Your Invisible Illness Week Gift Bag

Well, the week here online has come to and end as our virtual conferences closed just a few minutes ago. But there are still ways to continue to spread the word this weekend and beyond if you would like.

Do you remember going to a party and feeling a little let down as you walked out of the room, trying not to step on the deflated balloons and brushing off the confetti. Always a little sad.

But then you get home and remember, “I have a gift bag!”

Well, we’ve put together a few goodies for you in this little post as our way of saying, “let the party continue.” Sure, some people think we are weird. We’re not actually “celebrating” that we have an illness though. We are simply celebrating LIFE… or maybe you are celebrating that you made in through ONE… MORE… DAY… That’s okay. As Georgia Shaffer said during Monday’s program, “Your good enough is good enough.”

So here are a few things we hope will be helpful:

Rest Ministries is the organization behind National Invisible Chronic Illness Awareness Week. Did you know that Lisa, who hosts all the shows and does the blog, editing, publicity. etc. does it simply out of her passion? She doesn’t have a salary or profit in any way. And Invisible Illness Week does cost money. Unfortunately, this year the expenses are by far more than the donations that came in. Be sure to check out Rest Ministries bookstore, Chronic Illness Books, where there are lots of great books, gifts, and fun items. And here is a coupon code! Sept 16-20 put in the coupon 5off25 and you will receive $5 of your purchase of $25 or more.

But wait, there is more!

If you’ve not yet signed up to receive updates from the Invisible Illness Week website (box at top right of the site) you are missing out, because when you do, you will get an email with a link to download our free ebook of 263 ways to do more than just get by.

Here are some of the other things just for you!

• Georgia Shaffer talked about how to do a self-assessment to know if you are carrying around too much emotional junk. Sign up for her newsletter at GeorgiaShaffer.com and get a free evaluation tool to see if your emotional trash can is overflowing. After all, if we hold on to too much trash, eventually our life starts to get kind of stinky, right? Georgia also has some great articles on dating tips, singles, and you can read a chapter of one of our favorite books of hers, “The Gift of Mourning Glories” (and yes, that’s “mourning.”) You may not know that Georgia was also featured in the movie, Letters to God.
• Maureen Pratt has a new book, “Beyond Pain: Job, Jesus, and Joy” which will be available mid-October. She has lots of plans for the launch! In the meantime, be encouraged by reading a bit of her popular book Peace in the Storm from Google books.
• Mary Yerkes mentioned her new coaching program for those who live with chronic illness at New Life Christian Coaching. Mary has a coaching readiness checklist to see if you are ready for a coaching kind of professional relationship.
• Pam Farrel talked about marriage and she had gobs of goodies to help you in your relationships and marriage. Sign up for her newsletter at PamAndBill.org and you will receive 25 Free or Nearly-Free Date Ideas, Red Hot Romance Ideas, Monthly Ezine and more!
• Many of you said that poet Cheryl Ricker brought you some great comfort. Watch the video about the book Friend in the Storm.
• Lots of you loved hearing from Marcia Ramsland, Organizing Pro, and she has lots of helpful downloads (for free!) at her web site, including the she mentioned on the program, the “168 Hour Time Tracker” Chart. If you want to see how well you can improve how you plan your day, this will help! If you have kids, you also won’t want to miss this Age Level Chart of Getting Children Organized .
• Karen Whiting has lots of great tips on everything from time management to ideas for kids to keep those little hands busy at her web site.
• RA Warrior Kelly Young invites you on over to her site. If you or someone you love has rheumatoid arthritis, you will find encouragement, understanding, but also loads of helpful information that will make you feel much better prepared for your next doctor’s visit!
• Jill Hart has a great book about how to “do the work at home & mommy thing.” You can get an autographed copy of So You Want to Be a Work at Home Mom and if you use the code “50ff” you will get $5 off the book!
• If you are not yet familiar with “The Spoon Theory” of Christine Miserandino of butyoudontlooksick.com and you have an invisible illness… well, let’s just say you are missing out on a great way to share how you are truly feeling without getting too specific. Awhile back Lisa shared on Facebook she was ‘all out of spoons’ and someone suggested to ‘buy plastic.’ Know the lingo and where it originated from.
• Jenny Prokopy from chronicbabe.com has a free eNewsletter (which is literally called a “Goodie Bag.”
• The Invisible Disabilities Association. What can we say? This married couple has taken their difficulties in life with illness and has created a wealth of resources to help you not only be encouraged if you have an illness, but also tools to help you help others understand what you may be going through. We specifically recommend their booklet “But You LOOK Good!“
• Kerri Sparling is the founder of 6 Until Me, one of the largest patient blogs for those with diabetes. She is also a new mom, so even if you don’t have diabetes, but you are a new mom, you may find some incredibly helpful tips at her site, or even just a woman who “gets” what you are going through.
• And if you are in Hilton Head, SC and need a nanny, well, Jennie Krogulski is your gal, the founder of Hilton Head Nannies. (Hey, one never knows, right?)
• Rosalind Joffe, CI Coach, has some downloads for free at her site, including “: “10 Things I Want You to Know About Working”
• Trish Robichaud has a “Business Beyond Chronic Illness” coaching program and you can download her free Optimal Health Kit at ChangingPaces.com.
• Twila Belk has 6 copies of Hope and Comfort For Every Season to give away! Than you, Twila! Leave a comment below if you are interested in a copy of this book. We will randomly choose 6 winners.
  

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To Move Or Not to Move – A Dramatic Day of Living with Rheumatoid Arthritis

By Nancy Murphy

Have you ever been sitting there and suddenly realize that to get up may take either an army or a truly gifted MacGyver attempt to find any angle, ledge or unnatural bodily maneuver to help with the elevation task?

As a preschool teacher some years back, I was going on my 10th year of having rheumatoid arthritis, and trying my best to keep a smile on my face everyday. Society wasn’t accustomed to seeing an active 26-year-old occasionally struggle to walk normally, turn a knob without cringing, or perform a simple chore as bending over to pick up a piece of paper. This was my life!

I had random, no rhyme or reason, episodes where I couldn’t even manage the simplest task. The kids used to think I was the latest version of Ringling Brother’s clown school dropout, when we would sit on the floor for Morning Circle. As they anxiously jumped up and divide up into Centers, I would creatively be bending, twisting, and working my hands, elbows, and whatever strength I could summon up, just to pull myself back up to prone position. The kids would giggle and think I was just being silly. I was quite “the entertainer” to them.

However, reality was not a comical routine I daily performed while “teaching” these feeble minds, but a rheumatoid arthritis flare. Before RA, a “flare” to me was a red firecracker looking instrument in the trunk of my car you would use by igniting the flicker to signal oncoming traffic that you need help.

There you go… RA Flare is similar. It is when your joints become red and inflamed, and they make you reluctantly have to request help.

So how do you tell people, older than a preschooler, why you are not able to do the things others take for granted? And how do you humbly ask for help to do the simple daily tasks?

Sometimes, it would be nice to just have a real flare attached to your body—something that indicates you are not a mobile person this day, so “handle with care”! Unfortunately, our lives and daily interactions don’t work this way. We need to either find ways to grin and bear it, or if it’s a really bad flare—lay in bed and pray for it to pass quickly.

They can last a day or much longer, and fluctuate between pain levels of 8-10 plus. Most RA patients may experience a flare before they even know they actually have RA, or may be finally diagnosed during a major flare.

So on those bad days, you usually make very calculated decisions—to move or not to move.

Then, there is the extreme decision to call 911 or not to call 911. I’m not sure if many RA patients have had this experience, but as a woman with a pretty high pain tolerance and married to a firefighter, this was not an easy decision.

I awoke one morning around 5 AM to use the bathroom, and when I tired to sit up, my mind said “get up”, but my body said “stay put”! I quietly kept thinking, “If I move a certain way I can get up,” but the pain was excruciating—on a scale of 1-10, it was a 50! After trying, but to no avail, I woke up my husband who also tried various positions to move me, but no go. We did this battle of “Okay, I’m ready. . . NO—don’t touch me!”

My husband, being used to coaxing others into doing something that may be difficult, wasn’t successful and finally made the decision, after an hour and half of this “bed dance” to call the ambulance and let them meet my alias—the girl from the Exorcist. They came, gave me something for the pain, and waa-laa I was on my way to the ER. After that, I could pretty much tell you every road from my house to the hospital that could use road construction.

It’s amazing how even when you are wheeled into the ER with three men explaining how it took all three of them to get a 140 lb. woman out of bed—they still think you may just be exaggerating a bit! Surely, it couldn’t be THAT bad.

So the ER doctor came in and decided to move my leg in a circular 360 degree motion—which lucky for him—my husband was in between us, or I think I could of made his head do the same thing. The pain I experienced before just tipped the iceberg of how this man made me feel after this move only a skilled contortionist could recreate!

So after that, he decided I was “fine” and could leave—no steroid injection necessary! After slowly working my way out of the ER with my husband and a friend practically carrying me, and into the vehicle to go back home in pain that has now caused me to re-“enjoy” the previous night’s dinner—in the opposite direction!

Back to bed, and hope I can avoid any reason to get out of bed until this pain subsided. Finally, three hours later my husband and friend had decided they could not stand to see me in so much pain, and the doctor’s office refused to work me in, so they carried me back to the car and drove me across the county to my rheumatologist’s office, and insisted I be seen THAT day.

This was the only way they could see the difference in me—I had only come in during a flare one other time, in 13 years. So he knew it was serious! He immediately took one look at me, asked me some questions and sent me straight to the hospital. According to the nurse I was so pale, someone had asked her if I had that disease where you couldn’t be exposed to light, and I HAD a tan! I WAS sick!

After, three days in the hospital (a whole other story) and many tests, MRI and doctor visits, I was diagnosed with a hip that had basically gotten the flu. They thought I had a septic hip and that would NOT have been fun.

Was it a flare after all? Not exactly, but it was one of the most interesting experience I had ever had, when I woke up one morning and couldn’t move! I usually can read my body fairly well, and know when to move or when not to move, but this day it was “not to move”! Since this traumatic event, I can happily say, I have not had anymore days where I have not been able to even get out of bed. It can still be a struggle day to day to find ways around certain tasks, but I feel like the challenge of moving is not a defeated mission, sometimes just a detour or an alternate route. My motto I live by, are the words by Louisa May Alcott, ” I’m not afraid of storms, for I am learning how to sail my ship. ”

Nancy Murphy is a married 45-year-old woman and who was diagnosed with rheumatoid arthritis in 1980, then Myasthenias Gravis in 1991, and Non-Hodgkins Lymphoma in 2002. She lives in Central Florida and is a teacher of Deaf and Hard-of-Hearing students. Her husband and her were unable to have children, but they have two Jack Russell dogs and twelve wonderful nieces and nephews!

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Should I Feel Guilty When I Have a Good Day?

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?)

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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Mental Illness – The Invisible Illness We Don’t Talk About As Easily

When you think of someone who is mentally ill, do you think of someone who acts wildly, is completely ignorant of things around them, or even talks to himself? You may need to rethink your opinion of those who are mentally ill.

According to the National Alliance of Mental Illnesses (NAMI), “mental illnesses are medical conditions that disrupt a person’s thinking, feeling, mood, ability to relate to others and daily functioning. Just as diabetes is a disorder of the pancreas, mental illnesses are medical conditions that often result in a diminished capacity for coping with the ordinary demands of life.”

Mental illness is not a sign of personal weakness, but is a devastating disorder of the brain that affects all aspects of life. Unlike other illnesses where walks are held to raise money for research or cans are set out to collect for someone’s treatment, most who suffer from mental illness suffer alone. There is a terrible stigma about mental illness in today’s society. Mental health is decades behind the rest of the health system.

Rather than seeking help with their mental illness, many hide, hoping that it will go away. They are unwilling to admit to their illness because they are frightened of society’s reaction. Those who most need support from others, aren’t able to find the support they need because of society’s view on their illness.

According to the statistics given by the National Institute of Mental Health (NIMH), one in four Americans struggle with some form of mental illness. That is 56,700,000 Americans who struggle with devastating, typically invisible illnesses and who are so often stigmatized. NIMH also says that half of those people struggle with symptoms of not one, but two or more mental illnesses.

Suffering with any kind of chronic illness can slowly drain a person, wearing them down and making them more prone to depression and other mental illnesses. There is a direct physical link between experiencing chronic illness and depression.

Symptoms of depression include: feeling down or depressed, feeling sad or empty, loss of interest, weight loss or gain, change in appetite, insomnia or sleeping too much, feeling agitated or slowed down, loss of energy, feeling guilty or worthless, indecisiveness, difficulty thinking or with concentration, and suicidal thoughts. If any of these sound familiar to you, I recommend taking WebMD’s free confidential health check.  If it suggests that you may be depressed, print out the results and take it with you to your next appointment with your doctor.

Anyone who tells someone experiencing depression to “just get over it” or ignores symptoms as “only” emotions has no idea what it is like to be sick with depression. When it takes over, it is different from cancer, diabetes, or heart disease. Those may take your life or your health, but depression can affect your mind and your emotions.

I know it takes a lot of courage to ask for help for depression, but this isn’t something you should face alone. There are many options for treatment. Medication and/or counseling may work wonders for your depression. You may feel more comfortable talking with your specialist or your primary care physician at first. They can probably offer some treatment options or they may refer you to a doctor who specializes in mental health.

If you are currently having suicidal thoughts, please read this paragraph:
I know life is hard, and having an invisible illness makes things even harder, but there are many people who care about you and would be devastated if you were to do anything to yourself. There is hope! You can be helped. I beg that you reach out and talk to someone about your feelings. Though it is scary, you may need to be evaluated at a hospital. I know how terrifying the idea of this can be, but I hope that you are brave and ask for help. If you can’t talk to someone in person, call the national suicide hotline at they have trained counselors who are waiting to talk to you right now. I know how hard life is and I’ve been there before, but I believe you are worth helping.

Want to read more? Check out these sites:

• National Institute of Mental Health (NIMH)
• Depression and Bipolar Support Alliance (DBSA)
• National Alliance for Mental Illness (NAMI)
• Web MD on Depression

Struggling with depression or another mental illness? Find support in Rest Ministries’ Sunroom in the group Living with Mental Illness. The group is for people who have mental illness or the family or friends of those who struggle, or anyone who wants to learn more about mental illness. I would love to know you better and to answer your prayer requests.

Amber is a 23-year-old who plans to undertake nursing school in spite of the day-to-day challenges presented by living with Bipolar Disorder, Borderline Personality Disorder (BPD) and a condition called Complex Regional Pain Syndrome (CRPS) in her left arm. She loves anatomy and physiology (especially neurophysiology), is a member of pep band, and also enjoys art, cooking, and crafts if she gets a spare second (which is pretty rare). Follow her blog at Destination Normal .

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Talking To Your Spouse About Your Illness: How Much is Too Much?

by Lisa Copen

“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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The Battle with The Mirror When Living with an Invisible Illness Even I Cannot “See”

By: Jamee Tyree Miller

You 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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“I Just Want To Help!” When People Comment On Your Illness

by Lisa Copen

We may find ourselves shocked to find out just how much we are the on the prayers of loved ones who are a part of our inner circle. They may actually be concerned about us more than we realize in regard to our health. So when they say hurtful things we are left wondering about their intent.

We can do our best to rise above the hurt feelings we experience set us back emotionally. We see that we need to and recognize the concern in their hearts.

There are moments, the “wounds from a friend can be trusted” (Proverbs 27:6). This is because the remarks are truly made out of ignorance. Our loved ones are trying to say something that will get across their love. Their opinions, however, just come out in a way that at times ends up sounding all wrong.

In 1993 when I was 24 and diagnosed with rheumatoid arthritis my life changed rapidly. Those individuals at my church and people at my job felt no reluctance in telling me their opinions about my chronic illness

As a 24-year-old young woman, living over a thousand miles away from the place I grew up, the decisions I was forced into making about the treatment choices felt serious and overwhelming. I meticulously poured through brochures and paperwork researching medications, therapies and alternative treatments.

I went out of my way to see specialized doctors, such as rheumatologists. I looked closely at different medications and their instant side effects, alongside the long-term outcomes of deciding not to use certain drugs.

The variety of advice from people who knew nothing about my chronic condition felt like a personal attack against my level of common sense. I know that may sound that I lacked grace, but. . . that is how it felt. My head said to myself “The audacity!’

I must admit, of those who casually shared ignorant statements, it is those that had their opinions about my genuineness of my faith that hurt the most.

Have you experienced what Proverbs 18:2 says is a friend that “finds no pleasure in understanding but delights in airing his own opinions”?

When I was first diagnosed with rheumatoid arthritis, seeking examples from others who had traveled this unexpected road, I researched the inspiring autobiographies of Christians who who had endured physically suffering, Joni Eareckson Tada and Dave Dravecky.

They have, and still are, hearing the similar remarks and even insults, that I heard. I grasped onto the promise that our Father was the only one who truly saw my heart.

If people I did not know were able to tell these leaders in the ministry of suffering about how they came up short in having enough faith to be completely be given the gift of healing, what caused me to imagine that I was exempt from similar criticisms and skepticism? If for a moment you are wondering if something is not right with you since people suggest that you are deficient in faith to be healed, know what? You are not alone.

In addition, I’ve heard some rather derogatory remarks, and it is always difficult to simply smile and say, “I appreciate your concern, but I do not actually agree.”

Many times it feels as though everyone who is well, desires me to be in a ministry for those who are healed or a ministry that focuses on how to “get people healed” by discovering a secret formula that they believe God uses.

To be frank, I just do not have that passion for a healing ministry. Many of those already are out there. And I would rejoice at being healed, but the zeal that God has called my heart is a calling to serve where people are today– usually, still ill. I want to meet people wherever they are before they been healed. I want to be a part of in a ministry that stands by them if healing doesn’t comes on on their days on earth.

Through the Christian nonprofit I started in 1996, Rest Ministries, for people who live with chronic illness I have been blessed to have the opportunity to exhibit and speak to many audiences, including those on pastoral staff and hospital visitation teams, as well as those living with chronic pain. At every event, however, I am at risk of hearing, “If you had enough faith you would experience healing.”

Often people observe the table of our resources and books and then exclaim, “This is wonderful, but you should try ‘fill-in-the-blank-alternative-treatment-here,’ and then God would heal you, and then that could be your new ministry!”

In some strange way, though I still to get upset with the limitations and a generation of my disease, I am just beginning to understand the Bible verse 1 Peter 4:13. It speaks of considering it “pure joy to suffer for Christ.” If this means that I will have to “walk the walk” (or someday wheel?), then I will do so.

And I am not alone in this regard. You may find many people with chronic illnesses claim that though they are not especially “happy” about their limitations they have found that life is filled with deeper friendships and meaning due to the suffering they have experienced.

Yes. . . I hate pain! And I get tired of it. God does give us grace and endurance to get through another 24 hours. He also provided the Israelites manna so they could live one more day, solely depending on Him. I confess, like the Israelites, I have my moments I want to complain, “L-o-o-r-d, I’m tired of the manna!”

One will realize in time, however, that as she grows closer to the Lord the things people say will become less important and they will slip off of us much easier than we once fathomed. Although it can feel as though people are intentionally trying to say things that hurt, most often the pain they cause is not even known to them. Grow close to God and your faith in man will decrease and the emotions won’t be so painful.

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? Lisa explains in her book “Why Can’t I Make People Understand?” more ways to get past the need for friends to empathize. Discover it today so your life can be overflow with joy, not frustration.
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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People With Invisible Illnesses – Look Out! We Are Everywhere

By Kerri Sweeris

Invisible. 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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Exercising and Acknowledging Your Limitations When Living with Daily Chronic Pain

By Pam

I am currently reading the book Boundaries by Dr. Henry Cloud & Dr. John Townsend. I’m not really far into it yet, but I am discovering all the areas of my life that could be different by knowing my limits in every aspect of daily life.

Unfortunately (or fortunately – depending on your perspective) one of the first opportunities that I am actively choosing to use the methods the book has taught me is in my workout routine. Not quite the place you expect boundaries to be a “bad” thing. For some people the more intense the workout the better. You know, push past the wall and all that jazz. Where is the need for a boundary in that? But about 8 weeks ago I began working out with a personal trainer at Urban Active Fitness gym. How that can be a bad thing?

Let’s just say the term “too much of a good thing” is true.

I have learned that I have limitations because of my physical health. I figured it is working out so it would be good for me. So the harder I work the better it will be for me. WRONG!

So my trainer and I made some adjustments to accommodate my physical condition. STILL WRONG!

After each workout I would go into a fibro flare which would put me in bed and OUT of the daily life of my family.

THE VERY THING I WAS TRYING TO AVOID.

It was hard for me to see this. Last summer had such great results – I was walking everyday, sometimes twice a day. I was stretching and doing floor exercises at home every day, sometimes twice a day. Now I figured by adding in a personal trainer things would get every better. WRONG!

So last night Ron and I talked and decided that the working out at the gym with a trainer was the common denominator in my increased fibro flare ups. . . so we decided to let it go. It is so hard for me to admit that I can’t do something. It’s not hard for me to admit that I don’t want to do something. But I wanted this so bad. I want desperately to get better/healthier. It’s hard for me to admit that I have to limit myself in something I so desperately want to accomplish. However, you can’t make a fibro-wracked body do something it just can’t do.

I have learned once again that I have a limit. I have discovered a boundary. I have learned that when I step across said boundary it is UNhealthy for me. If I stay on the safe side of the boundary my life and body feel more balanced and healthier.

I admit that right now I feel like a quitter. But I’m trying to overcome those negative feelings and see this as a positive sign. It’s a sign that is directing me to a healthier, happier and more involved wife/parent/friend/person.

What limits do you have to face? What boundaries do you have that need to be highlighted in your life? It’s not easy. But it will be worth it to recognize them and abide by them. I’m sure of it!

You can read more comments from others in our Sunroom at Rest Ministries.

Pam is a 43-year-old stay-at-home-mom (SAHM) who has been married for 23 years to her college sweetheart. They have two children; a boy 16, a girl 15. She says, “I battle fibromyalgia, IBS and depression every day. I thought parenting with all of that was difficult until we hit the teen years. How do I do this?”

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