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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Who is Blogging About Invisible Illness Week? Here are Some Sites We Found!
September 4, 2010 by admin
Filed under Online Ways to Help
Who is blogging about Invisible Illness issues and our special week? Here are a few sites we’ve found!
Invisible Illness Week 2010
By James
Invisible Illness Week is almost here again! Scheduled for the 13th-19th of September 2010, this is the 9th year – and it’s less than a month away! This year, there will still be online seminars, though not as many as in past years. … Headache and Migraine News – http://headacheandmigrainenews.com/
SocialWrkr24/7 : Eyes Opened Wider: Invisible Illness Awarness Week
By SocialWrkr24/7
I don’t think I talk a lot about my “invisible illness” here on the blog – but I know I’ve mentioned it a handful of times. It is easy sometimes for me to brush it aside because I like to consider myself in “remission”. … SocialWrkr24/7 : Eyes Opened Wider – http://eyesopenedwider.blogspot.com/
Watching The Waters: National Invisible Chronic Illness Awareness …
By Corey
National Invisible Chronic Illness Awareness Week: Migraine. September 13-19 is National Invisible Chronic Illness Awareness Week. I learned about this on another blog, and will be participating several times in the coming weeks. … Watching The Waters – http://www.watchingthewaters.com/
Oh My Aches and Pains!: Good Reads for the Weekend: Lots of Linky …
By SelenaIt’s that time of year again, time to celebrate National Invisible Chronic Illness Awareness Week. This will be my second year participating in this virtual event which is happening September 13 through the 19th. … Oh My Aches and Pains! – http://www.ohmyachesandpains.info/
Sheryl Aronson: Invisible Illness Week
By noreply@blogger.com (Sheryl Aronson)
September 13-19 2010 has been designated ‘National Invisible Chronic Illness Awareness Week’. They have a simple and fun way of getting the word out about this awareness week, and make people feel good at the same time. … Sheryl Aronson – http://sherylaronson.blogspot.com/
CHRONICLYsILLy: Laws of A Lupie- CHRONICLYsILLy Rules to Live by
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Fact #1: Lupus is an autoimmune disease and is commonly referred to as an “Invisible Illness.” An invisible illness means that you cannot necessarily tell that the person is sick simply by looking at them, thus their illness seems to be … CHRONICLYsILLy – http://chroniclysilly.blogspot.com/
Journey with Chronic Illness BLOG » Invisible Illness Week Team …
By journeywithchronicillness
“Chronic Illness Tips: 263 Ways To Do More Than Just Get By” is by Invisible Illness Week founder, Lisa Copen and friends. Friends include chronic illness career specialist Rosalind Joffe, relationship expert and best-selling author Pam … Journey with Chronic Illness BLOG – http://journeywithchronicillness.podbean.com/
Invisible Illness Week — Post Its & How YOU Can Spread Cheer …
This is too good not to share, watch the video about how you can participate in a post-it note campaign on spreading encouragement and good cheer!
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Random (Mostly) Chronic Illness Stuff « A Young Wife’s Tale
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You Never Know Who Your Notes May Touch!
September 4, 2010 by admin
Filed under Today's News, Announcements
This was a quaint little story that is being passed around in emails but someone sent it to me and it reminded me of what our notes are doing! Lisa
There are many times when we begin a certain task that God lays on our hearts and because we think our efforts are minimal and not making a difference, we quit the job that God told us to pursue.
The enemy loves to plant seeds of doubt and lure us into thinking that we are not capable of making a difference in this world, but with God’s help we can overcome and fulfill the destiny that God has for every believer.
If you are going through a situation of doubting your task unto the Lord, then I hope this story will bless and encourage you to never quit what God has laid on your heart because you may never know of the lives that you are touching.
I read of a man who was involved in a tragic accident. He lost both legs and his left arm and only a finger and thumb remained on the right hand.
But he still possessed a brilliant mind, enriched with a good education and broadened with world travel. At first he thought there was nothing he could do but remain a helpless sufferer.
A thought came to him. It was always nice to receive letters, but why not write them–he could still use his right hand with some difficulty. But to whom could be right?
Was there anyone shut-in and incapacitated like he was who could be encouraged by his letters? He thought of men in prison–they did have some hope of release, whereas he had none–but it was worth a try.
He wrote to a Christian organization concerned with prison ministry. He was told that his letters could not be answered because it was against prison rules, but he still decided to commence this one-sided correspondence.
He wrote twice a week, and it taxed his strength to the limit. But into the letters he put his whole soul, all his experience, all his faith, all his wit, and all his Christian optimism.
Frequently he felt discouraged and was tempted to give it all up. But it was his one remaining activity, and he resolved to continue as long as he could.
At last he got a letter. It was very short, written on prison stationery by the officer whose duty it was to censor the mail.
All it said was: “Please write on the best paper you can afford. Your letters are passed from cell to cell till they literally fall to pieces.”
No matter what your situation may be like, you still have the ability to encourage someone who is discouraged and lift up someone who is feeling low.
Take this story as an encouragement to give your all for someone else and do not worry about the results. No good work will go unseen and only God knows of the impact that your life can have on someone else.
Let us not do our good works so that we may be praised, but let us do good works so that others may be lifted up and God be praised because of our intervention.
The only thing that we can take with us into eternity is what we have done for the Lord. There are no bank accounts in heaven to show how much your net worth was on the earth, but there will be accounts in heaven of what you did to show your life as an example in leading others to Him.
— Author Unknown
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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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