Can You Still Be Friends If They Think You Are Faking Your Illness?
September 9, 2010 by admin
Filed under Articles, Today's News, Announcements
If you have an invisible chronic illness you may discover that the invisibility factor of the illness can be much more of a challenge than the physical changes your body is undergoing. Most people who are diagnosed with an illness sooner or later accept the illness as being a part of life. In order to have a life filled with joy, one must educate one’s self on the illness and that treatment options available, and then make choices.
But we have no control over our loved ones when they choose not to accept our illness, or sometimes even acknowledge it. Their skepticism can last a lifetime and damage our self-worth and many relationships.
So, what you do when someone important in your life refuses to acknowledge the seriousness of your disease, or accept that the disease even exists? Here are four steps to change your actions and attitudes:
1. Go with it. Though the seriousness of your illness is significant under your roof, it isn’t that important to others. And there’s no magical conversation you can have with the person that will make him change his mind. The most likely way your friend will accept that your illness is real, is by observing you. For example, your invisible illness may begin to have some visible side effects. When he sees you struggle to get up out of a chair, don’t comment; just let him take it all in.
2. Grow with it. This situation can be a perfect time to reflect on your own perceptions of people. Have you ever stood in line at the bank and thought yourself, “No one here understands how difficult it is to just stand in this slow line!” But nearly 1 in two people in the USA have a chronic illness, so the chances are high that someone standing beside you does understand. Remember that 96% of illnesses are invisible, so watch your assumptions. What situations are your friends going through that you don’t fully grasp? The affair of a spouse, a baby born with a disability, and the loss of a job, are all experiences that can alter one’s life in an instant. Chances are that your friends can use your support and even empathy.
3. Get over it. It is easy to obsess over the fact that no one understands what your daily chronic pain is like. Save yourself a lot of grief and don’t do it. We would all like a loved one to be able to slip inside are skin for twenty-four hours, but this level of understanding of our disease will never occur. If you began to resent people who don’t understand, soon all your friendships will be tainted. Do not take a friend’s lack of empathy personally, even though it feels personal. You cannot change someone’s mind; you can only control your own behavior, so make certain you have conversations that you won’t regret.
4. Get on with it. Life is precious and short and no material things in your life can replace friends and family. It is true that the intimacy level in your relationship will not ever be high if your illness is not at least believed to exist. But if you still want a relationship, and it’s a healthy one in other ways, it can happen.
The odds are, at some point in your friend’s life, a health issue will occur and suddenly he will have a glimpse into what your life is like. Allow him to feel comfortable coming to you for support and encouragement and don’t use the opportunity to say, “I told you so.”
Go with it. Grow with it. Get over it. Get on with it.
Is it possible to have relationships with people who don’t understand the seriousness of your illness? Yes. Accept him for what he is able to give, and know when to back off if the relationship becomes destructive to your emotional state. Have reasonable expectations. In time, this may end up being one of your closest friendships.
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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Should I Feel Guilty When I Have a Good Day?
September 8, 2010 by admin
Filed under Guest Blogger Posts
By Tiffany Christensen
Is joy salt in the wound or hope for tomorrow?
Before writing this, I wanted to look up the definition for the term “mindfulness.” It is language I am using more often and the basis for this blog entry. However, it took me seconds (via google and wikipedia) to learn the term has many meanings and I could not find a definition for how I use it personally. Hmmm. Did I make it up and all this time I have been misusing this term?
Either way, mindfulness as I defined it somewhere, somehow, along the way is being aware of oneself (internal and external awareness) while also being aware of how one’s actions, speech and thoughts might effect others. For me, this primarily means the people I care about because I feel far to overwhelmed when I consider being mindful of everyone on planet earth!
So, with this approach in mind, I find myself with a question for my blogging friends.
There are so many people in my life who are suffering. Many of them are friends I don’t know IRL (in real life) but their struggles permeate my thoughts often despite the lack of physical presence. In addition, people in my RL are struggling in a variety of ways. Primarily I am referring to physical struggle, serious illness etc, but at times this can mean emotional struggling also.
More and more, I find myself feeling a compulsion to hide or downplay the sweet parts of my life. It is not that I don’t have struggles, I do, but they pale in comparison to the people I know living day to day for another breath.
This compulsion comes from a place of “mindfulness” as I define it. It seems hurtful to me to sing the praises of my life when I know others are suffering so. I feel as though I should keep any of my good fortune to myself out of respect to those who are sad, scared and hurting.
I suppose I have some silly notion that when everyone is “all better” and the suffering is gone, I will again shout from the rooftops my love of this life. But, of course, the suffering will never end. One person will recover and another will suffer. This is life. One day the suffering will be mine again.
So, am I ridiculous? Can you relate? Am I on to something or out of my mind?
When you are suffering, do you like to hear of the joy in other’s lives or is it like adding insult to injury?
Should I follow this instinct I have and practice my made up version of mindfulness or should I share my happiness even with those who currently suffer?
What do you think?
After spending over 30 years in and out of hospitals, Tiffany Christensen realized that she had a lot of practice at being a patient! After getting her first lung transplant for cystic fibrosis, she found herself waking up in ICU with another set of donor lungs only 4 years later. She is the author of “Sick Girls Speaks” and “We are the Change: Transforming the Healthcare Experience through Partnership”, a speaker and a patient blogger at Sick Girl Speaks.
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“What do you do?” Explaining About Your Invisible Illness and Career or Lack of It (Or Do You Need to?)
September 7, 2010 by admin
Filed under Guest Blogger Posts
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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Up – Visit Some Fabulous Invisible Illness Week Blogs
September 6, 2010 by admin
Filed under Online Ways to Help, What to Do - How to Help
Many of you have been a large part of spreading the word about National Invisible Chronic Illness Awareness Week by blogging about it for us! Thank you!
And we hope that you have gained some encouragement and inspiration in reflecting on living with invisible illness as well as reading the blogs of others.
- So far this morning you can read over xx blog posts with people who
have registered through Bloggers Unite. To read them click here at Bloggers Unite for Invisible Illness Week and then scroll down. Ont he right hand side it will say “Participating Blogs.” About 171 bloggers are registered from 2009 and they still have wonderful posts to read. - Bunches of people have participated in our Meme, “30 Things About My Invisible Illness You May Not Know” here.
- If you read a post, be sure to leave a comment, even if just a short one. All of our bloggers love to hear from you and know that you stopped by!
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Creating Pain Awareness Through Photography
We received this information from the CT Pain Foundation and thought you may be interested!
Nearly seventy-five million Americans deal with pain. Chronic pain is an all-encompassing problem that knows no boundaries. It affects the poor and the rich, the young and the old, male and female. No race, class or age is spared from its debilitating hold.
In a sense, pain is the invisible disease. Pain is intangible, subjective and personal. Each person has a different level of tolerance and a personal way of defining pain’s intensity. As a result, many people with pain face judgment and ridicule. Pain leaves people feeling unheard, misunderstood and alone. It often goes untreated and underfunded.
CT Pain Foundation, a nonprofit, is dedicated to creating chronic pain awareness, empowering survivors and generating change. The INvisible Project is aimed at accomplishing all three.
September 30, 2010 in New York City
October 21, 2010 in Connecticut
The INvisible Project is a photojournalistic showcase of the day-to-day experiences of real people with chronic pain. To reflect the widespread effects of pain, a variety of conditions are represented, including cancer, complex regional pain syndrome (CRPS), Ehlers-Danlos syndrome, juvenile arthritis, multiple sclerosis, and fibromyalgia.
The goal is to make visible the experiences and strength that are often hidden behind the walls of hospitals and bedrooms. The INvisible Project will contrast the fragility of our physical bodies with the immense fortitude of spirit essential to living each and every day.
To raise awareness and funds, the photos and stories of the ten INvisible Project participants will be on display at the Times Square Intercontinental in New York City on September 30, 2010. As September is National Pain Awareness month, the INvisible Project is determined to spread awareness, create advocacy and ___ patient rights. The second event is scheduled October 21, 2010 at the Westport Play House in Westport, Connecticut.
One hundred percent of the proceeds will directly help those living with pain. To expand its programs and support groups, seventy percent of the raised proceeds will go to CT Pain Foundation. The remaining thirty percent will fund chronic pain research.
It is the mission of the INvisible Project to validate the suffering while highlighting the strength and courage of chronic pain survivors.
About CT Pain Foundation:
CT Pain Foundation is a 501(c)3, non-profit organization serving persons with pain, their families and care providers. Founded in 2006, CT Pain Foundation promotes healthy support groups and other positive, hands-on programs for those living with pain.
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What Illness/Health Related Newsletters Do You Get?
September 3, 2010 by admin
Filed under Free Ways to Help, Online Ways to Help, What to Do - How to Help
Between all of us with a variety of chronic illnesses and symptoms, there are hundreds of thousands of newsletters and ezines out there on the internet. Since many of us live with different illnesses than our friends, we actually have quite a few editors we can reach in a short time.
I am letting the editors of the newsletters I receive know about Invisible Illness Awareness Week.
I am just going through the newsletter ezines I’ve received in the last few weeks and have hit “reply” or “contact” and sent them an email sort of like this (be sure to personalize yours and keep it short)
Keep in mind that the easier you can make it for them to tell others the more likely they will! So be sure to include the paragraph that has the description they can copy and paste.
Dear (name):
I recently received your newsletter and enjoyed it as always, especially the part about (what I liked here).
I wanted to call your attention to the date of September 13-19, 2010 which is National Invisible Chronic Illness Awareness Week.
September 13-19, 2010 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including a virtual conference September 13-17 online for free with speakers each morning 10:30 – 12 USA Pacific time.
There is a Meme “30 Things You May Not Know About My Invisible Illness”, you can sign up to blog for the cause, read guest bloggers’ posts, and get involved in the campaign on Facebook. There is even a free 80-page ebook when you sign up for email updates, with 263 tips!
With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses. You can find more information at http://InvisibleIllnessWeek.com
Thank you so much for passing this along!
(Your name)
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You are Too Young to Be That Sick! Chronic Illness & Young Adults
At the age of twenty-four, a thousand miles away from my family, living in a new city, I was diagnosed with rheumatoid arthritis. Over a period of four weeks and about eight doctor’s visits, I finally found a physician who listened to me explain my symptoms and in less than two days I had a diagnosis.
Despite the terms “chronic” and “forever” I felt relieved to know the label that described my chronic pain. Few of my friends, however, shared my enthusiasm for a diagnosis. The managers at my office were more concerned about the fact that I wasn’t wearing heels to work anymore, making me look less 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.
When you are faced with a chronic illness in your twenties, all of the typical decisions you should be making are quickly put on hold. Up until now, you were considering what kind of education to pursue, your career aspirations, relationships, and even where you will live. All these are put aside, however, as you are forced to make immediate decisions that impact the rest of your life.
Things like how well you accept (or do not) accept the diagnosis of your condition, which medications to try, when side effects are worth the risk and when they are not, and how to find the right physician. While friends are deciding which party to go to we’re at home trying to make sense out of our latest lab test results, weighing our options for alternative treatments, and deciding to have a good cry or just go to bed and hold back the tears one more night.
I tried to make each decision based on thorough research, a bit of instinct, and “worse case scenario” situations. So when I heard someone facetiously say, “You’re too young to have that illness” it felt like a slap in the face; as if they assumed I was too gullible to fight the doctor’s diagnosis and get “right one” that could be cured with a simple pill. I had to be incorrectly diagnosed, they assumed, because, after all, 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 ambush of advertising for prescription medicines has given the general public a small education on the fact that illnesses like rheumatoid arthritis and fibromyalgia are legitimate diseases. However, with this education, comes the feeling that everyone is an expert and their assumptions about various diseases are now based on what one sees in those same commercials. For example, people with disabling illnesses can somehow be miraculously playing tennis or doing a marathon. While it’s true that a very small percentage of people may go into remission, or those just diagnosed may have favorable results, most of us are happy if we can get out of bed, get dressed and drive a car. These commercials neglect to inform people that though an illness can be controlled somewhat, the person may still be in significant daily pain.
With each chronic illness, most of which are invisible, people will doubt that your illnesses impacts your life as significantly as it does. If you are in your twenties or thirties, they will be even less likely to understand that feeling better requires much more than a good attitude or a little bit of exercise.
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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Let Your Church Know About Invisible Illness Awareness Week
September 3, 2010 by admin
Filed under Free Ways to Help, What to Do - How to Help
Nearly 1 in 2 people in the US have a chronic condition. . . This includes people sitting in pews too! Invisible Illness Week is sponsored by Rest Ministries which is the largest Christian organization that specifically serves the chronically ill.
About 300 HopeKeepers groups exists around the USA and beyond too (find a HopeKeepers group near you or start a HopeKeepers group yourself!)
Pastors actually receive very little education in seminary that specifically discusses how to reach out to the chronically ill. They may learn to counsel a bit, pray, and pray for healing, but 6 weeks later-when the person has not been healed– it can be confusing as to what to say and do then.
Now is a great time to introduce Rest Ministries to your pastoral staff. There are some simple ways to increase awareness, by just emailing your pastor about the event. (A description is below that can be edited.)
If you need something to include on a resource table Beyond Casseroles bookmarks and Rest Ministries brochures are perfect give-aways. If your church will approve it, you may wish to get up and share a bit about chronic illness, Rest Ministries, or your testimony.
We are here to answer any questions! And if your pastor does not seem enthused. . . that’s okay. Don’t take it personally. If you are considering starting a HopeKeepers group or some kind of chronic illness ministry, “How to Start a Chronic Illness Pain Ministry” a new book by our founder, Lisa Copen, has some great tips regarding the emotions of it all, as well as the practical tips.
We recommend sending off a short email to your pastor and let him know that you will follow up with a phone call in a couple days. And then call him! If the pastor is very busy or oversees a huge church, you may wish to choose a pastoral staff member that oversees those who are ill, caregivers, the women’s ministry director, etc. Connect with the person who you believe will most connect with your passion of chronic illness ministry.
September 13-19, 2010 is National Invisible Chronic Illness Awareness Week. This annual event began in 2002 by Lisa Copen, founder of Rest Ministries, a national Christian organization that serves the chronically ill and an affiliate of Joni and Friends, the ministry of Joni Eareckson Tada. The week has a variety of ways to get involved including a virtual conference September 13-17 online for free with speakers each morning 10:30 – 12 USA Pacific time.
There is a Meme “30 Things You May Not Know About My Invisible Illness”, you can sign up to blog for the cause, read guest bloggers’ posts, and get involved in the campaign on Facebook. There is even a free 80-page ebook when you sign up for email updates, with 263 tips!
With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses. See InvisibleIllnessWeek.com .
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Just Imagine. . . Trying to Explain Daily Life to a Healthy Person
September 2, 2010 by admin
Filed under Guest Blogger Posts
Can you imagine never being able to eat again? Hooking up to IV nutrition or tube feedings every day in order to live? Carrying your nutrition on your back all day or being attached to a pole all night? Or, simply having to “survive” on chicken broth, Ensure, and small bites of food all day long? And in spite of that, still dealing with malnutrition, dehydration, weight loss, abdominal pain, nausea, and vomiting on a daily basis?
Frequent trips to the ER and hospital become routine… just a part of life. Social activities are non-existent because most of them involve food. If you do go out, you end up ordering water, maybe a soda, and pulling that pack of crackers out of your purse to nibble at. You feel fortunate that you are even capable of keeping that down, realizing that many people in similar situations can’t. Making plans is a challenge. You may feel well and up for an outing, but then while out the symptoms attack and a planned fun-filled evening becomes a drag very quickly. That’s what life with gastroparesis and intestinal pseudo-obstruction is like.
These conditions are so poorly understood. They are so hidden that people often don’t believe they are real or are not as serious as they actually are. Although difficult to understand, patients suffering from GP and CIP may look completely healthy. They may drive, work, shop, go to church, take care of a family, and look great on the outside. Their color may be nice, they may look strong and energetic, and they may appear to be feeling well. Yet, the turmoil churning within them is by no means normal.
Remember the last time you had the flu. After 24 hours of nausea, vomiting, perhaps diarrhea, and aches and pains, you couldn’t wait to get back to work and your normal activities. As you tried to return to your routine activities, however, you did notice you felt weaker than usual. It was more challenging to get things done because you had a day of surviving on toast, crackers, and soup…not exactly a champions dinner!
Now, take that day and multiply it by years. Add medication, medical procedures, hospitalizations, chronic malnutrition complications, invasive treatments, surgeries, and additional illnesses that develop over time. You are getting closer to understanding what life with GP and CIP is like, but you are still not there.
On top of the physical issues, because the conditions are so poorly understood, people with GP and CIP often have to live with the challenges of stereotyping by society. It is often believed that patients are exaggerating their conditions because they don’t “look sick.” Others believe those who suffer really just have an eating disorder and use a “mild” condition as an excuse for not eating well. People simply don’t understand that a couple sips of soup can send one’s gut into a frenzy and result in hours of nausea, abdominal pain, and vomiting.
Sometimes this lasts even for days. One wrong bite of food can result in a bowel obstruction and trip to the hospital for an NG tube for suction or surgery to remove the blockage. There are no cold and flu treatments to help symptoms or treat the conditions at all. At best, patients can try some anti-nausea medications with nasty side effects, or drugs that are so expensive insurance companies only provide 12 a month…so they have to decide which 12 times a month they are sick enough to take it. On top of that, any drugs that may help are pulled from the market and no longer available.
Once that is removed, even if restarted through compassionate clearance programs, they never quite work as well again. But the odds of getting on that program are slim to none. They feel like everything has been taken away from them…not only health, a normal life, food, and even friends and family who jump ship, but the only treatment that keeps them even somewhat functioning.
Think back again to the day you had the flu. You probably did not want to lift your head off the bed or couch. You felt too weak to make it to the bathroom. Every time you sat up, you felt your head spin and the nausea increased even more. Finally, it was a battle of determination to force yourself up and walk to distance to the bathroom. While you were up, you tried to grab as many items as you needed so you didn’t have to get back up again for a long time. By the time you get back to bed, you were so weak and wiped out that all you wanted to do is sleep or watch TV.
But you couldn’t get your mind off the nausea. It was so overwhelming that you curled up into a ball on your side and just waited for it to pass. You took flu medication in hopes of sleeping it off and had hope that tomorrow would be better.
People with GP and CIP don’t have that hope that tomorrow will be better right now. Each day varies and some are better than others, but inevitably the bad days will always come back. There are limited options to treat symptoms, but they don’t work well. Patients are basically told to “live with it.” In some cases, it can’t be lived with. While most people with GP get by on what is available, because there are no other options, quality of life is certainly very poor. Many survive on less than 1,000 calories a day, severe weight loss, disability, tube feedings, IV nutrition, medication with nasty side effects, and a life full of invasive medical treatments and hospitalizations.
GP and CIP are not just simple illnesses which can be cured through diet changes, medication, or surgery. They do not mildly impact life. They have a profound influence on every daily activities, regardless of severity. There is no escape. Is this the kind of life a person wants to “just live with?”
There are also many situations in which living with GP and CIP are no longer an option. In severe cases, chronic malnutrition takes over and people are unable to survive the trauma on the body. The body often quits absorbing, organs shut down, and the liver may fail for those who have been on long term IV nutrition. Veins become inaccessible and there is no way for them to receive nutrition. Some who are fortunate enough to be aware of the option and be eligible may pursue a five organ transplant as a last resort to stay alive.
While this can be miraculous and life saving, it doesn’t come without its own complications for life. Individuals who reach this level of severity have become desperate. There are no options. They either risk their lives by going through a transplant, recognizing that even if they make it to the transplant and out of the OR, they face a lifetime of complications and possible organ rejection. But the only other option is starvation. There’s not really a choice when you get to that point.
Living with GP and CIP is hard to describe. The best patients can do to help others understand is to tell people to consider what it would feel like to have the flu, every single day, and the impact that would have on your life. But then you have to throw in additional health problems and the stereotypes, comments, and claims by others that what they deal with is not real and not worthy of attention. Because they don’t “look” sick, family and friends who don’t believe put a wedge between them or completely leave, believing that the person is trying to use a mild condition to “benefit” from resources such as disability, have an excuse to get out of unwanted duties, a way to receive special parking “privileges,” and other accommodations at work and school.
They are often looked at oddly when forced to admit they are on disability because of a “stomach” problem, can’t lift a box of sodas into their cars because they are too weak, get glared at because they park in an HP spot but get out of the car walking, and dealing with other colleagues and students who are jealous of the accommodations received to make life easier to live and adaptation into society easier.
GP and CIP need more attention. People don’t understand what it is really like to fight these conditions and what daily life is like for those who suffer. They are downplayed as simply being conditions that can be controlled if “you would just eat correctly and avoid certain foods.” While in some instances this is true, there is a very wide spectrum to the level that people die from these conditions as well. If not to the point of dying physically, many are unable to truly “live” at all as GP and CIP zaps the life out of them.
Note how long it took you to recover from just a 24 hour flu. Then realize that in GP and CIP there is no recovery. There is no in between. It is a daily battle, with ups and downs, unknowns, and a life full of complexity and misunderstanding. Try to step into their shoes for a short time. Next time you have your head in the toilet, imagine life like that every day.
Be thankful for what you have. Be thankful you will recover and life will return to normal. And remember those whose lives will never return to normal. Give back. Help them fight. Support them. Try to understand. Let them vent without judging them. Encourage them. They often lack self-confidence because they have either been judged so much or feel as if they are incapable of accomplishing important things because of being ill. Also, realize that you are dealing with some of the strongest, toughest, people you will ever meet. Thank you for taking the time to read this and step into the lives of those suffering from GP and CIP for a short time.
http://bluelightningjeep.blogspot.com/2010/02/just-imagine.html
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Let Your Local Illness Organization Know
September 2, 2010 by admin
Filed under Free Ways to Help, What to Do - How to Help
Do you have a local association or organization that you know about or attend a support group meeting? For example, the Arthritis Foundation or the Multiple Sclerosis Society are wonderful organizations.
There are literally thousands of them that serve even the rarest diseases. If you can take just a few minutes today or tomorrow and pick up the phone and call a few of them (even just one!) it would help us spread the word.
Wondering what to say? Here is a sample script:
Hi, my name is _____. Is there someone there I could speak with about events or programs?
Hi, my name is _____. I have (name of illness) and I just wanted to let the staff of your organization know about something I am involved with, It’s called Invisible Illness Awareness Week. It’s a national event to increase awareness that about 1 in 2 people in the U.S. live with a chronic illness and about 96% of the conditions are invisible.
[Oh, when is this?]
It is September 13-19, so very soon, but I wanted to make sure that you knew about it. It’s been around since 2002 and during the entire week there is an online virtual conference.
[That sounds interesting. And how you involved?]
Actually, I am just helping out the volunteers in spreading the word. The virtual conference is free and there are other things they are doing as well, such as having hundreds of bloggers blog about invisible illness, that kind of thing.
[I see. And how can I get more information?]
Everything is at the web site invisibleillnessweek.com – There are press releases, a video about the week, media information, etc. If you have any kind of emailed newsletter or place for events to list it, we just want to make sure people know about the free conference.
There are some short blurbs on the web site that can be copy and pasted directly into your email newsletter if you’d like to keep it simple too.
Thank you so much for your time. I know you are very busy and I appreciate that fact that you care.
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