Invisible Illness Week Facts to Tweet

The most popular topics about invisible illness seems to be the misconceptions people have about a chronic disease or pain that cannot be seen.

Are there really that many people with invisible illness?
Why another awareness week? Enough already!
You can’t be that sick.
If you were that sick, you wouldn’t be able to stand here and talk to me.
But you look fine to me.
If you just thought about something other than your illness, you’d start to feel much better.

Do any of these sound familiar?

Help increase awareness about nearly any illness (most of them are invisible), by tweeting these facts below and reminding people that situations are not always as they appear.

We’ve found some interesting facts we think you will like and highlighted some few special statistics about invisible illness or chronic pain. You can find sources for our statistics here.

You can follow us on Twitter and then add “RT” at the beginning (that means you are retweeting it) and @invisibleillwk. That way people know the source where you found it and they can sign up for it themselves.

Facts to Tweet About Invisible Illness

RT @invisibleillwk #iiwk12 Fact #1 Nearly 1 in 2 Americans (133 million) has a chronic condition. Not U? It’s someone U luv! http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #2 About 96% of illnesses are invisible. No visible signs and no assistive device used. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #3 The significance of one’s faith has shown to help one handle a stressful medical event better http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #4 Sadly, the divorce rate among the chronically ill is over 75 percent http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #5 Plp with illness are young! 60% are between the ages of 18 and 64 http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #6 By 2020, about 157 million Americans will be afflicted by chronic illnesses. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #7 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #8 Depression is 15-20% higher for the chronically ill than for the average person. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #9 Sadly, physical illness or uncontrollable physical pain are major factors in up to 70% of suicides. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #10 About 1 in 4 adults suffer from a diagnosable mental disorder in a given year. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #11 Invisible illness includes #autism, #bulimia, #migraine pain, #arthritis, #bi-polar disorder #depression. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #12 More plp need pain treatment than those w/ cancer, heart disease, stroke & diabetes combined. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #13 Less than 2 hours is spent on pain management in most medical school curriculum http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #14 Most people prefer illness mgmt advice from health professionals before their spouse http://ow.ly/72fO

RT @invisibleillwk #iiwk12 Fact #15 19 million of plp who are severely disabled do not use a wheelchair, cane, crutches or walker http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #16 4 in 5 health care dollars, 78% are spent on people with chronic conditions in USA http://ow.ly/72g4

RT @invisibleillwk #iiwk12 Fact #17 Patients with a deep faith recover faster from depression,even when illness doesn’t improve. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #18 Faith reduces stress, loneliness, pain, & anxiety according to American Cancer Society http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #19 Over half of the chronically ill say the worst thing someone can say is “you look great.” http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #20 34% of respondents said the person closest to them with a chronic illness is a parent. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #21 Most medical residents leave med school believing that 80% patients R addicts seeking drugs. http://ow.ly/72gP

RT @invisibleillwk #iiwk12 Fact #22 Over 75 percent of patients with depression complain of physical pains. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #23 The # of plp in the US 65 > will double in the 25 yrs to 20% of Americans = more illness. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #24 Depression can predispose patients to chronic pain due to chemical imbalance it creates. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #25 Faith gives plp w/ health challenges peace of mind & will to live http://ow.ly/6Otw

Popularity: 9% [?]

How to Get Some Sleep When the Pain Won’t Go Away!

Shari Smith

Since my original injury in September 2009, I’ve had ridiculous issues with sleep, or should I say the lack thereof. I’ve tried multiple prescription sleep medications to no avail. Even strong pain medications make me feel absolutely horrible overall but don’t always break through the pain cycle enough to help me to sleep.

I am asked sometimes about the pain level and how I manage to function with it. To give you an idea, look at the McGill Pain Index, which details various types of injuries and the associated pain levels. The pain from CRPS (also known as RSD or causalgia), is rated slightly higher than the amputation of a digit. That’s right, the pain is WORSE than that you’d feel if you cut off a finger or a toe. Needless to say, sleep is elusive more often than not.

Clearly our bodies need sleep to heal and to renew. Lack of sleep hinders that renewal process, causing even greater pain, and a vicious cycle begins. Even worse, pain can awaken you once you have actually fallen asleep, resulting in non-restorative sleep. Altogether, the twin symptoms of lack of sleep and chronic pain can then result in loss of cognitive function.

I wish that I could say that I’ve learned coping mechanisms to help me deal with these problems, but the reality in my case is that “the best defense is a good offense.” How so?

• I don’t schedule early morning appointments if at all possible.
• I warn family and friends that I may at any time find it necessary to cancel plans.
• I keep my NOOK Color loaded with plenty of light reading to try to distract me during times when the pain is at its worst.
• I schedule medications that are most likely to cause drowsiness in the evenings.
• I don’t even attempt to drive when I am sleep deprived (which is pretty much all of the time). Driving while sleepy can be as dangerous as driving under the influence.
• I have surrounded myself with a support network that genuinely attempts to understand and accept the limitations of my injury and disease.

Most importantly, I’ve learned that I myself must accept the cognitive loss that comes with the pain and lack of sleep. As frustrating as it often is, beating myself up over it accomplishes no good. Instead, I strive to be thankful when the good days come and accepting when the day doesn’t go so well.

How do you cope with loss of sleep, especially when it is caused by pain?

About the Author:
Shari is the wife of a career Air Force man and mama to a beautiful teen daughter. After spending twenty years in the corporate world, both in the legal/financial fields as well as more recently in online media specializing in women’s interests, Shari’s professional life took an unexpected turn when an injury paralyzed her left leg, resulting in Complex Regional Pain Syndrome.

 

Not content to merely accept such a diagnosis and determined that something positive would come from the negative, Shari launched Rain into Rainbows, which serves both as an outlet for Shari’s thoughts and emotions regarding her life-changing injury and chronic illness, as well as a resource for other women with similar experiences. Her hope is that by sharing her story with others, she might begin to turn the page into the next chapter of her life as well.

Popularity: 16% [?]

What it is like to have an Adult Child with Fibromyalgia

When I started my website I forewarned my parents that I’d like them to write a little something about how they have felt having an adult child with fibromyalgia. I think hearing different perspectives are good for everyone. Below are some of my mom’s thoughts. Soon I will have my dad’s thoughts as well.

From my mom. . .

 

Like all parents, we are so very, very proud of Felicia. We love her dearly. Yes, she’s the apple of our eyes – and The Helpful Hubby is the best son-in-law any parents could have. Well enough of the good stuff – now for the unexpected. Felicia has handled fibromyalgia better than I thought was humanly possible. Maybe receiving the diagnosis when a busy student at a large university is the time to get the crummy news. She couldn’t stop, she didn’t have too much time to reflect, and those papers and exams were always calling for attention. (I’m sure not a minute was wasted.)

 

Felicia’s diagnosis took about a year. She had not kept us “up to speed” about the number of different doctors but in an efficient fashion, we got the explanation, “don’t worry, don’t come up, there’s no cure.” Anger and fear weren’t really my feelings, more: sadness for my “baby,” “Ick, how can I help Felicia, maybe it’ll go away if it’s sort of a chemical imbalance.”

Mainly I wondered about her ability to conquer her courses and what, if any, adjustments the university would/could make. I wondered if she would get so bad that she would be confined to a bed. Then Felicia brought home a fairly technical book. I read most of it. She’s been bringing home reading material ever since. I’m not quite so ignorant about fibromyalgia now.

We still really want to help Felicia but, that is hard to do, especially with her living out of state. Always my first instinct is to wrap my arms around her and just hug tightly for a really long time—maybe hours. Well, with fibro, that’s not a warm, cozy feeling for her to say the least. I can’t say, “It’ll get better,” because it may get worse before it gets better. I want to bake goodies, but know I’ll be chastised because she’s trying to eat nutritiously. Since I live far away, I can’t run over and do the laundry or dusting. She’d probably love it if I’d fly out for seasonal gardening though. I’d like to baby her in many ways, but that doesn’t make her fibromyalgia get better, it doesn’t help Felicia deal with life better, it just makes Mom feel better.

Felicia, my husband, and I talk frequently. Felicia and her father have a very special, loving relationship. Mostly I whisper little prayers throughout the day. We try to support both her and The Helpful Hubby in any way we can from a long distance.

Generally when I see or talk with Felicia, the first thing I do is figure out if it is a good or bad day. When I can visit her, usually her general posture or eyes tell me, but sometimes it’s the braces, compresses, or verbal warning of, “don’t touch me.”

I hated during my pregnancy when everyone else thought it was the only topic to talk about. So, if Felicia wants to talk about fibromyalgia, I’ll talk, but I don’t make it the core of every conversation. Felicia is so much more than this condition. She is a vibrant, interesting, creative, intelligent, compassionate, and humorous woman who happens to be dealing with a lot of pain.

The major way I see her coping with fibromyalgia is through determination. If she says she is going to do something, it will be done. It will be on time and correct, and with bells and whistles, when appropriate. She has been the family organizer since age 4.

She tries to stay positive. It drives her crazy when people don’t even try to be pleasant when dealing with the public. Felicia is not one of those obnoxious cheery people. She wakes grumpy, gets headaches, has fibromyalgia; but she looks for ways to make things better, she doesn’t dwell on the spilt milk in life, and somewhere she has learned to make lemonade from the lemons life gives her.

Felicia monitors her activities. She is a really good planner. She will space steps out so that everything isn’t left until the last minute. Although she deals well with crisis, she hates being put in that position due to others poorly made plans.

Felicia uses tools that help make household chores easier. One, not-so-obvious “tool,” is being organized. She claims that everything in her house as its own “home.” She can tell someone exactly where to find almost any item in her house. This is helpful for others when they are trying to help her – no need to search around for items or feel badly asking where something is.

She researches fibromyalgia, reads books and articles, searches on-line, and learns continually. She is active in local groups, and of course she started her website and tweets. She really believes in a place for positive examples of people living with fibromyalgia. She hopes to be a banner of information for most, a shared moment for many, and a ray of hope for some. As her mother, I want her to succeed. As a person, I want you to succeed too. May this find you making progress which will lead to your good day.”

About Felicia: “I’d like to think that everything that I do in life is done with passion. To me it’s not worth doing something if you don’t believe whole-heartedly in it! I enjoy photography, flowers, baking, traveling and bicycling and am an active volunteer with my local Arthritis Foundation office. Everyone who knows me also knows my favorite color is purple. I started my Felicia Fibroblog in hopes that I would be able to create a community where people with fibromyalgia and other medical conditions relate. I planned to share resources I have found to be helpful as well as my own personal tips and tricks. I am lucky enough to know a few other ladies with fibromyalgia and will sometimes share their experiences as well.”

Popularity: 9% [?]

Is Living With Illness Choosing to Give In?

Lisa Copen

Nearly one in two people live with an illness, and most chronic illnesses are invisible. Conditions such as chronic fatigue syndrome to diabetes rarely have visual side effects that people can see. It creates a challenge for those who live with invisible daily chronic pain, symptoms, and side effects.

For example, though I look fine on the outside, I have lived with rheumatoid arthritis for 18 years. It has been degenerative, despite the best of medical treatments. Recent tests have revealed that I have shoulders that are so disintegrated it’s amazing they still work, knees full of pieces of bone and old blood clots, and osteoporosis.

I have started seeing a new rheumatologist who I hope will more aggressively treat my disease and slow down its progression. I am 42. I told my physician, “My son is 8. I need at least 10 more good years. What can I do to make this happen?”

Despite the detours, I have had the opportunity to build a nonprofit organization of nearly 15 years, to serve those who live with chronic illness, through a Christian foundation of faith. Although I believe God still heals today, He rarely does it according to our schedule. In the meantime, there is a strong need for friendship and support.

Between my family and ministry, I have ample reason to get up out of bed each day and not allow my illness to define me.

I have never given in and allowed it to consume me.

But because I do not enter marathons, audition for reality TV show contests on deserted islands, or sign up for karate class, some people assume I have.

“You’ve just given in to your illness,” I have heard from both strangers and friends. “You need to fight it more.” This is often followed by their specific advice on what I need to do to “fight it.”

What defines “giving in” to your illness? There are a variety of ways that people who do not have an illness define the actions of those who are ill.

1. We are not using the alternative treatment of product that they sell that will make it all go away.

My husband was recently berated by a friend’s wife, “We are so mad at you guys!”
“Why?” he asked.
“Because you won’t try the water!” she replied.
Honestly, I’ve done my research and if I am going to go with a marketing scheme that promotes health benefits for just $200+ a month, it will be the chocolate one. I mean, who doesn’t like chocolate?

2. We are seeking health assistance from doctors or medical specialists.

A friend on recently posted on a social network that he cured himself of a disease by ignoring the “mumbo jumbo of doctors” and asking his dad for advice. He claims he “never gave in.” In his eyes, because I am seeing a rheumatologist with “MD” behind his name, I have chosen to give in. No one cares that my rheumatologist happens to have his own clinic about specialized medicine, and that has written books on the alternative treatments he uses with patients, in addition to Western medicine.

3. We are pacing ourselves.

Chronic illness uses up a great deal of energy and only the one who lives within the body knows what they can and cannot do on particular days. Sometimes we have to give it our best guess and make a choice, not positive if an event will cause us to be tired for twelve hours or four days. When we choose to not attend an outing we’d planned on because we are in deep pain, we frequently hear, “Oh, you are just giving in to your illness. You are letting it control you.” No, we had to make a choice and we did. Healthy people will understand this when they reach about age 80.

4. We are not where someone wants us to be spiritually.

We all grieve, we question, and we sometimes get depressed, regardless of our faith. But if these emotions are noticed by others they are quick to offer the spiritual version of “Don’t worry, be happy.” We are told that we are allowing the sin in our lives to get the better of us and it’s causing our illness. We are not praying consistently, or hard enough, or in the right way. One man recently told me that I needed to try a particular alternative treatment (that he happened to sell) and if I did not, then it was obvious I was just giving in to my illness and really did not want to get well … and that God knew that!

5. We are not doing physical activities that we are expected to do.

If you watch well known magazines written specifically for those with certain illnesses, even they are guilty of featuring people who have the disease but are still able to do extreme physical activities. A person with rheumatoid arthritis may run a 25-mile marathon and are quoted saying, “I chose to never give up.” I have chosen to never give up either, but I am blessed to get my feet into extra-wide diabetic shoes and walk around the grocery store. My own limitations, or those of one who uses a wheelchair each day, is not something that is a measurement of determination or stubbornness about our disease.

Each person who live with a chronic illness knows the daily difficulties in finding a balance between living his life in the fullest way possible, and managing his disease effectively at the same time. There will be many times that our choices do not make sense to people around us. When we hold back from a new treatment or a fun outing, we will be told we are “giving in” and letting our illness define us. And when we take a chance and stretch ourselves, we will be told we are not thinking things through or considering the consequences or risks involved in our choice.

If you live with a chronic illness, only you are capable of making the wisest choice possible based on many factors. If you love someone with an illness, be cautious in sharing your opinion about his or her decisions. If you are genuinely concerned, instead of offering advice, ask questions, such as, “I know you must have given a lot of thought to your decision to (fill in your blank here.) What was it that persuaded you?”

About the Author: Lisa Copen is the author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend”, founder of National Invisible Chronic Illness Awareness Week and Rest Ministries. She is a sought-after speaker who brings joy, humor, and hope, to those who live with chronic illness, from her own 18-year journey with rheumatoid arthritis. This article was formerly featured at the Huffington Post where you can read 40 comments.

Popularity: 11% [?]

Why Are We Expected to Be Brave in the Face of Illness?

Lisa Copen

The headlines read “Oliver Stone Hails Michael Douglas’ Brave Cancer Fight” and “Brave Brett Michaels wins Celebrity Apprentice.” Even as Belgian action movie actor Jean-Claude Van Damme recovers [this week] from his recent heart attack, I’m sure his friends are saying he is being brave about even the admission of this attack, which came just one day after his 50th birthday while filming a kickboxing movie.

Are those who suffer from stage-four cancer, such as actor Michael Douglas, brave? Are those of us who live with the chaos of chronic illness, such as musician Brett Michaels, who is one of 23 million insulin-dependent diabetics, brave? Are these individuals more courageous than actors Patrick Swayze or Farrah Fawcett, who lost their battles to cancer last year?

Does our society create grand expectations that exemplify bravery and courage as the only acceptable response to an illness crisis? Celebrities coping with health crises are just like the rest of us. They get up each morning and put one foot in front of the other, whether that means an unpleasant medical treatment or going to the grocery store–but these actions are typically photographed and labeled as signs of “bravery.”

I am sympathetic to the friends of celebrities who appear as a guest on a television shows such as The View and are asked to reveal how their celebrity friend with illness is “really doing.” There is no appropriate answer. If someone is truly a friend, as Danny Devito is to Michael Douglas, he is not going to say, “He feels terrible and isn’t looking too hot either.” Instead he will comment on how brave his friend is. It’s a considerate response to an awkward question, and it does contain a hint of truth.

Is there an alternative to being brave?

While there are tools online such as an illness symptom checker, there are few ways to understand how one is coping emotionally with a disease. If those of us with illnesses were to sit in bed and sob uncontrollably, how long would it take until our friends stopped calling us brave and said we were a basket case? Can a good cry be a sign of bravery, too? Who among us is not brave while fighting a disease that threatens to take away our quality of life or life itself?

What exactly is bravery?

The definition of the word “brave” includes possessing or displaying courage, being able to face and deal with danger or fear without flinching, and making a fine appearance.

I believe anyone has dealt with the fears of a health crisis certainly has moments of bravery. But let us not forget that emotions are fragile at times; allowing ourselves to be vulnerable and let some emotions through is not only acceptable but a healthy coping tool. Tears do not signify a lack of bravery.

When our loved ones see us look the doctor in the eye and ask, “How long do I have to live?” they are seeing us “make a fine appearance” as the definition of bravery possesses. They may not see the tears that fall uncontrollably in the lonely moments at 3 AM. Brett Michaels’ Rock of Love show may have been a successful indulgence, but when he was fighting for his life, it was his daughter’s fear of growing up without him that “gave me this unsinkable strength,” he declared on Oprah on May 19, 2010. “It gave me this amazing courage to want to survive.”

How does one show bravery in the midst of illness?

In 2009 I spent eight days in the hospital when I contracted the flesh-eating bacteria in an ankle wound that quickly spread up my leg. To be honest, I felt brave at times. I did not shed a single tear. My husband brought my then-five-year-old son to the hospital to play with the electric bed and eat mac-and-cheese from the hospital cafeteria. I gritted my teeth every couple of hours when another medical professional would visit my room with the intent of causing some kind of pain.

So, within the context of the definition of bravery, I made a fine appearance. I don’t know if I possessed courage, but I tried to display it. When faced with danger (like the daily debriding of the wound) I did my best not to flinch. But what choice did I have? The needles, IVs, MRIs, and pain medication disbursement were not in my control. I tried to be brave, but most of the time I was just choosing to “act” brave, despite my fear of the procedures and pain, frustration of the circumstances, and even panic over the possibility of losing a limb or even my life.

Can faking bravery can be enough to get us through?

In conclusion, let us remember that bravery can be a choice. Even if we do not feel courage, we can still seek to display it, we can attempt to face danger without flinching, and we can make a fine appearance. At the same time, let us not forget that we are human beings who were designed to feel fear, need affirmation and loving support, and shed tears. For myself, this is intertwined with my faith in God and knowing when to surrender to the emotions and when to surrender them over. Finding the right balance between putting on a brave front, and being true to our own emotions is, I believe, one of the best coping tools we can discover for the journey of chronic illness.

Bravery comes in many forms, not all of them gallant or daunting tasks. Michael Douglas’ films list is likely not important to him at the moment. Despite side effects of treatment for stage-four cancer, he recently walked his daughter to school, reveling in the moment that he was able to do so and wanting to treasure the simple moments. His bravery came in venturing out into the public eye, where his appearance and strength could be observed and discussed. Each of us must decide our own definition of bravery, and for those of us who know how much we suffer in silence, it may be as simple as making a fine appearance and then being our true selves around those we love and trust the most.

About the Author: Lisa Copen is the founder of National Invisible Chronic Illness Awareness Week and Rest Ministries, the largest Christian organization that specifically serves the chronically ill. This article was formerly featured at the Huffington Post and received 245 comments before comments were closed. See some of the interesting discussion at the Huff Post.

Popularity: 9% [?]

Seeing Beauty Through Our Pain

Kristina Schwende

I have not blogged for a while as I’m going through a very bad flareup. I have spent most of the past two weeks on the couch or in bed with an ice pack on my face. Today the sun was shining and I forced myself to go for a walk. I brought my iPhone with me as I love listening to Joyce Meyer when I’m out and about. I did my long walk very s-l-o-w-l-y. This allowed me the time to really look at the beauty around me.

I moved to British Columbia back in the ’80s because of the incredible beauty of the region. I vowed that I would never take it for granted. However, being in pain can sometimes cause my world to become so small that I don’t see the beauty around me. So today I took the time to enjoy it and captured some of the images.

When was the last time you looked for the beauty around you?

Have you let your pain block it all out?

We must remind ourselves again and again that there is more to our life than our pain. We can still find moments to enjoy. Do you enjoy photography? If you are able, look around your house or your street. Find the beauty right outside your front door. Do you enjoy music? How about taking the time to really listen to it– how each instrument blends with the other to create a beautiful melody. Are you a computer geek like me? Seek out things that you truly enjoy, maybe start your own blog!

Enjoy the people around you. Let them help you or see how you can help them and others. That’s why I started my own support group. I wanted to take take the focus off myself and turn my pain into something good.

The point is, think of things that you are capable of doing, that you really enjoy, and do them! Don’t let your pain take over your life! Your pain does not define you! That is why I tell people I struggle with Complex Regional Pain Syndrome. It sounds so much better then “I suffer from. . .”

Struggles can be overcome; Suffering is a choice.

Do you believe that last statement?

Do you honestly believe that suffering is a choice? Have you ever seen two people deal with similar issues but one is smiling through it all and the other one is complaining constantly? I have a dear friend who struggles with multiple sclerosis. She is the most positive person I know. She has completely accepted her condition and lives her life with pure joy–because she chooses to!

I will be the first to admit that I have problems with this concept. There are times (like in the past couple of weeks) where I find it so hard to find the joy in my life. But then my husband says something hilarious and we giggle like little kids. Or I look at the people I have met because of my journey through pain–wonderful people I would not have met otherwise.

Yes, beauty can be found through our pain, but it is a choice. I pray that you choose to find the beauty in your life today.

About the Author: Kristina Schwende was diagnosed with Complex Regional Syndrome in 2008. Since then, she has run the course of multiple painful examinations, tests and scans of every kind, and two pain management clinics. Through all this she has learned that stress plays a major part in her pain levels. She is also learning how to set healthy boundaries and pacing her activities. She founded Chronic Pain Warriors, a Christian support group, and will be starting a book study on how to set boundaries in September. Kristina is passionate about bringing chronic pain to the forefront and wants to ensure that no one suffers through their pain alone.

Popularity: 6% [?]

Healing Words

Deanna Nichols

“The words of the reckless pierce like swords, but the tongue of the wise brings healing.” -Proverbs 12:18

Yesterday I had a great conversation with a health and fitness coach with whom I recently started working. Not only did she give me some great ideas to work toward my personal goals, but I also found myself leaving the conversation with a lot more hope than I’ve felt in a long time. It’s interesting I should be so hopeful because I’m really having a tough time physically right now. And we also spent a fair amount of time discussing my past history of chronic illness, a topic that usually drains me and makes me sad.

Instead, she was able to focus on the accomplishments I’ve made in the past two years toward a healthier me.

I later realized my coach did a simple yet powerful thing: she used her words to bring healing–healing to my spirit and even to my body. After we spoke I was more inspired to remain on the path of a healthy lifestyle, and I was so energized by hope that I went ahead and started my new exercise program that I’ve been putting off for months because I didn’t feel well enough to try. Which, in turn, inspired me to eat healthy and work out again today. And maybe I’m imagining things, but my current flaring health symptoms seem to be better too.

Recently I’ve had a lot of reckless words spoken into my life and my health situation. Well-meaning family members, friends, and doctors have said things that to some degree, robbed me of hope, faith, and joy. It’s been a fierce battle in my heart to fight off the constant barrage of negativity their words created. What a contrast with my experience yesterday!

This is a great lesson for all of us. Before we share that “helpful” idea or something “the Lord laid on our heart” that our loved one “needs” to hear, let’s ask ourselves if we are planting seeds of hope and healing or if we are truly piercing them with the sword of our reckless words.

“Set a guard over my mouth, O Lord; keep watch over the door of my lips.” (Psalm 141:3)

About the Author: Deanna Nichols is a woman of faith searching for purpose in the midst of a lifetime of physical illness and pain. She has been diagnosed with narcolepsy with cataplexy, polycystic ovarian disease, Hashimoto’s thyroid disease, and many others. Her chronic illnesses make it impossible for her to work or even drive, so she is mostly home-bound. She is on the Board of Directors for her family’s commercial lawn maintenance business, is an avid reader and book reviewer, and uses social networking to encourage people with chronic illness, educate those without illness, as well as to share what she’s learned regarding natural health. She lives in Northeast Florida with her husband of 12 years and their 5 furry children. Read Deanna’s blog A Fragile Faith.

Popularity: 5% [?]

5 Ways to Cope in a Crisis When Living With a Chronic Illness

Diana Lee

Taking a little time to come with ideas for how to handle a crisis is a valuable exercise for anyone living with a chronic, invisible illness. After all, to live with a chronic illness is to know that a crisis will come your way at some point. This list comprises the things I’ve learned about how to cope when life throws you a curve ball. As I’ve matured and had to learn how to deal with changes brought about by chronic illness, it has become easier and easier to cope with things I never thought I could handle.

(1) Breathe

By focusing on breathing I can keep myself in the moment and stop my brain from running wild with all the “what ifs.” It’s always the best place to start when something goes wrong.

 

(2) Focus on being rational and maintaining perspective

It’s in my nature to start flipping out during a crisis. It takes a concerted effort to keep myself thinking rationally. I do my best to keep reminding myself that I can handle whatever has been thrown my way and that freaking out does nothing but make me upset. The older I get the easier I find it to do this. I used to completely lose it and go into hysterical crying with any crisis. I still do that sometimes, but much less often.

(3) Lean on family and friends

In addition to my husband, parents, and closest friends, I’m part of a fantastic, close knit message board of women who provide the most amazing support both day-to-day and in a crisis. It’s like our own little Internet family. I don’t know what I would do without them. The online migraine and chronic illness community is an incredible source of support, too.

Discussing your situation with people who truly understand because they are living the same thing is amazing. Turning to other people also often helps me discover options and solutions I would never have thought of on my own.

 

(4) Ask for help

This is hard for me. I don’t like to need to ask for help. I want to be independent. But when push comes to shove sometimes it would be downright stupid to suffer silently when someone who loves you could do something to make things easier for you. Not everyone is lucky enough to have a supportive family or group of friends. Since I do, I should let them help me. They want to.

(5) Be kind to myself

I have a scary tendency to chastise myself for any part I think I might have had in bringing about a crisis. For instance, if I’d only tried harder I wouldn’t have lost my job. Never mind that I was dealing with three years of constant migraines when I quit working. It’s much easier to deal with a crisis if I can have compassion toward myself and remember that most crises are just a fluke rather than something I deserve for being a bad person.

In conclusion. . .

Coping with a crisis is and probably always will be hard. But with a better idea of what helps me push through I have more confidence in my ability to survive just about anything. You can do the same by coming up with an approach that suits your needs and tendencies before you need to cope with your next crisis.

About the Author: Diana Lee lives with chronic migraine disease, occipital neuralgia, diabetes, polycystic ovary syndrome and depression. She blogs about living with chronic pain, migraines and depression at her site, Somebody Heal Me, and interacts with other patients on Twitter, Facebook and Google+.

She is a licensed attorney, but is currently on disability because of the frequency and intensity of her chronic intractable migraines. She is married and mommy to two furbabies, Felix the cat and Maisy the Jack Russell Terrier. She loves reading, mindfulness meditation, watching college football and basketball, reality TV, laughing and being an advocate for other patients.

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“30 Things Meme” – 30 Things About My Chronic Illness

Last year hundreds of people participated in our “30 Things Meme.” We’d love to hear from you again (A new year may bring new answer, so even if you filled this out last year, we would love to see your answers this year, as well! ).

This is a great way to blog about your invisible illness too. We may say, “No one understands!” but have we really given them the chance to?

Copy the 30 things meme below, fill it out, post it on your blog or on Facebook, etc. and then let your friends and family know. You may even be surprised to find out who you know who is living silently with his or her own invisible illness.

And don’t forget to let us know about it! Fill out the form below (scroll down past the meme) with name of your blog and where the meme is posted so we can come read it!

Thank you for participating and spreading the word.

30 Things About My Invisible Illness You May Not Know – 30 Things Meme

1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
9. The hardest part about nights are:
10. Each day I take __ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me:
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:

Popularity: 21% [?]

Does Michaele Salahi’s admission of living with MS help or hinder awareness about invisible illness or multiple sclerosis?

I am thrilled to announce that I recently had this blog post, “Does Michaele Salahi’s admission of living with MS help or hinder awareness about invisible illness or multiple sclerosis?” ran over at the Huffington Post. Please be sure to visit and leave a comment to help us increase awareness of invisible illness issues.

Lisa Copen
Invisible Illness Week Founder

Related articles

• NOT WELL: Salahi reveals MS diagnosis (politico.com)
• Lisa Copen: Does “Housewife” Michaele Salahi’s Confession of MS Help or Hinder Illness Awareness Issues? (huffingtonpost.com)
• Michaele Salahi Has Multiple Sclerosis (thehollywoodgossip.com)

Popularity: 7% [?]

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