“You’re not alone. I have a pebble, too.” The Invisible Illness Experience

September 11, 2010 by  
Filed under Guest Bloggers & Articles

  • b04 “You’re not alone. I have a pebble, too.” The Invisible Illness Experience

Andrea shared the following in the Meme “30 Things About My Invisible Illness You May Not Know.”

rock heart “You’re not alone. I have a pebble, too.” The Invisible Illness ExperiencePeople would be surprised to know. . .
That on the days when you ask what I have done today and I reply glibly with “Oh, a little gardening, a little reading, a little knitting…” and you think how spoiled she is, how lazy… What I am not telling you is that those days are the ones filled with pain to the point where I cannot stand to move, to stand, to sit, or even to lie down. I go out in the garden and let the touch of the plants be a sort of meditation, grounding me to my surroundings and reminding me that I am but a tiny piece of the glory that is our universe. I read as an escape from my current reality of agony, and as a distraction, and as a pleasure in the midst of pain.

And when that escape is no longer working, I knit, to keep my hands from clawing at the ants buzzing around under my skin, and to keep my mind busy enough with knit three purl two that it won’t get lost in negativity.

I think people would also be surprised to know that pain doesn’t have to be an excruciating pain to have a profound effect on your life. If you want to know what it is like to be in my body, try this for a while. Add a pebble to your shoe. It isn’t much, really, just a little thing. An aggravation in your shoe. I saw a campaign on the web that suggests putting a clothespin on your finger and seeing how long you can stand it. At first, it is a minor pain. An annoyance, really. An irritation. An aggravation, perhaps, if you succumb to anger.

But after a while, the pain dominates your thinking if you let it. All you can think about is how long until I can take the pebble out of my shoe. You start trying to walk differently, trying to avoid the thing that causes pain, but then other parts of you start to ache because you aren’t using your body the way it is supposed to be used. So you go back to walking normally, pretending the pain doesn’t exist. You walk slower, but when that doesn’t work, you walk faster. You buy better shoes. You lean on a cane for a while. You take Tylenol, and Advil, but the pebble is still there. You try hopping. You try crawling. Still a pebble. Mind over matter, you tell yourself. Meditation. Breathing. Hypnosis. And a pebble, still in your shoe.

“You don’t have acute pain, you don’t need strong drugs,” the doctor tells you, and you can see him thinking don’t you know there are people who are in serious pain out there? Stop whining. “What’s the matter with you?” your boss asks, “Your mistakes are costing me money!” and you want to scream can’t you see the pebble? But of course no one else can see it. Most don’t even believe it is there, not all the time. It couldn’t possibly be. Those who do believe don’t understand why you don’t just take a Tylenol and make it go away, like they do with a headache. Pain is conquerable, after all. We have the technology, they say. Because the alternative is too scary to contemplate: What if the pain never goes away? What if I’ll always have a pebble?

When I see someone struggling with a pebble, I want to hug them and say “You’re not alone; I have a pebble, too.”

It won’t make their pain any less. But it will make it less frightening. Less lonely. Hopefully they will begin to see all the things they can do in spite of their pain, rather than all the things they have had to give up against their will. Hopefully they will see that, in spite of the pebble, they can still be the kind of person they want to be. That, even with a pebble, life is still good.

–Andrea at Kids by Hand

 “You’re not alone. I have a pebble, too.” The Invisible Illness Experience
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This is Where The “Healing” Begins

September 10, 2010 by  
Filed under Guest Bloggers & Articles

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Pam shares on her blog, The Journey Leads Home, “In preparation for Invisible Illness Awareness Month I thought that this video by Tenth Avenue North would be appropriate for the entries I will be making in the days ahead to bring awareness to those of us with an Invisible Illness.”

pam 100x100 This is Where The Healing Begins

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?” Visit her blog, “The Journey Leads Home.”

 This is Where The Healing Begins
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Chronically Connected – How The Chronically Ill Form Relationships Online

September 10, 2010 by  
Filed under Guest Bloggers & Articles

  • b04 Chronically Connected   How The Chronically Ill Form Relationships Online

By Jenny Pettit

woman typing2 Chronically Connected   How The Chronically Ill Form Relationships OnlineIt’s virtues are extolled: immediate access to information, improved work/life balance by working from home, and the ability to connect with others around the globe at a minimal cost.

It’s also accused of great evils: removing the need for face-to-face communication, facilitating white collar crime, and leading to the muscular atrophy of an entire generation. What else could have this affect but the World Wide Web!

While it’s true, the internet can and is used for the “wrong” reasons and with bad results, the same can be said of religion, airplanes, or freedom of the press. What’s the common link among these ideas and inventions? They ultimately become tools in the hands of human beings – well-intentioned but imperfect Mankind.

But just as religion gives billions of people a framework for life, airplanes deliver food and supplies to disaster zones, and free press led to the birth of our nation, the internet gives millions the resources we need to improve our lives in ways never before imagined. It would have taken our unplugged ancestors a generation or two (or more) to assemble – let alone process – the volumes of information we can now find and search in just a few seconds.

This access is wonderful, and a gift I make use of many times each day. However it is not, perhaps, the greatest gift the internet provides.

Humans are social creatures, hard-wired to need interaction with others – also known as a ‘community’. If you don’t believe me, go ahead and use that powerful internet search tool to read about otherwise healthy babies who die in understaffed orphanages for lack of touch or how solitary confinement causes psychophysical distress by denying human interaction. Or, check out this scholarly article about the science underlying this phenomenon.

audiience Chronically Connected   How The Chronically Ill Form Relationships OnlineWe seek to be both one of a million and one in a million; that is, we want to be simultaneously reassured we belong and that we are unique persons whom no one could replace. But we wouldn’t know if either goal were met without KNOWING and RELATING TO other people!

And so we join clubs then seek a leadership role, attend block parties and talk about our latest vacation, or play a team sport and dream of being named MVP. For the chronically ill, I’ve found that this mindset takes on a very specific form.

We want to find others with the same symptoms or diagnosis as ourselves, and upon making this connection we immediately begin spouting off our personal stories, complete with symptom progressions, medications, prognosis, and views on the future.

Knowing that I am one of a million (or, in my case with Sjogren’s, one of 4 million) Americans with my diagnosis is important to me. It means information may be available about how to cope with many of the problems I face, and that it’s been around long enough for there to be data for use in framing a prognosis.

Moreover, because I know other Sjogies exist, I am guaranteed to find people I can talk to who I know will understand what I mean when I try to describe weird symptoms or processes I go through, and if they understand that must mean I belong. At the same time, finding these people reaffirms that I am still one in (four) million – we may have the same diagnosis but none of us have exactly the same experience living with it.

There’s the obvious differences – severity of symptom progression, comorbid diagnoses, or age – and less obvious ones, e.g. personal stances on specific treatments or even reactions to the same medication.

women hug Chronically Connected   How The Chronically Ill Form Relationships OnlineTo my point, social networks or interactions are part of human nature, and take on a prime importance when people are faced with challenges. Chronically ill persons face the same challenges as the rest of society, but must also cope with their special challenges every day at the same time.

Therefore, it stands to reason that these people experience a greater need for – and find greater benefits in – social venues. And yet, social excursions often require people to do the very things that are problematic for this population. Mobility problems, unpredictible symptoms, extreme fatigue, and “brain fog” (or reduced ability to think logically) are just a few roadblocks.

When added to the plethora of ‘extras’ most of us carry (medications, comfort aides, water bottles, sweaters, joint-support paraphenalia, etc), it rarely becomes worth the effort. And to top it off, a lot of chronic illnesses and the methods used to treat them make the patient susceptible to contagious illnesses such as colds, flus, and infections. It’s a wonder we don’t all become hermits!

But, without these social connections, we are left very vulnerable in every way. Ill or not, we must have information, access to resources, and support. We all generally find a way to get to the doctor or pharmacy and meet our physical needs, but for years we simply couldn’t find a reasonable way to meet our emotional ones.

Which brings us full circle, to the World Wide Web. Now, we can find each other. Now, we can join groups and discussion boards that will fit into our schedules instead of disrupting them.

If I can’t sleep at midnight but crash out at 2 in the afternoon, I can post something at night and read someone’s response the next day without us needing to be present at the same time. Instead of being subject to the opinions and educational limitations of one doctor I find the energy to see, I can scour the web for more ideas and insight and take an active role in my care.

And even to my own surprise, I can develop REAL relationships with people I’ve never met (and probably never will). A woman undergoing chemo in Alabama is now just as important to me as people who live in my town. Another woman 3,000 miles away was the first to tell me when she found my group in a newsletter (that I don’t even receive and would never have seen on my own).

And, I hope, my stories and advice may be positively influencing someone out there who might never have even pursued treatment if they hadn’t heard that something could be done, or know that I care when the ‘real’ people in their lives turned their backs.

And so, to the many who are trying to unplug, I tip my hat and offer best wishes that they find the peace of mind connectivity may have stolen from them…and I turn, pick up my laptop and BlackBerry, and settle in to enjoy the gifts of being Chronically Connected.

jennifer Chronically Connected   How The Chronically Ill Form Relationships Online

When Jennifer Pettit was diagnosed at 15 and with symptoms that presented as young as two, she decided the only way to approach her new life was to embrace it. While in college at Villanova University pursuing a degree in Accounting and minor in Theology, Jen worked with the university to promote awareness of invisible illnesses among her peers and professors.

In founding the grassroots group “UII – Understanding Invisible Illnesses,” Jen seeks to promote awareness of chronic invisible illnesses as well as providing access to resources and support for both sufferers and those who suffer with them – friends and family. To connect with Jennifer and others visit her blog at www.myuiiblog.blogspot.com and/or http://groups.to/uii .

 Chronically Connected   How The Chronically Ill Form Relationships Online
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Should I Feel Guilty When I Have a Good Day?

September 8, 2010 by  
Filed under Guest Bloggers & Articles

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By Tiffany Christensen

woman wondering Should I Feel Guilty When I Have a Good Day?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?

tiffany Should I Feel Guilty When I Have a Good Day?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.

 Should I Feel Guilty When I Have a Good Day?
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“What do you do?” Explaining About Your Invisible Illness and Career or Lack of It (Or Do You Need to?)

September 7, 2010 by  
Filed under Guest Bloggers & Articles

  • b04 What do you do? Explaining About Your Invisible Illness and Career or Lack of It (Or Do You Need to?)

man stressed computer1 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.

work sign What do you do? Explaining About Your Invisible Illness and Career or Lack of It (Or Do You Need to?)-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.

woman stressed1 What do you do? Explaining About Your Invisible Illness and Career or Lack of It (Or Do You Need to?)-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 100x100 What do you do? Explaining About Your Invisible Illness and Career or Lack of It (Or Do You Need to?)

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

 What do you do? Explaining About Your Invisible Illness and Career or Lack of It (Or Do You Need to?)
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Associations, Foundations, and More!

September 6, 2010 by  
Filed under Associations & Foundations, Resources

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

September 6, 2010 by  
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  • b04 Mental Illness   The Invisible Illness We Dont Talk About As Easily

woman sad 3 Mental Illness   The Invisible Illness We Dont Talk About As EasilyWhen 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:

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 Mental Illness   The Invisible Illness We Dont Talk About As Easily

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 .

 Mental Illness   The Invisible Illness We Dont Talk About As Easily
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Have You Ever Considered Sometimes it is The Caregiver Who is Invisible?

September 6, 2010 by  
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  • b04 Have You Ever Considered Sometimes it is The Caregiver Who is Invisible?

caregiver wheelchair Have You Ever Considered Sometimes it is The Caregiver Who is Invisible?By: Cecil Murphey

When you see an elderly person coming toward you in a wheelchair, do you ever make eye contact with the person pushing the wheelchair? Who notices the caregiver? Do you give them a greeting, a smile of encouragement for their difficult days?

The almost invisible caregiver. (by Cecil Murphey)

Years ago, two of us stood talking outside a theater. A man pushed a wheelchair past us. Although we continued our conversation, both of us watched. He stopped next to a dark blue Honda, unlocked the passenger’s door, and helped the woman in the wheelchair stand up. Even from twenty feet away, it was obvious that her pain made it difficult for her to move. Once the man helped her inside, he folded the wheelchair, put it in the trunk, got in on his side and they drove off.

“Poor woman,” I said. “She must live in terrible pain.”

After the car drove away, my friend said, “I’ll bet you could describe the woman in the wheelchair, couldn’t you?” After I nodded, he said, “But I’ll also bet you don’t remember nearly as much about the man, do you?’

“Why, he was- “Then I realized I had hardly noticed him. He was just an older man.

Since the, I’ve realized that’s how many of us view such couples. The caregiver easily becomes a non-person. The sick one receives the attention and the concern.

From: My Parents, My Children, Spiritual Help for Caregivers by Cecil Murphey; Reprinted as a blog post form http://www.nursevirginiablog.com. Used with permission. Westminster John Knox Press, Louisville, Kentucky

 Have You Ever Considered Sometimes it is The Caregiver Who is Invisible?
  • b04 Have You Ever Considered Sometimes it is The Caregiver Who is Invisible?

Creating Pain Awareness Through Photography

September 5, 2010 by  
Filed under Guest Bloggers & Articles

  • b04 Creating Pain Awareness Through Photography

invisible project Creating Pain Awareness Through PhotographyWe received this information from the CT Pain Foundation and thought you may be interested!

Nearly seventy-five million Americans deal with pain. Chronic pain is an all-encompassing problem that knows no boundaries. It affects the poor and the rich, the young and the old, male and female. No race, class or age is spared from its debilitating hold.

In a sense, pain is the invisible disease. Pain is intangible, subjective and personal. Each person has a different level of tolerance and a personal way of defining pain’s intensity. As a result, many people with pain face judgment and ridicule. Pain leaves people feeling unheard, misunderstood and alone. It often goes untreated and underfunded.

CT Pain Foundation, a nonprofit, is dedicated to creating chronic pain awareness, empowering survivors and generating change. The INvisible Project is aimed at accomplishing all three.

September 30, 2010 in New York City
October 21, 2010 in Connecticut

The INvisible Project is a photojournalistic showcase of the day-to-day experiences of real people with chronic pain. To reflect the widespread effects of pain, a variety of conditions are represented, including cancer, complex regional pain syndrome (CRPS), Ehlers-Danlos syndrome, juvenile arthritis, multiple sclerosis, and fibromyalgia.

The goal is to make visible the experiences and strength that are often hidden behind the walls of hospitals and bedrooms. The INvisible Project will contrast the fragility of our physical bodies with the immense fortitude of spirit essential to living each and every day.

To raise awareness and funds, the photos and stories of the ten INvisible Project participants will be on display at the Times Square Intercontinental in New York City on September 30, 2010. As September is National Pain Awareness month, the INvisible Project is determined to spread awareness, create advocacy and ___ patient rights. The second event is scheduled October 21, 2010 at the Westport Play House in Westport, Connecticut.

One hundred percent of the proceeds will directly help those living with pain. To expand its programs and support groups, seventy percent of the raised proceeds will go to CT Pain Foundation. The remaining thirty percent will fund chronic pain research.

It is the mission of the INvisible Project to validate the suffering while highlighting the strength and courage of chronic pain survivors.

About CT Pain Foundation:
CT Pain Foundation is a 501(c)3, non-profit organization serving persons with pain, their families and care providers. Founded in 2006, CT Pain Foundation promotes healthy support groups and other positive, hands-on programs for those living with pain.

 Creating Pain Awareness Through Photography
  • b04 Creating Pain Awareness Through Photography

Press Release – Invisible Illness Week Team Offers Free Ebook of 263 Tips

September 1, 2010 by  
Filed under Ways to Help, What's New, How to Help

  • b04 Press Release   Invisible Illness Week Team Offers Free Ebook of 263 Tips

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Invisible Illness Week Team Offers Free Ebook of 263 Tips

ebook chronic illness Press Release   Invisible Illness Week Team Offers Free Ebook of 263 Tips20 Experts share their best tips about living with a chronic illness, from coping with illness and relationship tips to travel and homeschooling.

San Diego, CA — (SBWIRE) — 09/01/2010 — National Invisible Chronic Illness Awareness Week is September 13-19, 2010. A free 80-page ebook is now available for download to anyone who signs up for daily updates from the web site invisibleillnessweek.com .

“Chronic Illness Tips: 263 Ways To Do More Than Just Get By” is by Invisible Illness Week founder, Lisa Copen and friends. Friends include chronic illness career specialist Rosalind Joffe, relationship expert and best-selling author Pam Farrel, advocacy authority Jennifer Jaff, and illness advocate Jenni Prokopy.

Over 20 contributors share their best tips to live successfully with chronic illness on a variety of topic. “These experts are people who have the credentials,” says author Lisa Copen, “but more importantly, they have experienced illness themselves or health issues of someone close to them. Their tips come from the experience of living with the challenges illness gives us.” The chapters include coping tools, relationship issues, career, faith, and practical tips, from traveling with an illness to homeschooling. There are also many tips on how to encourage someone who lives with a chronic illness.

National Invisible Chronic Illness Awareness Week is an annual event that features a free virtual conference online 9/13-17 with speakers each morning 10:30 – 12 USA Pacific time. There are a variety of ways a person can get involved including blogging for the cause, completing the Meme “30 Things You May Not Know About My Invisible Illness”, or joining the campaign on Facebook.

With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses.

For more information see http://InvisibleIllnessWeek.com .

 Press Release   Invisible Illness Week Team Offers Free Ebook of 263 Tips
  • b04 Press Release   Invisible Illness Week Team Offers Free Ebook of 263 Tips

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