Tuesday’s Workshop Panelists Share About Relationships and Chronic Illness
September 14, 2010 by admin
Filed under Today's News, Announcements, What's New, How to Help
Our seminar today was “Relationships When You Live with a Chronic Illness” and Cheryl Ricker and Pam Farrel joined Lisa Copen to discuss friendship and marriage as they relate to chronic illness. Unfortunately Allison Bottke had an emergency and could not make it.
Lisa opened up by confessing that she was still in her PJs and had not had time to get dressed before the program. (So if you are listening in PJs, you are in good company!)
Cheryl discussed helping a friend with chronic illness and they shared what was done for them that has helped them as they cope with chronic illness. Cheryl shared the story behind her book, Friend in a Storm, of poetry written for a friend going through cancer treatment and how the gift of words is a wonderful gift.
Pam joined Lisa halfway through the program and they discussed the marriage relationship when one person is coping with chronic illness. She explained just what the difference is between men and women and what it is that makes them tick. Lisa asked Pam about the emotions involved when a spouse tells a chronically ill person, “I miss who you used to be…” Pam also shared some other tips from her book The Marriage Code.
You can still listen this program any time as it is archived. Either go to www.invisbleillnessconference.com or click in the BlogTalkRadio blue box to the right of this post.
“I loved the part on marriage and what Pam shared about how to communicate with your spouse when something slips out of your mouth that you should not have said,” shares Kelsey. “Thank you for these wonderful podcasts that I can listen to from my home!”
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Discovering A New Normal
September 14, 2010 by admin
Filed under Guest Blogger Posts
With Invisible Illness Week right around the corner it has had me thinking what my life is like living with an invisible illness. For me it has been trying to say the least.
I, like so many others who I have talked to, was a perfectly healthy, full-of-energy, lots-of-stamina, wife, mother, and business woman– until one day all of that changed.
When I say “one day” it seemed as though one day I was fine the next my whole world was changed. Not only did it change my life, but it changed my whole family’s life. The wife and mother they knew who coudl– and would–do anything they needed, was now too tired, in too much pain, or mentally couldn’t remember small details that were so important to them.
Here we are six years later and I sit here trying to make this make sense with as few words as I can I can say: I have the utmost certainty that God’s Grace, Mercy and Love, has walked our family through this Journey. It has not been easy. Lot’s of doctors’ appointment, lots of disappointment in trying to find answers. And trying to learn a new normal in our lives.
I think the hardest thing for me was admitting there was something wrong with me and listening to my body; Not worrying about what people were thinking about me.
When you look normal on the outside, meaning you show no outward signs of being sick, you know that people have a hard time understanding or having sympathy to your illness. This is something that I know first hand. I was one of those people.
That I know is one of the things that God wanted me to learn through my own illness.
My family has learned a new normal. We all understand that it may have to be adjusted day by day, but communication and honesty about how I feel is a huge key it keeping a peace around our house! No matter what God is with me always and with Him I can do all things! Maybe not the way I used to, but by His grace I find a new way!
Keri Delphia is a very social person who loves to be around people. She began her career as a hairstylist in 1987 and was passionate about it until she was no longer able to do it in 2007. Now she manages a hair salon part time and enjoys sharing her knowledge with the stylists that are just starting their careers. She has been married for 16 years and has two boys 19 and 9! They are a true joy in her life! She also has 12 chickens and 1 Rooster–quite a hoot and she loves the fresh eggs. She lives with Thalamic Pain Syndrome and has been suffering for 5 years now, but it has just been recently that she was diagnosed. Visit her blog, Pain Free Journey for more writings such as this.
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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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“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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What Illness/Health Related Newsletters Do You Get?
September 3, 2010 by admin
Filed under Free Ways to Help, Online Ways to Help, What's New, 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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Press Release – Invisible Illness Week Team Offers Free Ebook of 263 Tips
September 1, 2010 by admin
Filed under Free Ways to Help, What's New, How to Help* Feel free to share this on your blog, post it in your newsletter, whatever! Thanks for your help.
Invisible Illness Week Team Offers Free Ebook of 263 Tips
20 Experts share their best tips about living with a chronic illness, from coping with illness and relationship tips to travel and homeschooling.
San Diego, CA — (SBWIRE) — 09/01/2010 — National Invisible Chronic Illness Awareness Week is September 13-19, 2010. A free 80-page ebook is now available for download to anyone who signs up for daily updates from the web site invisibleillnessweek.com .
“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 Farrel, advocacy authority Jennifer Jaff, and illness advocate Jenni Prokopy.
Over 20 contributors share their best tips to live successfully with chronic illness on a variety of topic. “These experts are people who have the credentials,” says author Lisa Copen, “but more importantly, they have experienced illness themselves or health issues of someone close to them. Their tips come from the experience of living with the challenges illness gives us.” The chapters include coping tools, relationship issues, career, faith, and practical tips, from traveling with an illness to homeschooling. There are also many tips on how to encourage someone who lives with a chronic illness.
National Invisible Chronic Illness Awareness Week is an annual event that features a free virtual conference online 9/13-17 with speakers each morning 10:30 – 12 USA Pacific time. There are a variety of ways a person can get involved including blogging for the cause, completing the Meme “30 Things You May Not Know About My Invisible Illness”, or joining the campaign on Facebook.
With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses.
For more information see http://InvisibleIllnessWeek.com .
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The Battle with The Mirror When Living with an Invisible Illness Even I Cannot “See”
August 31, 2010 by admin
Filed under Guest Blogger PostsYou know there are times where the inside just does not match the outside. If you have ever watch What Not to Wear (I love me some Stacy & Clinton), on just about every episode you hear them say that they want the beauty on the outside to match the beauty on the inside. So they work and change and fluff the participant until she (and sometimes he) feels as lovely and confident about their outside as they do their inside. Their lovely $5000 new wardrobe shines as brightly as their personality. You’ve got to love a happy ending.
But what if you have the reverse problem? What if you could wish that your insides looked as good as the outside? After my diagnosis, I was so happy to find Butyoudontlooksick.com. Finally to find that someone else had heard that phrase as much as I had!
If I had a dollar for every time I heard, “But you look great/happy/healthy/etc” after honestly answering the dreaded question, “How are you today?” I would be a millionaire and living on an exotic island somewhere. You can only hear it so many times before you just begin lying and saying “Fine” and moving on.
I even sat in class once and we had a visiting speaker who shared about faith and health and he made the statement that everyone in class was healthy as we were all able to sit in class, yada, yada, yada (I’m not sure what he said after that because I was really fighting the urge to throw the stapler at his head).
So while others are trying to figure out how to get their hair/clothes/etc to reflect whats on the inside, I’m trying to figure out if it is ever possible to make my insides catch up with my outsides. I finally found a hair cut and color that I adore. Weight loss has helped me feel more comfortable shopping for clothes. And I’m finally starting to get a handle on my “style.” So while its nice to hear “You look fabulous,” I just wish I could answer, “Thanks and you know what, I FEEL fabulous.”
Sometimes I wonder if I shouldn’t just stay frumpy so that its more “believable” that I’m sick. Maybe add some extra light powder so I look extra pale and leave my hair a hot mess. Maybe then I won’t get the funny looks (followed by eye rolls on occasion) when I explain why I can’t do x, y, or z because I’m in pain or nauseated or you can fill in the blank.
But I’ve come to a point where I’m not ok with that. This post by Stephanie, a guest writer at BYDLS, “Confessions of an Unapologetic High-Maintenance Spoonie” gave me a boost in confidence that even though I’m a “spoonie” and my insides don’t quite add up to my rockin’ outsides, that its okay to be above the frump–even if it means getting the side-eye everyone once in a while. One day that may be true. I may feel as good on the inside as I do on the outside.
I’m still holding out hope for a cure (well, a cause first then a cure). There may be battles with the mirror but in the end I’ve won the war. I am more than my illness. So in the meantime, I’m rockin’ a new ‘do and some new jeans (and maybe some heels one day!).
Jamee is a wife, a mom and a follower of Christ. She says, “I am also a warrior battling multiple chronic illnesses. In life, I have learned that sometimes things happen and life doesn’t always go back to the way things were. Instead, you must find a new kind of normal. ” Read her blog A New Kind of Normal.
Note from Lisa: We’ve all felt the way Jamee describes above. If you need a smile watch this popular video going around the internet of a little girl giving herself some affirmations!
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When Co-Workers are Chronically Ill Or Have Cancer: How To Support Them
August 23, 2010 by admin
Filed under Guest Blogger Posts
“Success is the sum of small efforts, repeated day in and day out.” Robert Collier
Continuing to work with cancer or a chronic illness is very important for many people. It is one of the few parts of life that a person can feel they have control over. Having a sense of normality is essential when treatments, frequent visits to hospital become an unwelcome part of everyday life. Working can provide a welcome relief from daytime TV.
Here are 5 tips for supporting individuals working with cancer or chronic illness:
- Treat them as a normal person; they are still the same person and not defined by their illness. They may look different, but it is the inside of them that matters most. Make them feel part of the team again.
- Meet more regularly. Involve them in agreeing manageable workloads. Break tasks down into smaller steps. This makes any job more manageable and encourages a sense of achievement. It gives a great sense of personal satisfaction to leave work each day having achieved something meaningful. Prioritise together so individual knows the most important tasks to concentrate on.
- Many illnesses are invisible and you will need to weigh up the individual’s right to confidentiality and disclosing to the team. The individual is the best person to guide you. It can help to be open with others close by who can better understand absences and also be more in tune to support the individual.
- Consider a buddy scheme. With the permission of the individual it can be very successful to partner them with someone who has also experienced cancer or a chronic illness – even if they are in a different office. It helps to share how they manage daily activities which might seem manageable to most but impossible for the person who is unwell. It can be a chance for them to share how they manage life outside of work as well.
- Each person is different and keeping the conversation open in vital. As a manager you may have experienced many people with illnesses but no two people are the same. Each one of us copes differently and need to be managed accordingly. All the answers can be found with good communication with the individual.
Carolyn Matheson is a Master Certified Coach, and works with executives and their teams across the world. She is one of the worlds leading executive coaches whose world turned upside down 5 years ago when diagnosed with a chronic illness. Follow her on Twitter @capcoach
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When Illness Hits a Young Married Couple
August 22, 2010 by admin
Filed under Guest Blogger PostsMy husband, David, and I are in a somewhat unique situation with our invisible chronic illness. Although I am the caregiver, and he is the one with debilitating pain from Psoriatic Arthritis, he is the one that goes to work every day. David is a computer programmer. He sometimes works from home, and his schedule is somewhat flexible. We are blessed that he has a job he can perform even with his disability.
My job is to do everything I possibly can so that going to work is all that David has to do. I call his doctors, pick up prescriptions, duke it out with the insurance company, walk the dog, clean the house, prepare meals according to his dietary needs, get the oil changed, etc. I do it all so that when David gets home at night, he can rest. Dinner is usually ready, and he can lie on the couch watching a movie or playing on his laptop.
I used to get frustrated that David was disabled instead of me. I could be the sick one. I’m home all day anyway. David’s a great husband. He’d take care of me.
I used to think that . . .
Until David finally told me that if I was the sick one, he’d still have to go to work, and then come home and do most of the things I do for him. (Which is exactly what many caregivers have to do.) If I had his arthritis pain, I wouldn’t be able to walk the dog or grocery shop any more. David said it’s really better this way. God knows exactly what he’s doing. I may not always understand or trust God the way I should, but he is sovereign.
Matthew 10:28-31 (NIV) says, “Do not be afraid of those who kill the body but cannot kill the soul. Rather, be afraid of the One who can destroy both soul and body in hell. Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from the will of your Father. And even the very hairs of your head are all numbered. So don’t be afraid; you are worth more than many sparrows.”
I asked David what advice he would give another couple with chronic illness. His answer is one I can’t top:
“There are days when I’m in terrible pain, and Ashley goes out of her way to help me. Then there are days when I’m in terrible pain, and I go out of my way to help Ashley.”
“A Young Wife” suffers from TMJ Disorder. She loves Diet Coke and spoiling her dog, Henry. In February of 2008, her husband, David, was diagnosed with Psoriatic Arthritis. Having a chronic illnesses as a young married couple has changed their lives. Visit her web site, A Young Wife for more encouragement.
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Those with Invisible Illness Are A Hidden Minority Group – Among Us But Invisible
August 17, 2010 by admin
Filed under Guest Blogger Posts
Imagine a minority group in the United States that has it really rough.
How rough? They have a hard time getting employment, and a large percentage have been unemployed for years and are dependent on the State or the generosity of friends and relatives. Those who do work often work only part-time or low-profile jobs. They live in relative poverty and sometimes have trouble affording housing or clothes.
Some members of this minority are not able to drive. Many do not own their own homes.
Moreover, the society at large frowns upon members of this minority talking about any aspects of their lives that are different from the lives of non-minorities.
These minorities are encouraged to pretend that they are not part of their minority group, and they are rewarded for passing as members of another group. Indeed, their career success depends on their ability to pretend that they are not part of the minority group.
Media portrays the members of this group as lazy, deceptive, self-indulgent, mentally ill, and taking advantage of others.
In the dating arena, being this type of minority appears to decrease a person’s desirability, all other things equal, and thus these minorities often seek to date other members of their group.
Very few members of this minority group are represented in the top levels of business, entertainment, or policymaking. A lower percentage complete college or postgraduate education compared to the general public.
All in all, these minorities tend to have less money, less education, smaller social circles, lower-paying jobs, less disposable income. Their rates of depression, anxiety and other mental disorders are much higher than in the general public.
Which is to say, members of this minority group have it rough.
Who are these minorities? Those with chronic, debilitating illness.
They are there all around us. People have varying degrees of disability from chronic illness, but the U.S. Department of Commerce estimated in 1997 that 20.6 percent of the population had some degree of disability from illness, but only 6 percent of these illnesses were “visible” in the form of a cane or assistive device.
It’s like a hidden world existing among the normal world but largely invisible to it, since only a small percentage of illness can be seen with the naked eye. But simply develop a health condition yourself and start frequenting the health forums and web sites, and you will get a sense of the vast populations of very sick people with correspondingly marginal lives.
Besides the suffering associated with their actual illnesses, members of the “sick” minority also frequently deal with:
- Lower standard of living.
- Poverty.
- Divorce.
- Marital and family strains.
- Not obtaining desired education.
- Social isolation.
- Losing friends and connections.
- Missing out on certain social activities, hobbies, traveling or other enjoyments.
- Quitting or scaling back on jobs or careers.
- Down-scaling career goals or choosing an easier career.
- Discrimination.
- Having to hide the fact that they are sick.
- Taboos against talking about their lives, as though their situations are a shameful secret.
- Restrictive diets for health reasons.
- Not being able to eat out at restaurants.
- Anxiety about whether they can meet their needs while in public.
- Belittling by doctors, being told it’s “all in their head.”
- Being doubted or accused of malingering.
- Being discounted.Most notably, I have noticed that healthy people (and some doctors) sometimes seem to write ill people off as though they are in some other, lesser category, not real people. The subtext seems to be: “You’re just a sick person, so you have to be satisfied with the life you have. You can’t expect the sort of things a well person enjoys. Just be grateful fo any bit of relief or help you get.”
From the outside, it might seem like people in wheelchairs shouldn’t expect to use every building or every form of public transportation; or people with unverifiable chronic pain shouldn’t expect disability pay; or people with chronic Lyme disease should not expect to be cured. But when the illness is your own, putting up with suffering and a limited life becomes more than hypothetical, and one starts to take issue with any limitations or extra suffering that are not unavoidable due to the condition itself.
We all deal with the breakdown of the body at some point. Sick people are not “other”; they are “us.” If things had gone slightly differently, any healthy person could be sick, too. Indeed, when the time comes and you are no longer healthy, you will wish that sick people were valued and treated well.
What would it look like if sick people were not a “minority” group?
- Social Security disability funding would be a high priority, and those unable to work would have help applying for disability, receiving fair evaluations, and paying for their living expenses and treatments.
- Universal health care, with no penalties for pre-existing conditions and available even if a person is not working, would be a godsend for many chronically ill people.
- Sick allies would work on connecting sick people with the rest of the world. Healthy people would learn to be comfortable around, listen to, and to be friends with sick people.
- Instead of stigma, sickness would be afforded the same kind of respect we give to marathon runners or Ph.D.s or others who endure long and challenging hardships, since dealing with long-term illness takes strength and perseverance.
- We would aim for a high quality of life for the hospitalized and the elderly sick, including social contact, choices about their lives, changes of scenery, time outside, creative outlets, and contact with family and friends.
- We would respect contributions that sick people can make.-There would be affirmative action for sick people, such as understanding in employment interviews, college admissions, medical school admissions, or hiring practices. Sick and formerly sick people have something special to offer, and their presence brings diversity.
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