Reflections on Invisible Illness Awareness Week

Invisible Illness Awareness Week is nearly over. I am sitting at the computer reading through some of the many the blogs, articles, comments and more that people have been posting on their experiences facing a world who does not understand their pain.

Wow.

Truly. . . wow.

You have been refreshingly honest, yet hopeful.
You have shared your pain, but kept it in perspective.
You have shared your hurt feelings, but without bitterness.

I am in awe of all of you who have shared your hearts. . . and your hopes.

Here are a few of the things that I have read that touched me deeply.

• I get so depressed when people just don’t get why I don’t or can’t do things they are so unaware of the pain and exhaustion. So, I just have been trying to get the message out there [about Invisible Illness Awareness Week]!
• Between work, pain, fatigue and friends I’ve become rather isolated because of it all. But taking it just one day at a time.
• I have to take so many medicines, and I am so just so tired of the whole thing – that is until I read this article. After I wiped away the tears, I began to realize that I have to start to really ‘live’ with the fact that I will have to take some of the medications for the rest of my life – and that’s ok.
• I attempted suicide in 2004 because the burden of pain and emotional distress was too much for me to continue battling. It was an eye-opening experience where I learned that I had to live for my three children. They were the reason that I decided to call my husband and tell him what I had done. And it’s still because of them that I continue to push through day after day of pain. God spoke to me that night and said to me, “You have three babies downstairs.” That voice was so loud and clear and distinctly not mine. I knew it was Him telling me to live for them. So I did.

You may not be surprised about the pain that people feel, but I also hear so much hope.

You have shared things like. . .

• So I’m here to encourage all of you to live. There can be joyous moments in between the pain.
• 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
• 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.
• I shared the hurt I felt and explained how I did not want to feel pitied or be a burden. My family and friends reached out and I opened my heart and let them in. Something happened, something magical that brought us each closer to one another.

It is so easy for illness to cut the confidence, attack our personality, and end relationships. Each of you have said in some way, “I can accept this illness without allowing it to define me.”

This year’s theme has been “Deep Breath, Start Fresh,” and throughout the posts and the comments, you have put this theme into eloquent words that express this in beautiful ways.

My deepest thanks for all the ways you have helped those with invisible chronic illnesses and hidden pain this week. You have stepped forward, crossed the comfort zone, and shared your heart and your hope and you have made a significance difference.

Lisa Copen is the founder of Rest Ministries and she lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? at the Rest Ministries shop.

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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.

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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.

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What Does it Mean to Accept Your Chronic Illness Diagnosis

Lana Barhum

Acceptance is one the toughest things that anyone of us has to do. Whether we are accepting the loss of loved one, moving to new town because of a job transfer, getting divorced, or accepting that we have to live with sickness and pain, acceptance isn’t easy. With chronic illness, the sooner you accept your diagnosis, the sooner you can work on being healthy.

I know that this really does make much sense but from experience, I know that it is a process and it takes time and trial and error to learn to how to best live with chronic illness.

 

My diagnosis

When I received my rheumatoid arthritis (RA) diagnosis, I promised myself that RA would not win and I remember the feelings of fear, denial, numbness and skepticism. My emotions changed from day to day and even several times a day. Feeling hopeful or optimistic were a long ways down the road and acceptance–well, that was something I never thought would happen.

In the beginning, I promised myself that RA wouldn’t win but all that happened was that I became depressed even though I insisted to everyone in my life that I wasn’t. The only thing that kept me going was that I knew that my children needed me to be their mother and chronic illness didn’t change that. My new RA diagnosis felt like a death sentence and the information on the internet make me feel that the disease would disable and disfigure me in five years’ time and end my life in ten years. A few months after my rheumatoid arthritis diagnosis, I was also diagnosed with fibromyalgia syndrome (FMS) and the blurry reality of what was my life started to become clearer.

I had spent ten years trying to find answers and one day I had them. What I realized at that point was that I had the power to heal because I had already started to find out how by searching for and finding answers.

As a result, I started to educate myself and arm myself with information about rheumatoid arthritis and fibromyalgia that made sense. I sought support from others who were living with the disease and I knew that if I wanted to get better, I had to accept that a handful of pills weren’t enough.

Looking beyond the physical symptoms

I also looked at my life as lesson after lesson of patience, strength and survival. Having RA and FMS were the same as any other struggle that I faced in my life and they would probably be easier than some of those struggles. When I looked at my diagnoses as just another thing that made me who I was, I learned to accept that I had no control of what happened but I had control of the response as I had when other obstacles impeded my life.

The person that I was at that point in time was already prepared for RA and FMS and while it wasn’t easy or clear at first, I accepted RA and FMS in my life not because I wanted but because I had to.

Of course, it wasn’t easy to get to that point because living with an invisible condition (or two or three or more) isn’t that simple. And steroids, a lack of energy, physical pain, and weight gain can take a toll on you and blur your perceptive.

You lose a lot of friends and there are a lot of people who don’t understand but what the illness doesn’t control is how we respond, how we fight back and how we go on the defense against the war waging inside our bodies. The disease doesn’t get easy but we start to realize how exceptional we are to be able to overcome so much.

Why you should accept your chronic illness diagnosis

One you are diagnosed with any disease, invisible condition, and/or chronic illness, it will always be a part of your life and the sooner that you accept your diagnosis, the sooner you can learn how to live with your disease. It is also how you will cope and how you will learn to understand that your diagnosis isn’t a death sentence. The only thing that your diagnosis has to be is something you have to live with and once you accept it, you can learn how exactly you will do that.

Chronic illness is kind of like life with its all ups and downs but living with an invisible chronic disease is like life multiplied and so very complicated. It is never ending roller coaster of pain and emotions.

There is also about a lack of understanding amongst your family, your friends, your coworkers, and even complete strangers. It is about living life without knowing what tomorrow will bring and it is an emotional battle on a daily basis. Moreover, it is a bitter pill to swallow and unless you accept all these things, you will never be able to get past your diagnosis.

How you accept chronic illness in your life

In order to accept chronic illness, take a look at the advice you have received–pace yourself, manage your condition well, educate yourself, advocate for yourself, surround yourself with emotional support and don’t let the disease define you. This advice is your guide through the roller coaster of symptoms and emotional setbacks. The only thing that can prepare you for that next flare-up is experience.

There will be days where your pain and fatigue are under control. There will be days when you feel productive and that you are in control of your life and your body again. It will not feel like a death sentence forever. On the other hand, there will be days that it will feel like the disease is in control when you are in pain, you are tired and you can’t focus or get anything done. The disease doesn’t get easier but getting through those really bad days does get easier.

Make conscious decisions

As a long time sufferer, I have learned that there can be more good days by making good choices. You have to do all the right things like eating right, taking your medications, being active on good days, and resting on bad ones. It is a learning process like anything else in your life and the setbacks–they are part of life too. You can’t control the setbacks regardless of how well you plan and a flare-up can come on at the worst possible time.

All you can do is wait to feel better and you can’t always predict how many good days you will have so try not to overwork yourself because you don’t know when your next good day will be.

Accept that it’s not all in your control

Understand and remind yourself that a chronic illness is unpredictable. There is not much that you can do except to realize you have to adjust and adapt to the moments that the disease brings havoc to your life. While it doesn’t define you as a person, it can still define your life.

The best thing you can do for yourself is to accept that you have to be flexible to live successfully with your chronic invisible disease. The disease might be your new reality but learning to be flexible means that you accept chronic illness in your life not that you give up. Your life will never go back to “before your diagnosis,” but it can get close to it if you open your mind to what you need to do to get to that point where you can accept diagnosis in a way that means you don’t give up.

About the Author: Lana Barhum is an advocate for two online support groups, one for arthritis and the other for fibromyalgia. She was diagnosed three years ago with rheumatoid arthritis and fibromyalgia. She also works in the legal field and is a mother two very active boys. She has a blog titled: “Living Life As I See Fit” where she writes about living life with chronic illness.

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Discovering A New Normal

By Keri Delphia

With Invisible Illness Week right around the corner it has had me thinking what my life is like living with an invisible illness. For me it has been trying to say the least.

I, like so many others who I have talked to, was a perfectly healthy, full-of-energy, lots-of-stamina, wife, mother, and business woman– until one day all of that changed.

When I say “one day” it seemed as though one day I was fine the next my whole world was changed. Not only did it change my life, but it changed my whole family’s life. The wife and mother they knew who coudl– and would–do anything they needed, was now too tired, in too much pain, or mentally couldn’t remember small details that were so important to them.

Here we are six years later and I sit here trying to make this make sense with as few words as I can I can say: I have the utmost certainty that God’s Grace, Mercy and Love, has walked our family through this Journey. It has not been easy. Lot’s of doctors’ appointment, lots of disappointment in trying to find answers. And trying to learn a new normal in our lives.

I think the hardest thing for me was admitting there was something wrong with me and listening to my body; Not worrying about what people were thinking about me.

When you look normal on the outside, meaning you show no outward signs of being sick, you know that people have a hard time understanding or having sympathy to your illness. This is something that I know first hand. I was one of those people.

That I know is one of the things that God wanted me to learn through my own illness.

My family has learned a new normal. We all understand that it may have to be adjusted day by day, but communication and honesty about how I feel is a huge key it keeping a peace around our house! No matter what God is with me always and with Him I can do all things! Maybe not the way I used to, but by His grace I find a new way!

Keri Delphia is a very social person who loves to be around people. She began her career as a hairstylist in 1987 and was passionate about it until she was no longer able to do it in 2007. Now she manages a hair salon part time and enjoys sharing her knowledge with the stylists that are just starting their careers. She has been married for 16 years and has two boys 19 and 9! They are a true joy in her life! She also has 12 chickens and 1 Rooster–quite a hoot and she loves the fresh eggs. She lives with Thalamic Pain Syndrome and has been suffering for 5 years now, but it has just been recently that she was diagnosed. Visit her blog, Pain Free Journey for more writings such as this.

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“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.”

People 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

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Invisible Illness Week Joins American Pain Foundation to Endorse the Virtual March on Washington

September is Pain Awareness Month. Pain affects more Americans than diabetes, heart disease and cancer combined, and is a leading cause of disability in the United States. Yet, it remains woefully undertreated and misunderstood, resulting in needless suffering .

This September, the National Invisible Chronic Illness Awareness Week campaign is joining with the American Pain Foundation to endorse the Virtual March on Washington to raise awareness about the barriers to accessing appropriate and effective pain management and the desperate need to improve pain care for all Americans.

Go to www.painfoundation.org/virtualmarch to participate in the march.

Opportunities to engage include:  writing your legislator, watching condition specific videos, chatting with others affected by pain and adding your voice to the 10,000 Voices campaign. You can also use resources in the PAM Advocacy Toolkit to host an event in your local community or get tips and templates for writing a letter to the editor. Go to www.APFActionNetwork.org to see how. Tell YOUR story. Join us to create change!

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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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“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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Facebook Brings Those With Chronic Illness Together for Invisible Illness Week

One of the fastest growing ways for people to share the things they care about, including how health and illness issues impact their daily living, is through social media networks such as Facebook. Invisible Illness Week provides opportunities to connect with others to gain mutual support.

San Diego, CA — (SBWIRE) — 08/24/2010 –

National Invisible Chronic Illness Awareness Week is September 13-19, 2010 and so far thousands of participants are showing their support through the social network, Facebook, the second largest site on the internet according to Alexa.com.

Lisa Copen, founder of National Invisible Chronic Illness Awareness Week, which she established in 2002, says, “In 2009 our nonprofit organization included Facebook for the first time in our awareness campaign and the results had a significant impact we could not have imagined.”

Copen explains that when people who live with chronic invisible illness join an Invisible Illness Week group, a “Cause” or “Like” a page, it is a non-intrusive way of saying, “This is something that personally affects my life and that I care about.”

According to Copen, before social media, many people expressed that it was uncomfortable to email their friends or family illness-awareness related materials without creating feelings of being pushy or critical of their responses to illness. Now, by joining a cause on Facebook and inviting friends to join, it is much simpler to create awareness about daily life with invisible chronic pain.

It is particularly enlightening when someone with an illness invites friends to join the Invisible Illness Week Cause, and discovers how many friends are also suffering silently from conditions such as chronic migraines or fibromyalgia. “Sometimes those of us with illness forget that we may have loved ones who are also silently coping with invisible chronic conditions,” says Copen.

Approximately 7000 thousand people are a part of Invisible Illness Week’s presence on Facebook and Copen says she would love to see this number continue to grow. “We have some amazing articles, guest bloggers, and seminars that will help people know they are not alone in their pain and how to deal with the daily part of it even better.”

With nearly 1 in 2 Americans coping with a chronic condition, they are not alone, but the invisibility factor can make it feel that way.

To join one of Invisible Illness Week’s Facebook groups, causes or more see http://InvisibleIllnessOnFacebook.com.
Media Relations Contact

Lisa Copen
Coordinator
National Invisible Chronic Illness Awareness Week
888-751-7378

http://www.invisibleillness.com

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