“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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Talking To Your Spouse About Your Illness: How Much is Too Much?
September 1, 2010 by admin
Filed under Articles, Guest Blogger Posts“It’s as if there are thumb tacks in our bed,” I lament to my husband as he crawls in on the other side of our bed. “Logically I know nothing is there, but my body would argue otherwise.”
“I’m sorry,” he says as sympathetically as he can, but what else can he do?
“I feel a little nauseous tonight too,” I respond. “I wonder if I should eat some crackers or something. . . or if that would just upset my stomach more. It has to be the medications. It will probably pass soon.”
Before I can finish my sentence he is already asleep.
Most of us have a spouse who we would call our dearest friend. If our relationship is a good one, it is natural to want to share what we are experiencing with them. If our relationship is on the bumpy side, we may think that if he could just understand the daily pain we live with a bit better, maybe it would explain our moodiness, and in fact, bring us closer together emotionally.
We don’t want to be a burden and share about every ache and pain we experience. What a boring one-sided conversation that would be! But when we are hurting, we have a desire for those who are closest to us to validate our pain. By talking about what invisible pain feels like, it somehow has the ability to make it real . It’s not just “in our head.”
“Carry each others burdens, and in this way you will fulfill the law of Christ,” says Galatians 6:2. But at some point we need to carry these burdens to the Lord, and even a close friend, rather than just our spouse.
Although your spouse may not be suffering from a physical ailment, there are still many losses that he is grieving. For example, it is an emotional thing to watch someone you love be in pain and not be able to fix it. He may be suffering as he watches you lose the ability to do things you love. He likely misses the couple outings you once took together when you could do physically active events, whether it was skiing, or just taking long walks together on the beach. He may be frustrated that even his hugs can cause you to wince. Counselors have found that there are three major areas where marriages suffer: money, time and physical intimacy.
Your marriage may be having difficulties in all three, specifically because of the role chronic illness has taken on within your marriage. Is it possible to “share our burdens” with our spouse without overburdening him and making him want to run the other way every time we open our mouth to share another symptom of our ailments?
Consider your spouse your partner and the illness the third party
Remember that the “team” is you and your spouse up against the illness. The illness is the third party, not your spouse. Yes, you will often feel that your spouse is the spectator in your life as you go through the ups and downs of your illness, but make him a part of fighting this battle with you in a way that he is most comfortable.
It is okay (and wise) to gently educate your spouse on your illness. Allow him to come to your doctor’s appointments if he wishes, and ask his own questions about your illness, especially when you are first diagnosed. Don’t overwhelm him, expecting him to read all the books you are reading, especially if he never reads. Instead, give him a brochure with the basics or see if there is a podcast he can listen to. Talk opening about some of the responsibilities or roles may change within your marriage due to the illness. Be open about what you think you can and cannot do, for example, maybe you can no longer scrub that tub. Be forthright about them so you can decide as a team how they can still be completed.
Connie Kennemer lives with multiple sclerosis and she shares, “I am not as mobile as I used to be and often ask more of my husband. I may ask him ‘Can you work at home this afternoon?’ Or I have asked, ‘Why do you have to go to another meeting?’ How much should he accommodate me because my body is changing? He doesn’t always know when to stop and encourage me to try things myself. This is a constant challenge.”
Reasonable expectations are a must
It’s not uncommon for us to marry someone who has the opposite personality style as we do. You may feel the need to read everything you can get your hands on about your illness and attend all the support group meetings, but your spouse doesn’t respond to your diagnosis in the same way. It’s not because he doesn’t care, he is just responding in a way that is different from your own.
On the other hand, maybe you take things as they come and don’t want to get on the internet and read every detail about the symptoms you may have. Your spouse may wonder why you aren’t more interested in finding out how to best treat (and even cure) this disease. He may go as far as to accuse you of being in denial about your illness. He may want to see you be more passionate about being healed than you are. A wonderful book that will help you smooth out some of your communication is “Men are Like Waffles, Women are Like Spaghetti” by Bill and Pam Farrell.
Have information about your illness available for when he is ready
Sometimes we can just talk in circles about our pain and illness, never really getting to anything specific or a topic that can help our marriage grow. Perhaps one of the most effective tools to share something is to place sticky notes on pages of a books you’d like him to review with comments about topics you’d like to discuss. You can hand it to him and say, “There is a great example in this book about what we are experiencing right now. Would you be willing to read it and then maybe we can talk about it later?” Shares Connie, “After ten years of living with MS, I am past the whiney stage, but Rex sometimes holds back; that’s when I need to ask him more questions about his feelings.”
Creatively keep him informed about the embarrassing parts of the illness
Let’s get real. There are some illnesses that may cause you to spend a good portion of an event you attend together, not at the event, but in the bathroom. Let your spouse know this is part of the disease. Health organizations have brochures that list some of the symptoms of the illness, including these kinds of facts. You can say, “I’m dealing with some of the more embarrassing symptoms of this illness right now. I don’t really want to sit around and talk about them, but they are in this brochure in case you are interested in understanding what I am going through.” You don’t have t share details to keep him informed.
Look for other ways to vent besides always dumping on your spouse
“I realized that I held in all of my frustrations of pain throughout the day and then when my husband walked through the door I verbally ‘threw’ them him.” shares Cheryl, who lives with chronic fatigue syndrome. “My actions set the tone for the rest of the evening. I may have felt better because I got it off of my chest, but he felt worse and it lasted the whole evening. I could tell he was starting to dread walking through the door.”
Thankfully Cheryl realized the damage she was inflicting on her marriage, so she decided to take the last couple of hours each day to write in her journal, spend some time in prayer and do another activity that was relaxing. She shares about the result: “Writing in my journal gave me the chance to express my frustrations, and then prayer really began to minimize the negativity too. My husband quickly noticed a difference and it’s made our relationship so much stronger.”
Develop interests and hobbies
Too often we talk about our illness because it’s the only thing going on in our lives. Volunteer to be on a prayer chain, write that book you’ve been meaning to write, or get involved in a scrapbook club and start putting together albums for your grandchildren. You’ll find even you aren’t as interested in talking about your illness when you have more interesting things to share.
Conclusion
So. . . How much is too much? It’s different for each person and each marriage relationship. Learn to look at your situation objectively. How many times are you bringing up your illness? How are you benefiting from talking about it more than necessary? Do you need understanding? Validation? Perhaps you need actual physical help with tasks. Ask yourself if talking about your illness could be a way of getting your spouse’s attention, and this seems to be the only thing he responds to? Regardless of whether it is attention, acknowledgment or understanding, how can you get this from God instead? How is it negatively affecting your life or those around you?
And then take a moment to really ask yourself “Is there a better, more creative way that I can create intimacy with my spouse, other than just complaining about each ache and pain? What activities can I still share that could help us grow closer together?”
When you want to share about your illness, say a little prayer first: “Lord, I bring to you my pain and my emotional needs because of it. You know that I don’t want to burden anyone else with something they can’t fix, but I also want a friendship where I can just be myself and really share what I am experiencing. I really need a hug from you right now. I know how much my spouse cares about me; please give me the wisdom to know when to ask for help and comfort from him/her and when to come only to You and ask you to fulfill all of my emotional needs.”
Don’t miss other articles and important support while living with chronic illness or pain visit Rest Ministries so you don’t miss our fresh content and be entered for our monthly giveaway. Lisa Copen is the director of Rest Ministries, author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend” and founder of National Invisible Chronic illness Awareness Week.
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People With Invisible Illnesses – Look Out! We Are Everywhere
August 28, 2010 by admin
Filed under Guest Blogger PostsInvisible. Shrouded. Hidden. Veiled. Unseeable.
Sometimes I wish I could wear my illness. Yes, I have a trach, but that could be from cancer, which most people assume is the case. Sometimes I wear an eye patch because of the double vision, but there again… could be an injury.
When I go out of the house, unless I am going to the hospital, I do my hair, put make up on, try to look presentable. Even if I don’t feel good. Even if I have to stop 23 times from putting my hair up because my arms give out. Why? I. Don’t. Know.
Pride I suppose? Just because I feel like crap doesn’t mean I have to look like crap?
So what would I wear if I could wear my illness? A sign that says, “I’m not drunk I have Myasthenia Gravis, that’s why my speech is slurred and I sound like I have marbles in my mouth, and I may walk unevenly.”
Another that says, “If I’m riding with you in a vehicle, please accelerate and break gently. Too hard and my head snaps back and forth because my neck muscles are too weak to hold my head up properly.”
Probably should have one that says, “I can’t breathe because my muscles are severely impaired by neuromuscular weakness, I’m not just out of shape. I also have an unfiltered hole in my neck, so you can imagine the yuck that lives in my lungs.”
And, “Please don’t make “Arrrr, matey” sounds when I have a patch over one eye. I have double vision, probably a severe headache from the double vision, and I’m exhausted. Unless I take the lead, I’m probably not in the mood for jokes.”
I would have a sign that says, “Don’t judge me for parking in handicapped just because I look okay now. When I’m done walking through this store, I may have to stop three times on the way to the parking lot.”
And of course a sign that says, “Please don’t say, ‘But you look so good!‘ For what? Someone with an invisible illness who struggles every day of their life to choose to live and fight instead of give up and die?”
We are out there. We are someone you know.
Ever wonder why the middle age man on the subway is always so grumpy? Maybe he’s in chronic pain.
Ever think that the young woman who “can’t control her child” on the train has an invisible illness that makes her so weak and tired it’s truly a miracle she and her child are even ON the train?
We are out there. We are sisters, daughters, wives, mothers, friends, aunts, grandchildren.
And we don’t want to be invisible anymore.
Kerri Sweeris is a 39-year-old mom to her miracle child, Jacob, who just turned four. She has been blessed with a God-fearing husband who has stuck by her side through the chronic illnesses of myasthenia gravis, fibromyalgia, diabetes, osteoporosis and depression (most of which were NOT diagnosed when they got married!). She trusts God for new strength to face each day. Visit her web site at Living with Chronic Illness
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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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Living With Invisible Illness: 5 Ways To Get Over Aggravations
by Lisa Copen
“You look so good! You can’t be as bad as you say. You look perfectly healthy.” “You think you have fatigue? Try working full-time plus having four children! Then you’ll know what chronic fatigue is.” “I think you’re spending too much time thinking about how you feel. You need to just get out more.” “If you really wanted to get well, you’d at least try that juice drink I gave you last week. It won’t hurt to try it.”
And the remarks go on. . . and on.
And our heart aches.
You may be surprised to hear that nearly 1 in 2 Americans has a chronic illness or physical condition that affects their daily life. The range of diseases and included everything from back pain to fibromyalgia, arthritis to cancer, and migraines to diabetes. Oftentimes, one of the largest emotional stumbling blocks for people who suffer from illness is the invisibility of the pain. About 96% of illness is invisible. This means that the person who suffers from the chronic condition show no outward signs of physical pain or disability, nor does he or she use an assistive device like a walker or wheelchair. But the incredible pain each day can be disabling within the confines of the home.
If you have an invisible illness here are 5 tools to help let go of some of the frustrations:
[1] Let go of expectations. This may be a life-long process, but you will consistently find that people will always disappoint you, as no one is perfect-including you! Remember, you don’t understand the difficulties that your friends are going through, whether it’s a divorce, the death of a loved one, a loss job, an ill child, etc. Your illness is significant in your life. Even when people care, they still will have significant things going on in their own lives.
[2] Find supportive friends. Is there someone in your circle of friendships who is constantly belittling you or suspicious about your illness? Is he is beyond listening and instead spreading gossip about how he saw you at the grocery last week and you looked perfectly fine? This should be a relationship to let go of or, if it’s a relative, distance your self as much as possible. Illness can help us easily prioritize our friendships and that way we can spend our limited energies with those that mean the most to us.
[3] Search for the joy in your blessings. Instead of dwelling on thinking about how badly you feel, find ways to bring more joy into your life, even if it’s just appreciating the small things. Explore what makes you happy and what you are doing when a natural adrenaline takes over and you have extra energy. That’s likely where your passions are! Focus on bringing more of this into your life. And don’t let your limitations stop you. For example, maybe you once loved to garden. Now you could grow a few potted flowers or hire a neighborhood teenager to plant some vegetables and set up an automatic sprinkler system for them. You could even start a garden consulting business.
[4] Use your talents and skills for things you care about. If you’re no longer able to work because of your illness, you may feel like your skills are going to waste. Maybe you’ve always wanted to write children’s books or be a business consultant. Find a place to plug in and do some volunteer or part-time work for to be able to use these skills in an area where you feel passionate. Instead of focusing on what others aren’t providing you with that you want so much, follow your dreams and give that gift to yourself.
[5] Encourage someone else. You personally know how hard it is to live with illness and to feel like no one understands. So take time to be vulnerable with someone else who is going through this. Whether you meet someone through an online group such as National Invisible Chronic Illness Awareness Week’s message boards, or through your local support group, volunteer your time and expertise (yes, you’re an expert on living with invisible illness!) and use it to make someone elses journey easier and you’ll find your own is more enjoyable too. Are you frustrated that no one at your church thinks your invisible illness is real? Rather than stop going to church, find ways to educate them, such as a column in the church newsletter or brochures about National Invisible Chronic Illness Awareness Week. These say what to say/not to say to a chronically ill person.
None of us can change another person or make someone care-but we can educate them and give gentle advice. We must also continue to work on ourselves. You’ll find that even when you want to change it can be a real challenge, requiring discipline and motivation for a better life. You owe it to yourself to find joy despite your illness, and by focusing on how you can change your circumstances, instead of change other people, you’ll be much more personally rewarded.
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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Press Release – Invisible Illness Week Seeks To Encourage Through Anonymous Notes of Kindness
August 10, 2010 by admin
Filed under Today's News, Announcements
SB Wire- 8/9/12 – SAN DIEGO – National Invisible Chronic Illness Awareness Week kicks off awareness efforts by spreading anonymous notes around the USA and beyond that will bring encouragement to those suffering silently. Invisible Illness Week, September 13-19, 2010 is an annual event sponsored by Rest Ministries, the largest Christian organization that specifically serves the chronically ill.
When Lisa Copen, founder of Rest Ministries and Invisible Illness Week, had 4 joints replaced in her left hand during the winter of 2009 due to rheumatoid arthritis, she wore a scary looking outrigger splint for four months, 24 hours a day, that caught the attention of many people wherever she went. While some people awkwardly looked the other way, many approached her and started to share their stories.
Lisa quickly realized just how many people are inwardly suffering silently and then when they saw someone who they thought could relate with their pain, they opened up and were willing to share. Many conversations ended with a hug and sometimes a few tears. She had also talked with friends about how, when she saw someone with an invisible illness getting out of a car parked in a handicapped spot, part of her wanted to go over and just say “I understand” but she was afraid how they may respond. She discovered other people with invisible illness felt the same way!
Copen shares, “Most people are not looking for large support groups or 100 percent understanding when it comes to living with a chronic illness. People in pain often times just want ONE person who really ‘gets it.’ And that one person can make a world of difference.”
Notes may say “If you are wondering if someone cares, someone does,” or “Your pain may be invisible, but you are seen! Hang in there!” and then followed with the web site invisibleillness.com.
National Invisible Chronic Illness Awareness Week, which Copen began in 2002, will make 2010 the year of “Each One Can Reach One.” Thousands of people around the world are participating by leaving encouraging sticky notes anywhere they think of, from bathroom mirrors and community bulletin boards, to inside of envelopes when they pay their bills.
With nearly 1 in 2 people in the USA living with a chronic condition such as diabetes, arthritis, cancer, or fibromyalgia, about 96% of illnesses are invisible.* The hope of the people involved at National Invisible Chronic Illness Awareness Week is to remind people that although they may feel like they are alone in their pain, there are people who do care and understand the unspoken language of invisible illness.
It is easy to get involved. Grab a pen and some paper and share some encouragement in just a sentence! Add invisibleillness.com at the bottom so those who find the notes nowhere to discover more encouragement and get involved too!
Bloggers and the patient community will be participating in additional ways including blogging about invisible illnesses and conditions and attending virtual seminars online during the week of September 13-19.
*http://invisibleillnessweek.com/media-toolkit/statistics/
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Citizens For A World Free From Chronic Pain Giving Away Ebooks For Invisible Illness Awareness Week
September 17, 2009 by admin
Filed under In The News, Today's News, Announcements
Rome, Italy (PressExposure) September 15, 2009 — In honor of National Pain Awareness Month and Invisible Illness Week (September 14-20), Citizens for a World Free From Chronic Pain is giving away 500 free e-version copies of Forever Free From Chronic Pain by chronic pain elimination expert, Prof/Dr. Brian Rothbart.
Chronic Pain, an often invisible illness, is one of the biggest health issues facing the United States today. According to the American Pain Foundation, more people suffer from chronic pain than cancer, diabetes and heart disease combined. Studies also show that chronic pain is the leading cost of medical care in the United States and cases of chronic pain have risen as much as 38% in the last twelve years.
Citizens for a World Free From Chronic Pain (CWFCP) is a group created to inform the millions of chronic pain sufferers worldwide that theydo not have to accept drugs or ongoing pain management as the only solution.
The book being gifted, Forever Free From Chronic Pain, outlines a drug-free, surgery-free option for the permanent elimination of many types of chronic muscle and joint pain.
“I wrote this book specifically for the chronic pain sufferer” says author Prof/Dr. Rothbart. “It’s about helping people understand how their body works and the source of their chronic muscle and joint pain so they make informed choices about how to deal with it.”
Prof/Dr Brian Rothbart, internationally recognized chronic pain expert and pioneering researcher and physician, discovered the previously unknown source of chronic musculoskeletal pain and invented an innovative therapy which eliminates it without the use of drugs or surgery.
About Citizens for a World Free From Chronic Pain
To learn how to receive a free ebook and to learn more about Citizens for a World Free from Chronic Pain, please visit: http://bit.ly/16cJsX
To learn more about the book, Forever Free From Chronic Pain, please visit: http://www.foreverfreefromchronicpain.com
To learn more about international chronic pain expert Prof/Dr. Brian Rothbart: http://www.rothbartsite.com
To learn more about National Invisible Illness Awareness Week:
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The Importance of a Good Support System
September 2, 2009 by admin
Filed under Guest Blogger Posts
If you live with fibromyalgia, neuropathy, CFS, MPS, or another “invisible pain illness” there is no doubt you may come across naysayers, negative Nancy’s, friends and family who in the least don’t understand what you are going through, in the worst… don’t believe you.
Let’s face the truth, it’s easier to empathize with illnesses you can see or even are more prevalent, like cancer, heart attack, or stroke. The web site www.fibrohugs.com has an excellent “letter to normals” that I believe should be a must read for everyone, especially those who deal with fibromites in their family, friends, and even coworkers.
When I worked for a certain, now bought out, aircraft parts manufacturer, in sales, I sold 1 million dollars a year more than the next closest sales rep. But, all my boss could see was I had more sick days than anyone else. My last job was at the Disney Reservation center where I had an excellent, extremely understanding boss (he had gout so he sympathized!) who knew how hard it was for me to leave my job there, I loved it so.
So, if you don’t have support at home, work, or in your circle, what should you do? An excellent question.
I found an amazing support group online. Soulten’s fibro support is my favorite. This group of people are not only my online support group. They are my online family. Most of these people I met in the fibromyalgia chat room on www.prohealth.com. They do not all have fibro, some have depression, are bipolar, or have neuropathy like me. They are from all over the world, and I don’t think I would have made it through the past year without having their support.
One of the hardest things I had to learn was to kick the negative Nancy’s to the curb. I cleaned house of the people who refused to believe my illness is not “all in my head”. As hard as cleaing my life of these people were, and in some cases they were really long term friendships, I had to. No one should have to prove they are ill. You wouldn’t ask a cancer patient to see their chemo treatment for proof would you?
I want to thank my support system. I have the most amazing husband who works 50-60 hours a week, takes care of me and our home too. Sweetie, you are my rock and I love you. To my best friends who I am realizing worry way too much about me and are always there to lend help, even from an hour away! And, lastly to my friend, neighbor, and sister Nan.
Some days I don’t know what I’d do without you. You will never know how much the simple act of unloading and reloading my dishwasher means to me… and for that and all the other things you do for me (including picking up my prescriptions in the pouring rain) I love you (and u are NOT a negative Nancy!).
Michele Kellenbenz is a fibromyaliga and neuropathy fighter. Michele blogs her struggle, accomplishments, and tricks for fighting the good fight against these invisible illnesses. Her hope is through her blog others will learn from her mistakes and not end up in the same situation. She is currently working on her first appeal for disability. When her hands are cooperative she also likes to work on transforming recipes from sugar to splenda, and makes gorgeous beaded jewelry. You will find Michele’s blog at http://ramblingsofinsanemind.blogspot.com. Also, make sure you follow her at http://twitter.com/chelekell.
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What is an Invisible Illness?
August 24, 2009 by admin
Filed under Today's News, Announcements
Invisible illness comes in all shapes and sizes… and ages!
The purpose of National Invisible Chronic Illness Awareness Week is to provide people with the feeling of validation that their pain is real and that they can feel a sense of inclusion for a change, rather than exclusion. We also seek to bring about awareness of countless diseases, conditions, and chronic pain.
With this as a part of our purpose, our definition of “invisible illness” could be considered rather “loose.” Most illnesses are invisible at some point in the disease progression. One with rheumatoid arthritis, for example, may have the disease completely unseen in the first years of the diagnosis, yet it can become more visible as degnerations of the joints occur.
One with multiple sclerosis may go from looking perfectly healthy to being bedridden and then go into remission and have their illness be “invisible” to anyone looking for signs of sickness. Remission may last for months or even years. Or the visual signs may not show, but the illness may still be progressing.
We invite anyone or any organization that represents an illness to be involve with Invisible Illness Week. It is an opportunity to bring increased awareness to a cause you are passionate about while also educating the general public that those with illness may “look so good” but are still experiencing considerable pain.
It is no secret that those with invisible illness may be seen as exagerating their diseases or pain, or even making it up entirely. “The volunteers of National Invisible Chronic Illness Awareness Week hope to call attention to situations such as parking in the blue spots (with a logo that has a photo of the wheelchair) to responding to “advice” by Dear Abby that could be considered irresponsible.
Not just illnesses are invisible. We hope to bring awareness to conditions such as chronic migraines, autism, cancer, to bi-polar disorder. While many of us with an invisible illness have heard “you look so good” moms of children with autism are often told, “If you just disciplined him more…”
If you have to ask, “Do I qualify?” the answer is “Yes!” We’d love to have you join us to bring about more awareness to whatever health or illness cause you feel passionate about that impacts you or someone you love.
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