather than just sensationalize Montel’s experience, I think it’s vital that the audience hear from a well-respected physician on what you can do after the diagnosis when the illness begins to affect all areas of your life, as well as that of your family.
Thank you for taking the time to let people know about Invisible Illness Week. This year it will be September 14-20, 2009 and we are planning for it right now! We are eager to see how we can spread the word even more effectively this year and you make a huge difference!Read Full Post | Make a Comment ( 3 so far )
This article is free to be reprinted, but it must be left “as is” including the footer at the end. Thank you for sharing it!
You’re Too Young to Be That Sick!
By Lisa Copen
I was twenty-four years old, enthusiastically living in new city, finding my independence, careers, and following my heart when I became disabled in a period days and was eventually diagnosed with rheumatoid arthritis. It only took about four weeks, but with two visits to doctors a week, explaining my significant pain, it felt much longer. Eventually I found a wonderful doctor of internal medicine who asked me about fifty questions. In about two days I had a diagnosis.
As with many people, having specific terms like “chronic” and “forever” attached to a painful condition can simultaneously create emotions of fear and relief. At least something describes the chronic pain. There were not many friends, however, that understood or participated in my enthusiasm for a diagnosis. And the office managers at my place of work were not concerned about my pain level, but rather about when I would be able to get back into some heels to keep the office looking professional.
“Encouragement” was quickly tossed around, like “You’re too young to feel so badly!” Rheumatoid arthritis was only something that could be related to the aches and pains their grandparents suffered from and a hot water bottle made it go away. They’d laugh and say, “You can’t have arthritis yet!” Those who attempted to sympathize, compared my weary body to a sports injury they had. “I have a touch of arthritis on my knee cap from football in college. It’s not fun when the rain comes, but you just have to keep pushing and not think about it.” Even well-intentioned words were enhanced by the brush off of a hand or even rolling eyes.
A diagnosis in your twenties throws off all the typical decisions one is making. Your twenties should be about deciding on an education, a career, relationships, and where you will live. Suddenly, most of these choices are put on hold. Instead decisions are about how you accept (or do not) accept the diagnosis, what medications to take, what the risk of side effects are worth it, and how to locate the right doctor. We learn how to decipher lab results, what alternative treatments to try and when to have a good cry versus when to just bite your lip.
As I tried to make each decision based on careful research, instinct, and “worse case scenario” situation, hearing someone flippantly say, “You’re too young to have that illness” felt like a slap in the face. Though a simple comment, my heart felt it deep, as if they assumed I was too ignorant or accepting of the doctor’s diagnosis. They implied that I needed to be more assertive and get a the “real” diagnosis of an illness that could be cured in a few weeks with a pill. After all, I couldn’t really be that sick, because I “looked so good.”
Laurie Edwards, author of Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties says, “However infuriating and irrational such comments are, they only have the power to define or validate our conditions if we allow that to happen. There are all sorts of reasons why people find it easy to scorn or deny illness, especially in younger people who ‘should’ look and act healthy.”
The saturation of advertisements on television and in magazine for prescription medications has helped legitimize some illness, such as rheumatoid arthritis and fibromyalgia. There are downsides, however. For example, everyone considers her self an expert on the, plus they make their assumptions about how well the drugs work based on the ads. The advertisements show people with debilitating illnesses (healthy models, actually) who are astonishingly now able to water ski or join their kids on 300-foot water slides. While a certain percentage of people may experience remission, the majority of us are happy to be able to get up out of bed without assistance, get dressed, and drive to the grocery store. Ads and commercials fail to alert people that though an illness may be temporarily controlled, they are usually associated with immense daily chronic pain.
With any chronic illness, most of which are invisible illnesses, there will be people who will be skeptical about how much your life is impacted by your condition. When you cope with an illness while in your twenties or thirties, and you “look healthy” they will have even more hurdles to jump over to get the fact that for you to feel better requires more than an attitude adjustment or a daily walking regimen.
Get an instant download of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen when you subscribe to HopeNotes invisible illness ezine at Rest Ministries. Lisa is the coordinator of National Invisible Chronic Illness Awareness Week held annually in September.Read Full Post | Make a Comment ( 10 so far )
Are you enjoying Invisible Illness Week so far? We had over people at our workshops LIVE today so we are pretty enthused. You can also head on over and join our Invisible Illness Week “Hub” in the Sunroom, Rest Ministries Social Network, where you can blog, post discussions, mingle with others with illness, and even post photos or your favorite song.
Here is one thing to think about… what do you want to get out of the conference this year? First of all, go register so we have some idea of about how many people may be joining us for different seminars. It’s not mandatory… but you get a few goodies if you do.
One is this cute little card to print out and place on your desktop, that says, “My hope for this week is…” Think about what it is you are hoping for and place it on your desk. You can write notes on the back or on the downloadable stationary too. And the desktopper also has the URL where you log in to hear the conferences, so it’s always easy to find.
Secondly, what questions do you have for the guests? If you go to the speakers page, there are some guests who are taking questions in advance. You can just email them straight to them. If the guest you have questions for doesn’t have a link yet, that’s okay. Write them down so you have them handy. Each presenter will be taking questions at the end of the seminar, so you can send them to us then. Or… you can even call in like a talk radio show and ask them.
We may have more questions than we have time for, but we hope to have some of our speakers answer them in future posts here at this blog.
Christine Miserandino, founder of butyoudontlooksick.com (and the “spoon theory” gal as also fondly known…) joined me (Lisa Copen) to kick things off on Monday morning, September 8th, 2008.
This was a casual, fun time to chat with us gals who have lived with illness, are coping with the challenges of motherhood, who have used our illness to build very unexpected career paths, and who know what it’s like to be told, “but you look fine!”
Leslie Vernick gave us a wonderful presentation on dealin with hurt feelings and how to discern what relationships are healthy and what are toxic.
Maureen Pratt tried to join us at 3 p.m. but neither Lisa nor Maureen could get into the Blog Talk Radio line. Evidently the phone number was “so new” AT&T didn’t yet realize it was a real number yet. We’ll be rescheduling her soon, so watch here for details.
Jacqueline L. Jones gave a great presentation on alternative treatment options and how to pay for it if you find you want to use that option.
Thanks so much for a successful first day! Looking forward to tomorrow.
Click here to listen. All programs are archived!
LisaRead Full Post | Make a Comment ( 1 so far )
Please feel free to post this anywhere! Your blog, web site, forums, social networks, etc. It’s because of you the word is spreading and we want people to hear about it before the conference starts next week, not midway through the week. Thank you!
SEPT 2008—SAN DIEGO – SBWIRE– Traveling expenses, hard beds, peers wearing too much perfume, long treks to conference rooms, and exhausting days make up the typical conference–all which make it nearly impossible for the chronically ill to attend events where they can find encouragement and education. National Invisible Chronic Illness Awareness Week’s “virtual” conference online is more than just practical. It’s necessary.
“Having a virtual conference available to listen to is like a miracle to me! I no longer have to miss opportunities due to financial difficulties or inability to travel. I can’t wait!” says Kimberly Strange of Indiana who lives with neuropathic pain in legs following her back surgery.
National Invisible Chronic Illness Awareness Week, September 8-14, 2008 is featuring twenty live seminars, with some of the top chronic illness advocates online today at http://www.invisibleillness.com. Jenni Prokopy of chronicababe.com; Laurie Edwards of achronicdose.com; Rosalind Joffe of keepworkinggirlfriend.com; Christine Miserandino of butyoudontlooksick.com all come together to provide a wide variety of seminars. Seminars will be conducted via Blog Talk Radio, and the week is sponsored by Rest Ministries, the largest Christian organization that serves the chronically ill.
“This is a unique and exciting way for those of us who cannot travel to conferences of any kind, to ‘attend’ and become encouraged,” says Lynn Severance from Washington. “It will help dispel the isolation that exists as so many of us watch the “rest of the world’ have the opportunity to go and learn and fellowship with friends in a conference setting.”
Lisa Copen, 39, founder of Rest Ministries and initiator behind National Invisible Chronic Illness Awareness Week says, “Regardless of one’s spiritual beliefs there is an underlying need to be understood, to feel like those you love have some idea about what you are going through; how it can be difficult to look fine while you are feeling so poorly. We hope we can provide a place where people find others who understand, and gain new insight, as well as increase awareness publicly.”
One of the ways to meet the needs of the chronically ill is to provide the type of forum where they can learn, connect with others and interact with professionals. For the chronically ill, who typically have difficulty sleeping, extreme fatigue, trouble walking and sitting, and even chemical sensitivities, a virtual conference, where people can stay comfortable, attend free and avoid traveling is the perfect fit.
Four seminars per day, Monday through Friday, September 8-12, are available at http://www.invisibleillness.com and all will be recorded and archived. Hundreds of people are also blogging for awareness about invisible illness issues on September 8, 2008.
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Note from editor: This is a longer post than we usually have for a guest blogger, but the information in it is important for you to know, and also to know what organizations, such as the Advocacy for Patients with Chronic Illness (who is one of our sponsors!) do to assist individual cases as well as influence laws. I know the information isn’t the most cheerful to read, but it’s something we shouldn’t bury our head from either. Lisa
Advocacy for Patients with Chronic Illness, Inc. provides free information, advice, and advocacy services to patients with chronic illness in areas including health and disability insurance, Social Security disability, employment and school-based accommodations, family and medical leave, resource location, and debt management.
Health care is, for me, the most pressing civil rights issue of our day. People are having to choose between food and medicine because they can’t afford both. People are losing their jobs because they are hospitalized. Children – children with chronic illnesses are being segregated from other students, being forced to learn at home. If this isn’t a civil rights struggle – a battle for basic dignity and well-being – then I don’t know what is.
And so Advocacy for Patients is a civil rights organization, and I am engaged in a civil rights struggle on behalf of the chronically ill. Will you join me?
Why is my focus on chronic illness – particularly invisible chronic illness?
Chronic illness is different from other illness in that it can go into remission and relapse. For those of us who are chronically ill, we live remissions waiting for the other shoe to drop. But because our illness can go into remission, and because we have both good days and bad days, does that mean we are not “disabled” within the meaning of the law?
Disabilities law was fashioned to address the needs of people in wheelchairs, the blind, those affected by conditions that we can see. Most chronic Illness is different. How do you prove that you are “totally and permanently disabled” if you can work a few hours a day, or even a couple of days a week, but not more?
Trying to prove that a chronic illness is a disability for legal purposes is like trying to fit a square peg into a round hole. In order to prevail, to get our disability insurance claims paid, to get Social Security, to get the protections of the federal laws like the Americans with Disabilities Act and section 504 of the Rehabilitation Act, we have to prove that we fit a mold that was not crafted with us in mind.
That is the single greatest legal challenge facing the invisibly chronically ill in America today. How do we show that our illnesses “count” when they are permanent, but not necessarily permanently incapacitating? How many times have you heard “Well, you look good!”
When you read court decisions, you can’t help but be struck by how misunderstood chronic illness and the daily experience of the chronically ill are.
There is the judge who said that a patient with colitis had not presented evidence that she had “soiled herself,” but had, instead, vaguely stated only that she needs to be near a bathroom.
There is the judge who said a patient could not be found to be disabled because he did not have medical records for a certain period of time – while the reason he did not have medical records was that he was uninsured and could not afford to go to a doctor.
There’s the judge who said pain is not disabling because it can be eliminated if you just take enough pain medication (without considering the fact that pain medication would probably make the patient too sleepy to work).
It isn’t just courts that don’t understand chronic illness or the burdens that we face. I hear stories from patients every day that would make your hair stand on end.
There’s the patient WITH INSURANCE who has multiple sclerosis, Crohn’s disease, and gastroparesis who spent more than $48,000 in 2006 on medical costs not covered by her insurance.
There’s the CPA who was demoted to secretary after being out of work during a hospitalization. After one day in her new secretarial role, she was fired.
There’s the patient who had her colon surgically removed whose insurance will only cover a certain brand of medication that is released ONLY in the colon – the insurer won’t cover the different brand of the same medication that is released elsewhere in the digestive track.
You think you have insurance until you run into one of these sorts of problems. The sicker you are, the more of these roadblocks you encounter, so often the chronically ill are the only ones who are painfully aware of the limits of their insurance. We have coverage, but not real access to health care.
Nearly half of all uninsureds report having a chronic health condition.
1.2 million Americans with diabetes report that they are uninsured, and more than half of these report having an unmet need for health care or prescription drugs.
3.6 million Americans report having arthritis-related illnesses but have no health insurance, and again, more than half of these report having an unmet need for health care or prescription drugs.
More than 1.7 million Americans with heart disease are uninsured, as are 2 million adults with asthma.
And as one would expect, the statistics show that the chronically ill do not get the health care they need.
Nearly 38 percent of chronically ill adults indicate that they have skipped medical treatment or did not fill a prescription, as compared with 22 percent of healthy people.
According to a RAND study, only 20 to 25 percent of diabetics receive critical glucose monitoring tests
Two-thirds of patients with high blood pressure receive recommended care
Fewer than half of patients with heart disease receive proper medication
Fewer than half of schizophrenic patients receive appropriate medication.
Over 27 percent of the uninsured with chronic conditions report that they have not seen a doctor in 12 months.
Thirty-eight percent of the chronically ill uninsured lack a usual source of care, and those who do rely less on private doctors (as opposed to clinics) than the insured.
Almost half of the uninsured chronically ill forego needed medical care or prescription drugs.
Despite foregoing care, the uninsured chronically ill face an average of $2,000 in out-of-pocket expenses for health care in a 12-month period.
In 2003, of the 3 million uninsured chronically ill, 42 percent went without needed care, 65 percent delayed care, and 71 percent failed to get needed prescription drugs, all because of cost concerns.
And that’s just the status of the chronically ill as pertains to health insurance. The chronically ill’s health status is affected by other systemic shortcomings. We face the same hurdles in Social Security, the workplace, schools – invisible chronic illness infects every inch of our lives.
I talk to chronically ill patients who are ASHAMED because they have never before been unable to work, never before been unable to pay a bill. They hold up in their houses and we don’t hear from them because they are ASHAMED.
How dare we allow this to happen? How can we live with ourselves if we do nothing in the face of such suffering?
I can’t. And I hope you can’t, either.
What has happened as we have begun our national discussion of the health care crisis in America is that, slowly but surely, people have started telling their stories. If all of us talked about what we have to bear every day – how hard it is to be sick in America – maybe more people would understand why our system is failing and why we feel such urgency about finding a solution.
Which brings me back to my own little civil rights movement. You have to tell your story. Speak or you will not be heard, and if you are not heard, things will continue to worsen for the chronically ill.
We chronically ill have to make a little noise.
Fully half of all adults in the United States have a chronic illness. We have the power to change things if we speak with one voice. We can make it okay to talk about being sick. We can elect people who will fix the health care mess we are in. We can inspire each other to be engines of change.
We have the power. Now, we have to use it.
Jennifer C. Jaff, Esq. is Founder and Executive Director of Advocacy for Patients with Chronic Illness. She also has Crohn’s disease. A 1984 graduate of Georgetown University Law Center, when her disease disabled her and she turned her skills towards the internet and found a community of chronically ill patients in desperate need of legal advice and help. She started Advocacy for Patients then, when she was too ill to leave her home. Now, she serves patients full-time. She is the author of Know Your Rights: A Handbook for Patients with Chronic Illness, and Friday Tired: A Feminist Rant on Healthcare in America in the 21st Century, and she is the Chronic Illness Advocate on RevolutionHealth.com.Read Full Post | Make a Comment ( 6 so far )
I used to be told “We’ll call you if something isn’t right with your blood work.” Then one day, several months after labs and well into feeling like the living dead, I got an urgent call from my doctor. It was bad news.
I was good. Like the excellent dishrag patient that I was, I waited. I assumed.
I was wrong.
It was a mistake. A mislaid paper on a busy desk. Just another lab.
Because of the long delay, I was very, very sick and it took a long time to get better.
Now, I always call for verbal results and paper copies of my labs or tests to be faxed to me. It’s a rule in our house and all my doctors know I insist on this kind of ‘open relationship’ with them. I keep a notebook of labs and test results so I can cross check between my doctors and provide them with missing paperwork if needed. I know what tests were requested and have a say in them. I know the results and the ‘norms’ for the tests because I’ve talked about it with my doctor and looked it up for good measure. I never, ever take anyone’s word- “everything’s fine.”
I am a difficult patient by most anyone’s standards because I am high maintenance and time-consuming. Most people with chronic illnesses are.
Why do I do this?
Doctors are people too. Labs are imperfect because they are run by people who don’t always read up on the current acceptable statistical ‘norms’. Nurses are busy, busy people, and sometimes… well sometimes things just ‘happen’.
Checks and balances. It’s their job to order the agreed upon test, the lab’s to do it right, and mine to be sure all the I’s are dotted and T’s are crossed. Check, double check, triple check. It’s easy to be forgotten or laid to the side when you suffer an invisible illness.
Do you know what labs or tests you had run and why? Do you know what the current acceptable normals are for those tests? Do you wait for your doctor to call you with lab results?
Diana from SomebodyHealMe asked this last question recently, and I couldn’t get it out of my mind. Here is her blog post which includes some multi-media which I’ve not yet even had time to listen to. I hope you enjoy it!
Thanks Diana for a thought provoking errr invading post.
Invisible Illness Day- September 8, 2008. National Invisible Illness Week is worth blogging about!
Ellen Schnakenberg is living with purpose, facing the ups and downs of misunderstood chronic illnesses of genetic origin, and knows a little about struggling… and guilt.
“I have a choice in everything that happens in my life. I will not be a victim. I can choose to be defined by the pain and disability of my illnesses, or choose to go beyond simply surviving and make my experience mean something. I watched my small children one night, quietly sleeping in their beds, and knew what my choice had to be.”
Long ago, Ellen and her husband moved to a farm in Missouri to concentrate on family and follow a dream. She is a writer for WEGO Health http://community.wegohealth.com/ where you can find her blog.
Ellen shares her life with her husband and 2 college-aged children, her beautiful Arabian show horses, and a menagerie of dogs and cats. Her her trusty guard dog ‘Beast’ ever at her side.
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Chronic illness statistics are staggering, with nearly 1 in 2 people in the USA living with a chronic condition and, according to U.S. Census Bureau, about 96% of illnesses are invisible. With hundreds of thousands of people on the Internet searching for health information and support, thousands of bloggers now post daily journals about the emotional challenges they live with while facing a daily chronic illness filled with pain.
National Invisible Chronic Illness Awareness Week, September 8-14, 2008, is inviting these blogs to have a substantial role in their awareness campaign. For example, part of their outreach includes over thirty days of guest bloggers as well as bloggers across the internet posting about invisible illness matters. For example, if you have an invisible illness-and a legal handicapped parking placard-you’ve likely faced a few stares and questions if you park in the blue spot since your invisible illness does not require the use of a wheelchair.
All over the internet, bloggers are putting their illness awareness efforts together to join in helping more people become aware of invisible illnesses. They show their support by posting about invisible illness issues, on their own blog. A downloadable badge that says, “I’m blogging for Invisible Illness Awareness Week” can spread the word about their commitment to the cause. Plus, bloggers are also thanked publicly each Friday on the Invisible Illness Week blog, which can give them lots of extra exposure for their own web site. Bloggers can post anytime, but they are also encouraged to specifically post on September 8th to kick off the week.
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 join this unique opportunity to blog for awareness about invisible illnesses, see www.invisibleillness.wordpress.com . You can also receive updates, participate in surveys, win prizes, and find out more about the telephone workshops at the Invisible Illness Week web site: www.invisibleillness.com .Read Full Post | Make a Comment ( 1 so far )
Here is a template of an email for your pastor that you can cut and paste and personalize about why you think II Week is important and how the church should get involved.Read Full Post | Make a Comment ( None so far )
Guest Blogger, Dianne Pruim, is blessed with two sons and two grandsons. She continues to surrender all (sometimes kicking and screaming), including painful idiopathic neuropathy, to God. We think you will be able to relae to her blog about trying to explain invisible illness to even those in the medical profession.
I was with yet another health care professional today… This one was removing an interesting contraption from my legs and feet that was supposed to decrease pain and maybe even restore some feeling. Earlier we had discussed my insurance coverage (or lack thereof) and their willingness to be very generous with me in the use of their facility, etc. It was then that I mentioned that I was on disability [financial assistance].
So as she removed the wires and such she said, “So why can’t you work?” I should know better than to try and answer a question like that. I tried to explain that I have to take a lot of pain medications that cause extreme drowsiness and impair my thought process and memory, but of course it doesn’t come out like that.
The truth is…I have an invisible disability. And if it weren’t for the cane I sometimes use for balance, most people wouldn’t know there was anything wrong with me. They don’t realize that I make very planned appearances–not too many during a week, because I need a significant amount of time to recover. Yesterday I had friends over for Sunday dinner and today I spent the rest of the day (after my therapy) in bed.
I don’t like for people to see me “down” so I “bite the bullet” or “suck it up.” I guess the problem with that is that it makes the disability more invisible. The thing is, I liked my job. My own business, built from scratch, my boys working with me. We had just painted my office and put in new carpet. I never got to add the logo to the wall.
Why can’t I work? I tried to keep up for several years as my condition got worse. The business suffered and so did I. But I still don’t really know how to answer that question. Please don’t judge me by the way I look on the outside because I try so hard to appear normal and healthy when I am with people. Just try to understand.
Diane shares: “I think National Invisible Chronic Illness Awareness Week is important to participate in because education and awareness are the best steps toward understanding, acceptance and hopefully bearing each other’s burdens.”
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