You are Too Young to Be That Sick! Chronic Illness & Young Adults

by Lisa Copen

At the age of twenty-four, a thousand miles away from my family, living in a new city, I was diagnosed with rheumatoid arthritis. Over a period of four weeks and about eight doctor’s visits, I finally found a physician who listened to me explain my symptoms and in less than two days I had a diagnosis.

Despite the terms “chronic” and “forever” I felt relieved to know the label that described my chronic pain. Few of my friends, however, shared my enthusiasm for a diagnosis. The managers at my office were more concerned about the fact that I wasn’t wearing heels to work anymore, making me look less professional.

“Encouragement” was quickly tossed around, like “You’re too young to feel so badly!” Rheumatoid arthritis was only something that could be related to the aches and pains their grandparents suffered from and a hot water bottle made it go away. They’d laugh and say, “You can’t have arthritis yet!” Those who attempted to sympathize, compared my weary body to a sports injury they had. “I have a touch of arthritis on my knee cap from football in college. It’s not fun when the rain comes, but you just have to keep pushing and not think about it.” Even well-intentioned words were enhanced by the brush off of a hand or even rolling eyes.

When you are faced with a chronic illness in your twenties, all of the typical decisions you should be making are quickly put on hold. Up until now, you were considering what kind of education to pursue, your career aspirations, relationships, and even where you will live. All these are put aside, however, as you are forced to make immediate decisions that impact the rest of your life.

Things like how well you accept (or do not) accept the diagnosis of your condition, which medications to try, when side effects are worth the risk and when they are not, and how to find the right physician. While friends are deciding which party to go to we’re at home trying to make sense out of our latest lab test results, weighing our options for alternative treatments, and deciding to have a good cry or just go to bed and hold back the tears one more night.

I tried to make each decision based on thorough research, a bit of instinct, and “worse case scenario” situations. So when I heard someone facetiously say, “You’re too young to have that illness” it felt like a slap in the face; as if they assumed I was too gullible to fight the doctor’s diagnosis and get “right one” that could be cured with a simple pill. I had to be incorrectly diagnosed, they assumed, because, after all, I “looked so good.”

Laurie Edwards, author of ‘Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties,’ says, “However infuriating and irrational such comments are, they only have the power to define or validate our conditions if we allow that to happen. There are all sorts of reasons why people find it easy to scorn or deny illness, especially in younger people who ‘should’ look and act healthy.”

The ambush of advertising for prescription medicines has given the general public a small education on the fact that illnesses like rheumatoid arthritis and fibromyalgia are legitimate diseases. However, with this education, comes the feeling that everyone is an expert and their assumptions about various diseases are now based on what one sees in those same commercials. For example, people with disabling illnesses can somehow be miraculously playing tennis or doing a marathon. While it’s true that a very small percentage of people may go into remission, or those just diagnosed may have favorable results, most of us are happy if we can get out of bed, get dressed and drive a car. These commercials neglect to inform people that though an illness can be controlled somewhat, the person may still be in significant daily pain.

With each chronic illness, most of which are invisible, people will doubt that your illnesses impacts your life as significantly as it does. If you are in your twenties or thirties, they will be even less likely to understand that feeling better requires much more than a good attitude or a little bit of exercise.

Lisa Copen is the founder of Rest Ministries and National Invisible Chronic illness Awareness Week, as well as the author of Why Can’t I Make People Understand? Chronic illness doesn’t have to be depressing! Subscribe to receive daily emailed encouragement from the largest Christian outreach for people with illness. Don’t miss Rest Ministries great books and gifts we’ve selected for people coping with illness.

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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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People With Invisible Illnesses – Look Out! We Are Everywhere

By Kerri Sweeris

Invisible. Shrouded. Hidden. Veiled. Unseeable.

Sometimes I wish I could wear my illness. Yes, I have a trach, but that could be from cancer, which most people assume is the case. Sometimes I wear an eye patch because of the double vision, but there again… could be an injury.

When I go out of the house, unless I am going to the hospital, I do my hair, put make up on, try to look presentable. Even if I don’t feel good. Even if I have to stop 23 times from putting my hair up because my arms give out. Why? I. Don’t. Know.

Pride I suppose? Just because I feel like crap doesn’t mean I have to look like crap?

So what would I wear if I could wear my illness? A sign that says, “I’m not drunk I have Myasthenia Gravis, that’s why my speech is slurred and I sound like I have marbles in my mouth, and I may walk unevenly.”

Another that says, “If I’m riding with you in a vehicle, please accelerate and break gently. Too hard and my head snaps back and forth because my neck muscles are too weak to hold my head up properly.”

Probably should have one that says, “I can’t breathe because my muscles are severely impaired by neuromuscular weakness, I’m not just out of shape. I also have an unfiltered hole in my neck, so you can imagine the yuck that lives in my lungs.”

And, “Please don’t make “Arrrr, matey” sounds when I have a patch over one eye. I have double vision, probably a severe headache from the double vision, and I’m exhausted. Unless I take the lead, I’m probably not in the mood for jokes.”

I would have a sign that says, “Don’t judge me for parking in handicapped just because I look okay now. When I’m done walking through this store, I may have to stop three times on the way to the parking lot.”

And of course a sign that says, “Please don’t say, ‘But you look so good!‘ For what? Someone with an invisible illness who struggles every day of their life to choose to live and fight instead of give up and die?”

We are out there. We are someone you know.

Ever wonder why the middle age man on the subway is always so grumpy? Maybe he’s in chronic pain.

Ever think that the young woman who “can’t control her child” on the train has an invisible illness that makes her so weak and tired it’s truly a miracle she and her child are even ON the train?

We are out there. We are sisters, daughters, wives, mothers, friends, aunts, grandchildren.

And we don’t want to be invisible anymore.

Kerri Sweeris is a 39-year-old mom to her miracle child, Jacob, who just turned four. She has been blessed with a God-fearing husband who has stuck by her side through the chronic illnesses of myasthenia gravis, fibromyalgia, diabetes, osteoporosis and depression (most of which were NOT diagnosed when they got married!). She trusts God for new strength to face each day. Visit her web site at Living with Chronic Illness

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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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Can One Person Make A Difference? The Story Behind The Notes

When Lisa Copen had 4 joints replaced in her left hand during the winter of 2009 she wore a scary looking outrigger splint for four months, 24 hours a day, that caught the attention of many people wherever she went. While some people awkwardly looked the other way, many approached her and started to share their stories.

Lisa quickly realized just how many people are inwardly suffering silently and then when they saw someone who they thought could relate with their pain, they opened up and were willing to share. Many conversations ended with a hug and sometimes a few tears. She had also talked with friends about how, when she saw someone with an invisible illness getting out of a car parked in a handicapped spot, part of her wanted to go over and just say “I understand” but she was afraid how they may respond. She discovered other people with invisible illness felt the same way!

Most people are not looking for large support groups or 100 percent understanding when it comes to living with a chronic illness. People in pain often times just want ONE person who really “gets it.” And that one person can make a world of difference.

As the founder of National Invisible Chronic Illness Awareness Week, which she began in 2002, she chose 2010 to be the year of “Each One Can Reach One.” Thousands of people around the world are participating by leaving encouraging sticky notes anywhere they think of, from bathroom mirrors and community bulletin boards, to inside of envelopes when they pay their bills.

With nearly 1 in 2 people in the USA living with a chronic condition such as diabetes, arthritis, cancer, or fibromyalgia, about 96% of illnesses are invisible. The hope of the people involved at National Invisible Chronic Illness Awareness Week is to remind people that although they may feel like they are alone in their pain, there are people who do care and understand the unspoken language of invisible illness.

It is easy to get involved. Grab a pen and some paper and share some encouragement in just a sentence! Add invisibleillness.com at the bottom so those who find the notes nowhere to discover more encouragement and get involved too!

National Invisible Chronic Illness Awareness Week is September 13-19, 2010. We hope you will join us in spreading hope to those who are hurting!

This event is sponsored by Rest Ministries, the largest Christian organization that specifically serves those with chronic illness, which Lisa founded in 1996.

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Living with DAILY Frustration of Chronic Illness

I have been going back and forth in my mind. . . I have this burning propensity to educate. I mean, yes, I went to school to teach, and yes, I will be home-schooling Jacob, but I want to educate people– on chronic illness. On invisible illness. Individuals, churches, organizations, etc. But I don’t know how to get started.

Doug and I were talking about this on the way to Ann Arbor yesterday. I was thinking of contacting area churches to see if I could speak to them about this…about how people with chronic illness feel, especially younger people. About how isolating it is,how frustrating and comdemning it can feel,how absolutely powerless you can feel.

But all those things I just listed come into play. . .  how can I schedule speaking engagements when I may be too weak to go? Doug summed it up: I need to find something with no dates or deadlines. The only thing that leaves is writing. Which I’m doing–I’m blogging, tweeting, e-mailing, and all the other e-things one can do with dial up. But it’s not enough somehow. I’m praying that God shows me what to do. How do I get “out there” without leaving home? How can I use my brain without my body’s cooperation?

I’ve never been a girl who liked limits, but MAN have I had to be a quick study. I know I have to take care of myself and my family before I go elsewhere. But I’ve been mistreated, misjudged, misunderstood SO many times that I want others to know what it’s really like. Part of taking care of myself is having a purpose.

I have to get crankin’ on my book. . . maybe that will be it.

It’s so difficult living with this constant frustration. I need to learn to be content where I am, yet I don’t think it’s wrong to strive to want more; to help more; to educate; I really dont’ believe most churches today know how to handle chronic illness. I have been BLESSED, BLESSED, BLESSED with many friends and helpful family members who help me frequently. Because of my illness and its varying degrees of severity, I do not attend church “regularly” right now, not for lack of want, believe me.

WITHOUT PLACING BLAME, there have been several churches that I have been involved with on many different levels that just don’t know what to do. But I’m realizing it’s not because they dont’ WANT to, it’s because they don’t know how, or don’t have the means. They will stand with you, help you for a while, but it seems that chronic illness always outlasts its contemporaries. If a church member who always visits moves away, the chronically ill remain. If the pastor gets called to another church, the sick stay. It’s not easy or fun or even desirous to ask for and need help. It’s frustrating. It can be humiliating. It can feel degrading. It can be embarassing. But the needs remain.

People are busy. Life is busy. It’s demanding. Everyone has a life. Even those with illness. How do you balance needing something but not being demanding or selfish? As a caregiver, how do you balance helping others while living your own life? A conundrum to be sure.

I am open to suggestions to what I can do to educate others, to what YOUR church has in place for those who are chronically ill.

To those who are caregivers, to those who volunteer, who help, who listen, who grieve with, who hold the hand of, who sit with the chronically ill.

God Bless you. You are angels. You are Jesus with skin. You may NEVER realize the good you can do by just being there. Thank you.

Kerri Sweeris is a 38 year old mom to her miracle child, Jacob, who just turned three. She has been blessed with a God-fearing husband who has stuck by her side through the chronic illnesses of myasthenia gravis, fibromyalgia, diabetes, osteoporosis and depression (most of which were NOT diagnosed when they got married!). She trusts God for new strength to face each day. Visit her web site at Living with Chronic Illness

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How to Give an Ill Friend Love, Understanding, and Support

I have lost many friends since developing Fibromyalgia. I don’t know why they have chosen to abandon me in my time of need, because they did not tell me. I can only assume it was because being a friend to a chronically ill person is difficult. But it doesn’t have to be! I don’t ask for much; just your love, understanding, and support.

It’s ok to ask me how I’m doing. However, I’m not going to lie and say I feel “fine” just to make you feel better. I’m not fine. I don’t feel fine. I’m not doing fine. I hurt everywhere, I can’t sleep, and it depresses me. But it’s still ok to ask me, because it shows me that you care.

Please, please don’t ask me if I’m getting better. Once I figure out how to manage my pain and other symptoms, the entire world will be the second to know. Until then, everything changes from day to day, minute to minute, even second to second. It’s all about learning how to manage the pain and other symptoms when outside stressors, the weather, and sometimes nothing at all can change where it hurts, how it hurts, and how much it hurts.

I beg of you not to tell me that I need to exercise more or to just “walk it off.” I do what I can – light stretching, moving around, and now even water aerobics. It’s excruciatingly painful. Unless you can feel my pain and understand exactly how my body reacts to every movement, unless you have Fibromyalgia as well as the myriad of spinal conditions from which I suffer, unless you are me, you have no idea what will make me feel better. My son does the best he can in this area, but he doesn’t tell me what I should do to feel better. He asks if there is anything that will help – “Will a bath help?” “Will an ice pack help?” “Will your heating pad help?” “Will your TENS unit help?”

I’m not asking for your pity. I’m asking for your understanding and compassion. If you really want to help me, just talk to me, make me laugh, focus on my abilities instead of my disabilities. If I need to vent, just listen (and it helps to validate my ventings). There is no right thing to say. In fact, more often than not there is nothing that can be said to make things right, make me feel better physically, or change my life or perspective. But one happy or funny moment could change my day. However, saying nothing at all, not even trying, can hurt me deeply. I am, after all, human.

If I’m crying, it’s still okay to talk to me. I don’t cry (much) from the pain. I mostly cry because I’m stressed out, exhausted, overwhelmed, angry, feeling emotional, or just plain frustrated. Sometimes it’s just one remark that sends me over the edge. At any rate, I cannot control this any more than I can control the weather. Again, I only ask for your understanding and compassion.

In short, don’t avoid me because you don’t want to deal with my issues. I won’t force them on you and, for the most part, won’t even mention them until you ask. Unless you’re my Momma. I seem to unload all my pain and symptoms onto my Momma because she’ll actually listen to me and not judge.

Which brings me to my final rant: don’t judge me. I don’t have control over my symptoms, which includes my inability to remember what I need to do as well as function as a normal person.

Keep in mind that Fibromyalgia it is incurable. And ask anybody who suffers from FMS and they will tell you that it is, for the most part, resistant to medications. If I had to list the number of medications I have to take in order to function (and I use that term lightly), you would be shocked. But, please, don’t tell me that I take too much medication. I have ONE doctor prescribing this medication to me, we review my prescriptions every time I see him, and, as he spent years in medical school to become a doctor, I trust his opinion. Leave my medications to him, as he knows what he’s doing and has my best interests at heart.

I can understand that maybe some feel FMS is not such a big deal. After all, it’s not cancer. It’s not heart disease. So, it’s not considered fatal by those standards. However, there are people who suffer from FMS who consider suicide as their only option for relief. Dr. Jack Kavorkian assisted suicide in Fibromyalgia patients. People who suffer from Fibromyalgia feel helpless, hopeless, and unable to obtain any relief from pain and the myriad of other debilitating symptoms associated with FMS (which stands for FibroMyalgia Syndrome). So, it is not life-threatening by the classic definition, but don’t say this to fibro sufferers. This is not a harmless disease.

While people who do not suffer from Fibromyalgia, Chronic Fatigue Syndrome, scoliosis, or any other invisible chronic illness may have a lot of advice for those of who do, we ask that you, unless you are a doctor or pain management specialist in the treatment of these diseases and disorders, please keep it to yourself. We are doing the best we can to manage with what we are given. We don’t want your advice; we don’t want your pity. We want your love, your understanding, your company, and your support.

National Invisible Chronic Illness Awareness Week is essential to help those who do not suffer to understand; and crucial to those who do suffer to find camaraderie.

Jessica Barto has suffered from symptoms of FMS and CFS since she was a teenager. Was diagnosed with Spondylolisthesis in 1993, and FMS in 2007. She invites you to visit her blog, Fibro Blog.

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Invisible Illness Week Features Virtual Conference and Fresh Awareness

CONTACT: Ms. Lisa Copen, founder & director
858-486-4685
www.invisibleillness.com

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Invisible Illness Week Features Virtual Conference and Fresh Awareness

Did you know that nearly 1 in 2 people in the USA have a chronic illness?* And despite assumptions that most illnesses are a mild inconvenience, if you ask those who live with a disease or chronic pain, you will find it drastically changes their lives. An invisible illness can be a disease that is nearly always unseen like chronic fatigue syndrome (CFIDS) or heart disease to one that progresses from invisible to visible, such as multiple sclerosis or rheumatoid arthritis. One thing is certain: those with chronic illness desire to connect with one another and live life to the fullest. . . but they may not be able to travel and sit through a typical conference.

This is where National Invisible Chronic Illness Awareness Week, September 14-20, 2009 excels, offering a 5-day virtual conference, where all speakers are available to listen to LIVE or later (all session are archived.) Monday through Friday, 9/14-9/18, anyone can log on to www.invisibleillnessweek.com and hear illness experts 4 times a day and even call in with their questions after the presentations. Last year’s shows have had over 12,000 listeners and are also available on iTunes.

There are a wide variety of topics including:
• Finding Health Insurance Coverage with a Pre-existing Condition
• Coping with Chronic Illness in Your Marriage
• Having Your Own Business When You Are Chronically Ill
• Simplifying Your Home and Housework
• Parenting When You are Chronically Ill – Chaos and Confessions

The theme this year is “A Little Help Gives a Lot of Hope.” Thousands of people have joined the cause through social media tools like blogging for the cause, a blog tour, a Facebook Cause and fan page, and Twittering about the event with the hashtag #iiwk09.

Lisa Copen, 40, is the founder of National Invisible Chronic Illness Awareness Week and has lived with rheumatoid arthritis and fibromyalgia for sixteen years since the age of 24.

“We all live with a variety of symptoms and the severity of the pain often changes or moves from one area to another on a daily basis,” says Copen. “But there is an underlying feeling that those we love the most don’t fully comprehend what we cope with minute to minute or the choices we make just to ‘have a life’. This can be more devastating to some than the actual physical pain.”

Copen, who was the recipient of the Audience Choice Our Bodies Ourselves Women’s Health Hero Award this spring says, “We hope to unite some of the millions of people who live with chronic pain and illness silently by offering an oasis of hope and understanding. Illness is never fun, but we hope to connect people to encourage one another, as well as host some fabulous workshops to help people live their best life possible.”

For details visit the web site, http://www.invisibleillnessweek.com

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*Source: Chronic Care in America: A 21st Century Challenge Revised

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Dear World

Dear World,

I find myself so frustrated sometimes. I feel that others expect – or occasionally demand – more of me than I am able to do. It is in many ways my fault. I do not offer explanations or, when I do, they are often incomplete. I’ve always tried to ignore “You can’t be sick, you look fine” because it can be very hurtful. I’ve believed that anyone who thought that didn’t want to understand. But how can they, if I don’t explain?

I don’t want to bother anyone and I tend to ask for help only as a last resort. Someone recently told me that every time I deny someone the opportunity to help me, I deny them the opportunity to receive blessings.

My goal in writing this is part self-advocacy and part education. At least one of the medical conditions I have most people have never heard of.

Sjögren’s Syndrome is an auto-immune disease (I call it my body is trying to eat itself) that primarily effects the moisture producing glands in the body. Aww heck, I was going to try to explain it in my own words but the Sjögren’s Syndrome Foundation does a much better job than I ever could. I shall quote from their web site http://www.sjogrens.org:

Sjögren’s syndrome is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands…

Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma.”

Symptoms can be mild or severe; they may effect only the eyes and mouth or may be systemic; they may remain stable over time or worsen. I’ve been to two patient conferences on Sjögren’s so far and I have yet to meet any two people who experienced it in the same way. Part of that is because even in cases of primary Sjögren’s, it rarely seems to appear alone.

In my case, I also have fibromyalgia which more people are probably familiar with although it is as much an invisible illness as Sjogen’s is.

From WebMD:

Fibromyalgia syndrome affects the muscles and soft tissue. Fibromyalgia symptoms include chronic pain in the muscles, fatigue, sleep problems, and painful tender points or trigger points at certain parts of the body.”

Finally, I also have degenerative disk disease. I won’t be quoting for this one. I have scoliosis. When it got bad enough, they sliced me open and hooked rods to my spine to straighten it out. My spine proved to be as stubborn as I am and retaliated by curving the other way (kyphosis). It was severe enough to warrant correction; alternately I could do nothing and deal with pain from wedge shaped vertebrae later.

I didn’t know then what I know now, so I chose to correct it. I also couldn’t have predicted the accident three months after the surgery that fractured the last vertebrae in the fusion and ripped the hooks out. They used screws to reattach the rods, shoved me in a brace, and life was good.

What I know now that I didn’t know then: The fusion includes all but the lowest two vertebrae in my spine. These lucky vertebrae absorb all of my motions with no help from any of the others up until somewhere between my shoulder blades (T-6 for those that might mean something to). They are tired and worn out and not afraid to tell me about it.

That’s it for definitions. But I still need to translate all that into what it means for me.

My back (degenerative disk disease is too much of a mouthful and with henceforth not be used) is something I’ve been dealing with for a long time. I can’t stand for very long, I can’t walk very far, I can’t sit for very long. When I do sit, I really need something to lean against and some way to take my feet off the ground.

I don’t understand the exact mechanics of why those things help other than it takes pressure off places that get really irritated. Sometimes my back hurts a little, sometimes it hurts a lot, rarely it hurts not at all. Every once in a while, when it’s in a really bad mood over something, the muscles start spasming. On occasion when this happens I have been known to fall down.

Although I don’t know exactly what causes it to happen because it happens so fast, I do know that when it happens, I can’t stand myself back up. “I’ve fallen and can’t get up” is alive and well. Thankfully, that happens very, very rarely.

There are things I may be able to do to help with my back in general but they have to wait. I have more pressing concerns.

I miss the days when that was all I had to worry about although I didn’t appreciate them at the time.

Sjögren’s and fibromyalgia added a lot of new fun elements to my life.

• They are not curable.
• Doctors can only treat the symptoms. Figuring out what is causing a new symptom tends to be very frustrating for me and my doctors but knowing if there is an actual treatable cause is important.
• Some symptoms are obviously
• one or the other but some could be either. This complicates diagnosis and treatment exponentially.
  They both cause fatigue
• They both can cause widespread pain.
• Carpal tunnel syndrome has recently been added to my ever growing lists of diagnoses, but I’m in denial about it.

When I was first diagnosed, I was falling asleep every time I stopped moving. It turned out that was because my B12 levels were almost non-existent. I don’t understand how auto-immune diseases effect vitamin levels and cause that to happen. Many B12 shots later, it’s fine and my Vitamin D level has tanked.

Until that is back to normal and stabilized, there is no way to assess if my current medication levels are adequate. There is also no way to determine if what appears to be new symptoms are actually symptoms or manifestations of the deficiency.

Compared to where I was when I was first diagnosed, I am light years better.
I used to hermit because I didn’t have the energy to talk to people. Now I cave maybe 45% of the time.

• My brain doesn’t get up and walk out anymore as long as I keep stress to a dull roar.
• Everything still takes me ages longer than it should, but I do a lot more.
• I know the price I will pay if I do too much and I can usually identify “too much.”
• I have good days and bad days but as long as I don’t do “too much,” most of my days are average.
• You will probably never see me on a bad day.
• I am often tired but I’m happy that I can stop moving without falling asleep.
• I used to hate having to drive anywhere and refuse to get on the freeway because I was an absolute menace. I couldn’t concentrate well enough. I’m probably still a menace but, if I am, I don’t know it.
• I do not admit to pain if I can in any way avoid it.
• I do not know if I will ever be “better” but I will not give up trying. I can only do so much, though. If I don’t have the energy, I don’t have the energy. I will drive if I am tired – within limits. Some places are not always too far but can be when I am not feeling well. Not feeling well has many definitions and extremes. Some days making it out of bed is a victory and all I can ask of myself. Other days, I feel so great that it is hard to remember that I need to keep my activity to a dull roar.

So when you ask me to do something .. please remember .. if I’ve tried and stopped trying, there’s probably a reason. If I haven’t tried yet and it is something that won’t cause me physical harm, I’m usually willing to. If I tell you that I’m doing the best I can, then I believe I am. Maybe I can do better, maybe there is something I haven’t thought of yet. Maybe you have a suggestion that will help me. I’m willing to try.

But.

I put enough pressure on myself for three people. My stress level is typically at least at a simmer if not a slow boil because I still expect myself to be who I was even though I know I can’t be. I’m still learning. Your expectations (and, rarely, demand-feeling-things) only make things worse when I cannot live up to them. Stress is bad for both fibro and sjogren’s. It hurts. It’s exhausting. I get less done in more time which makes more stress and so on and so forth until it knocks me on my butt.

I am more likely to meet expectations – yours and mine – when everyone, including me, stops trying to pressure me.

I hope I made sense. I hope I explained. If you have any questions, please ask me. I will do my best to answer.

National Invisible Chronic Illness Awareness WeeK an important way for us to share information. The more we know, the more we continue to learn, the better we’re able to cope with these illnesses and understand each other as people.

Fiona is just a person who happens to have Sjogren’s Syndrome, Fibromyalgia, and Degenerative Disk Disease. She’s learning that she can’t pretend to be Superwoman anymore, much less actually be her. It is a hard lesson to learn, and even harder sometimes to explain – but sharing information is so vital.

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The Importance of a Good Support System

If you live with fibromyalgia, neuropathy, CFS, MPS, or another “invisible pain illness” there is no doubt you may come across naysayers, negative Nancy’s, friends and family who in the least don’t understand what you are going through, in the worst… don’t believe you.

Let’s face the truth, it’s easier to empathize with illnesses you can see or even are more prevalent, like cancer, heart attack, or stroke. The web site www.fibrohugs.com has an excellent “letter to normals” that I believe should be a must read for everyone, especially those who deal with fibromites in their family, friends, and even coworkers.

When I worked for a certain, now bought out, aircraft parts manufacturer, in sales, I sold 1 million dollars a year more than the next closest sales rep. But, all my boss could see was I had more sick days than anyone else. My last job was at the Disney Reservation center where I had an excellent, extremely understanding boss (he had gout so he sympathized!) who knew how hard it was for me to leave my job there, I loved it so.

So, if you don’t have support at home, work, or in your circle, what should you do? An excellent question.

I found an amazing support group online. Soulten’s fibro support is my favorite. This group of people are not only my online support group. They are my online family. Most of these people I met in the fibromyalgia chat room on www.prohealth.com. They do not all have fibro, some have depression, are bipolar, or have neuropathy like me. They are from all over the world, and I don’t think I would have made it through the past year without having their support.

One of the hardest things I had to learn was to kick the negative Nancy’s to the curb. I cleaned house of the people who refused to believe my illness is not “all in my head”. As hard as cleaing my life of these people were, and in some cases they were really long term friendships, I had to. No one should have to prove they are ill. You wouldn’t ask a cancer patient to see their chemo treatment for proof would you?

I want to thank my support system. I have the most amazing husband who works 50-60 hours a week, takes care of me and our home too. Sweetie, you are my rock and I love you. To my best friends who I am realizing worry way too much about me and are always there to lend help, even from an hour away! And, lastly to my friend, neighbor, and sister Nan.

Some days I don’t know what I’d do without you. You will never know how much the simple act of unloading and reloading my dishwasher means to me… and for that and all the other things you do for me (including picking up my prescriptions in the pouring rain) I love you (and u are NOT a negative Nancy!).

Michele Kellenbenz is a fibromyaliga and neuropathy fighter. Michele blogs her struggle, accomplishments, and tricks for fighting the good fight against these invisible illnesses. Her hope is through her blog others will learn from her mistakes and not end up in the same situation. She is currently working on her first appeal for disability. When her hands are cooperative she also likes to work on transforming recipes from sugar to splenda, and makes gorgeous beaded jewelry. You will find Michele’s blog at http://ramblingsofinsanemind.blogspot.com. Also, make sure you follow her at http://twitter.com/chelekell.

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