Featured Workshops Today: Communicating With Others

Communicating is a big deal when it comes to making some practical steps toward living with joy. We recommend the following workshops from past years.
“Helping Others Understand Your Pain” with Karen Lee Richards, a writer and patient advocate who works at HealthCentral and lives with fibromyalgia.

It’s OK to say NO: Building Healthy Boundaries” with Jenni Prokopy is a nice reminder that we are allowed to take care of ourselves. Jenni is the founder of chronicbabe.com and a journalist.

And “How You Can Help Those Who Help You” with author Jo Franz who lives with multiple sclerosis.

Times get tough when you are “Coping with Crises on Top of Chronic.” Join Jenni Saake (founder of Hannah’s Hope: Seeking God’s Heart in the Midst of Infertility, Miscarriage & Adoption Loss ) and Lisa Copen founder Rest Ministries, as we chat about surving crises in the midst of Chronic illness. Between the two of us, Lisa and Jenni have survived 45 years of multiple chronic illnesses including Chronic Fatigue Immunity Dysfunction Syndrome (ME/CFS), rheumatoid arthritis, fibromyalgia, diabetes, endometriosis, infertility, chemical sensitivities and more.

These women know that life doesn’t stop just because we are in pain. Hear us share our hearts and experiences through surgeries, infections, IV therapies, broken bones, unemployment, adoption journeys, and grief ranging from miscarriages to the deaths of grandparents. We will share a few survival skills for coping with the stress of everyday life when crisis hits.

This year instead of having a live virtual conference we are featuring some amazing workshops from past years. You can find them all here on Blog Talk Radio or, if you use itunes, enter “invisible illness” under “podcasts” and then download them to a music player to listen to anytime. >More instructions here

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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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“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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How to Be a Fabulous Friend to Those with Illness

Nearly 1 in 2 Americans (133 million) live with chronic illness and conditions such as arthritis, multiple sclerosis (MS), diabetes or lupus. Yet, most show no outward sign of their disability—or the sense of loss, loneliness, and discouragement they live with daily. Pain, fatigue, limited mobility, and other symptoms interfere with everyday activities, responsibilities, and relationships.

Well-meaning friends and family, not understanding the unique challenges of the chronically ill, don’t know what to say or do to help. Here’s how you can help those living with chronic illness:

• Release expectations and be flexible. For someone living with chronic illness, it is possible to feel well one day and sick the next, making last-minute cancellation of plans unavoidable. Expect unpredictability and extend grace.
• Spend time with the chronically ill when its convenient for them. Meet at a time of day when they feel best. Those living with chronic illness struggle with regular attendance at work church, and social gatherings. Pain and fatigue take their toll, leading to physical and emotional isolation. Take time to visit those living with chronic illness at their homes or invite them to lunch—at a time that works best for them. A short visit over coffee or tea can make a world of difference in the life of someone struggling with chronic pain.
• Send notes, cards, and small gifts in the mail. Books, CD’s, or magazines can provide tremendous encouragement to those unable to leave their homes due to pain and fatigue.
• Affirm the individual’s worth and value. Feelings of insignificance and low self-worth often accompany chronic illness. Verbally affirm those you know who live with chronic illness. Don’t “assume” they have it “all together,” even if they look like they do! Speak words of affirmation, based on who they are not on what they do.
• Listen. Be a “safe place” where those suffering can express frustration, anger, or discouragement
• Understand when those living with chronic illness arrive late or leave early. The chronically ill struggle with excessive fatigue, making long meetings and traveling to conferences and events difficult. Allow for late arrivals and early departures.

National Invisible Chronic Illness Awareness Week brings attention to an important but often overlooked issue–the challenges faced by the one in two Americans who live with chronic illness and conditions. It is worth both celebrating and supporting!

Author and speaker Mary J. Yerkes has lived with rheumatoid arthritis and ankloysing spondylitis for twelve years. She writes and speaks frequently on “living well” with chronic illness. Visit Mary online at her web site.

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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

____________

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

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What is an Invisible Illness?

Invisible illness comes in all shapes and sizes… and ages!

The purpose of National Invisible Chronic Illness Awareness Week is to provide people with the feeling of validation that their pain is real and that they can feel a sense of inclusion for a change, rather than exclusion. We also seek to bring about awareness of countless diseases, conditions, and chronic pain.

With this as a part of our purpose, our definition of “invisible illness” could be considered rather “loose.” Most illnesses are invisible at some point in the disease progression. One with rheumatoid arthritis, for example, may have the disease completely unseen in the first years of the diagnosis, yet it can become more visible as degnerations of the joints occur.

One with multiple sclerosis may go from looking perfectly healthy to being bedridden and then go into remission and have their illness be “invisible” to anyone looking for signs of sickness. Remission may last for months or even years. Or the visual signs may not show, but the illness may still be progressing.

We invite anyone or any organization that represents an illness to be involve with Invisible Illness Week. It is an opportunity to bring increased awareness to a cause you are passionate about while also educating the general public that those with illness may “look so good” but are still experiencing considerable pain.

It is no secret that those with invisible illness may be seen as exagerating their diseases or pain, or even making it up entirely. “The volunteers of National Invisible Chronic Illness Awareness Week hope to call attention to situations such as parking in the blue spots (with a logo that has a photo of the wheelchair) to responding to “advice” by Dear Abby that could be considered irresponsible.

Not just illnesses are invisible. We hope to bring awareness to conditions such as chronic migraines, autism, cancer, to bi-polar disorder. While many of us with an invisible illness have heard “you look so good” moms of children with autism are often told, “If you just disciplined him more…”

If you have to ask, “Do I qualify?” the answer is “Yes!” We’d love to have you join us to bring about more awareness to whatever health or illness cause you feel passionate about that impacts you or someone you love.

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Can Those with an Invisible Illness Park in the Blue Spots Without Others Seeing Red?

“Do you know the fine for using someone else’s handicapped parking permit is $300?”

“That parking spot is saved for the disabled! You should be ashamed of yourself!”

Nearly everyone with an invisible illness has been told, “You don’t look disabled to me!” One of my friends replied, “Well, you don’t look stupid to me.” I just bite my lip to try to prevent the tears from forming, broken-hearted that I appear to be deceptive, when I would do anything to give back this parking perk that I use on a rare occasion.

As I circle the parking lot a fourth time on this day I hope for a spot to open up within two-hundred yards of the store, but there is nothing remotely close at this bustling superstore where I need to buy my prescriptions and milk for my toddler. My rheumatoid arthritis is flaring badly, causing extra fluid in my knees to dislocate pieces of loose bones. Every step is painful and unpredictable.

Finally I sigh in resignation and pull into the farthest “blue parking spot.” I reach for the placard–the one that has a bold white symbol of a wheelchair–and no, I don’t have a wheelchair–yet. So after fifteen years of having this “privilege” at my disposal I still warily scan the area before reluctantly dangling the placard from the rear view mirror. Is there anyone watching, wondering, or waiting, ready to confront me?

I’ve had scathing notes left on my windshield and many people, empowered by television exposés, have approached me with their opinions. Judgmental expressions and whispers sting just as much. My husband and I adopted a baby and when I would get my child of the car I would avoid eye contact with onlookers because I could hear their whispers of, “She’s not disabled! Or–if she is–she has no right to have a child!”

Nearly 1 in 2 Americans (133 million) live with a chronic illness. It could be diabetes, cancer, cystic fibrosis, fibromyalgia or even chronic back pain. Many illnesses make walking long distances impossible because of limited lung capacity, physical pain, or unpredictable numbness in the legs. According to statistics provided by the U.S. Census Bureau, about 96% of these illnesses are invisible. There is no sign of the illness existing, nor the use of an assistive device like a cane or a wheelchair.

I began National Invisible Chronic Illness Awareness Week in 2002, which is held annually in September, after witnessing thousands of people who had frustrations, fears, loneliness, and bitterness, about feeling invalidated. One’s illness, age, diagnosis, or level of disease degeneration, doesn’t change the emotional pain.

Strangers and loved ones alike doubt the severity of our illness or even the diagnosis. We’ve heard, “You look so good! You must be feeling better.” But we don’t feel better. We just bought some fake tan in a bottle and pasted on a smile.

National Invisible Chronic Illness Awareness Week is a time to acknowledge that invisible illness is more prevalent than we’d imagine and everyone–both those who are healthy and ill–can make a difference by encouraging someone with an invisible illness, rather than tearing someone down.

Are those parking spots painted blue because they give so many people the blues? That small area of square footage is a breeding ground for many frustrations as we are forced to defend our illness and character to total strangers. I’d gladly trade in my placard indefinitely for just a week of having my old body back when I could run, sit on the floor, or even hold a fork without tendons popping out of place.

I anticipate the day when a nationally designated system is formed. Texas law states that blue placards are for those who use assistive devices; red permits are for people with a “condition that impairs mobility.” In other states, red symbolizes six months of disability and blue is permanent. It’s confusing! And for one with invisible illness, the wheelchair symbol discredits both our physical pain and–in the eyes of others–our reputation. Until then, we rely on Invisible Illness Week bumper stickers.

The next time you see a healthy looking man loading groceries into his car–parked in the “blue spot”–don’t glare. Stop and offer to help him, or just smile nicely, giving him the benefit of the doubt. Seventy percent of suicides have uncontrollable physical pain as a factor. Your smile may save his life. At the least, it will astonish him, perhaps providing him with genuine encouragement he hasn’t felt for months.

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In Order To Appear Invisible, You Have To Be Invisible

I have, if only inadvertently, become very vocal about my illnesses (lupus and rheumatoid arthritis). When I started blogging 15 months ago, I never expected that I would become part of a virtual community of chronically ill people who are trying to raise awareness of the profound impact that illness has on patients, their families, and their friends.

I have made many friends this way, and while these alliances have become a cornerstone in helping me deal with my own illnesses, I find that I continue to do battle on a daily basis with the “outside” world, those in my immediate surroundings who are not chronically ill.

Here is an example:

Earlier this summer, I became acutely ill with a cough that I couldn’t shake. And it wasn’t until I was hacking up a lung that “normal” people started to take notice.

“Oh, are you sick,” they would ask. “You sound sick.”

And what I really felt like saying was, “I’m sick 100% of the time. This is just the 1% you’ve decided to notice.”

This is the exception rather than the rule.

The irony here is that it’s what was going on inside of me that matters. It wasn’t the fact that I was coughing up a lung (or at least sounded like I was). It was the fact that this occurred after going to the hospital for a doctor’s appointment, after riding the city bus. It is, in fact, the very invisible nature of my illnesses that were at play here. They had just decided to show themselves in a very visible, vocal way.

Those events wouldn’t cause “normal” people to get sick.

But if doctors haven’t been trained to look much deeper than giant, flashing tumors, why would we expect the rest of the world to? In many ways, illness is in the eye of the beholder.

My own mother refuses to see me as a “sick person.” But the truth is, these illnesses are my life. My life has become these illnesses. And for better or for worse, I live out each day, good or bad, because of these illnesses.

Yes, ignorance frustrates me. Because our world hasn’t been conditioned to believe in the possibility that young people can be sick – because this plays on our worst fears that the world is not a just, fair, or kind place – and that people in the prime of their lives can be struck down with no warning, with seemingly no reason, and lives can be forever changed, altered beyond comprehension.

And it also frustrates me that by virtue of that inability to understand, I am supposed to be strong, brave, resilient – any number of adjectives that describe youth and longevity. Yes, somehow, on the days when I am in so much pain that I can’t lift a half-gallon of milk to pour for my cereal, I am supposed to be strong and brave, and think that this is just some adolescent phase that I’ll grow out of?

But even for someone like me, who blogs about my illnesses, whose posts are fed through facebook, there are times when invisibility can be a good thing. When I travel to California in August, there is a very good chance that I will be wearing a mask on the plane.

I haven’t been on a plane in nearly seven years. And I’ve never had to wear a mask before. Anywhere. The thought fills me with dread – everyone is going to look and me and wonder what’s wrong with me. But given my susceptibility level, it seems like a prudent measure that I need to take.

It makes me realize that sometimes, invisibility is a luxury. The fact that I don’t have to wear illness on my sleeve all the time, while this tends to promote ignorance and unfeeling, also thwarts questions, long glances of sympathy and pity. It allows me to be in my own insular world of lupus and rheumatoid arthritis, while the rest of the world is kept at arms length, think that everything is just fine.

You don’t know what you’ve got ‘til it’s gone…

National Invisible Chronic Illness Awareness Week is important because no one is immune to illness – it can happen to anyone, anywhere, at any time – and by sharing our stories, we help to show that it is possible to live in the face of illness.

Leslie Rott is 23 years old. In April of 2008, at the age of 22, she was diagnosed with lupus and rheumatoid arthritis. She holds a bachelor’s degree in English and Sociology from the University of Michigan. She is currently working on her Ph.D. in Sociology at the U of M. She currently authors the blog Getting Closer To Myself, which chronicles her journey with chronic and invisible illness.

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Missed Opportunities to Serve Ill with Exercise Options

We just got home from my son’s karate graduation and there was a table display and representative from the new womens local health club. It opened maybe 6 months ago and they completely rebuilt the building (meaning, they have invested a lot of money, especially for these times.) Last week they put up a banner that said “Reduced rates: $49 a month.” I’m sure they owners are hurting financially.

I had actually looked up their web site about 3 months ago to see if they had any kind of classes like Tai Chi. I keep hearing about how this can be a good strength building form of exercise and it’s something anyone can do –even people in who are confined to a wheelchair. My rheumatologist has recommended it and I am desperate for some form of exercise. It’s this or the pool and let’s just say I am not buying a swimming suit right now.

I haven’t done my research on it yet–spiritually–so if anyone has some experience I’d love your comments below.

But anyway, I asked her this morning if they had anything like this that someone with very limited mobility could participate in.

No… they have a form of Tai Chi mixed with yoga, mixed with Pilates and if I couldn’t get down on the floor (which I cannot) then I wouldn’t be able to participate in 90% of the class.

“What a missed opportunity for them!” I told my husband later at breakfast. “If they had a stretching type of class for women with chronic fatigue syndrome, fibromyalgia, rheumatoid arthritis, etc. they could advertise that as a specialty. Women would come from 15 or 20 miles away. If they had an instructor with credentials, they could send out flyers to all the rheumatologists, the Arthritis Foundation, and likely get a lot of referrals.”

I think I will drop by their office later with some Invisible Illness Week brochures and give them my two-cents. I know it may be worth about two-cents, but it financial times like this it’s important to think beyond the box of how we do business, and for those of us with illness, we should remind them just how many people out here really do have chronic conditions.

The woman I spoke with tried to grasp what I was saying and she kindly gave me a 2-week freebie pass and said, “Well, when you are feeling better than come try us out.” I smiled and said, “I haven’t been able to sit down on the floor for over ten years, so I probably won’t be able to participate any time soon.”

But we can do more than just say, “No, thanks,” and turn our back and grumble about how people don’t get it right? We can show them our challenges, our numbers (how many of us there are!) and how by recognizing this fact they may even be able to corner the market on our business before anyone else!

Lisa

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Unlikely Chameleons, Living with an Invisible Disease

It’s funny. I’ve always worried a lot about fitting in, even before I was diagnosed with lupus and rheumatoid arthritis. About what other people are going to think of me. More recently, about the visual cues that signal illness.

Ironically, though, one of the things I really haven’t bothered to hide are the bruises I get from having blood drawn. Whether it’s two vials or 20 doesn’t seem to matter. I’m fair-skinned and my prolonged adventure with steroids has increased my bruising ability.

Similarly, It’s pretty hard to hide a cannula that’s in your arm for three days while you’re getting solu-medrol infusions for two hours each day. Yes, this scheduled in between the final exams and papers of my first year of graduate school. Just one of the many ironies that comes with being diagnosed with an invisible, chronic illness at the age of 22.

I know that for some people, my friends included, this is just too much “medical stuff” invading their perfect world of health and harmony. I know these things don’t make the “typical” graduate student.

Certainly, though, there are things I have made an effort to hide. The cystic zits that invaded my formerly acne free face while I was on prednisone was one thing. I finally decided to invest in some good cover-up, not so much for other people, but for myself. It’s hard enough to do deal with a changing body, both physically and mentally, let alone a changing face.

On the other hand, if we can’t show our scars and our wounds, then people are only willing to accept the healthy versions of ourselves. And being honest with ourselves, this is not always the way things are going to be. It may be the image we want to project, but it’s hard to project a false image built on lies when we don’t have much control over the situation.

There seems to be a constant conflict between fitting in and sticking out like a sore thumb. On the one hand, no one wants to wear their limitations on their forehead, displayed for all to see. On the other hand, fitting in perfectly and not “looking” ill has its own set of complications.

Sometimes people don’t believe that I’m sick or they don’t understand the severity of the situation. People don’t understand why I can’t just take a Tylenol and get over what is ailing me.

I think it’s especially hard for people my age to imagine something lasting forever. I try to explain that I’ll vacillate between better and worse, but I won’t ever be “perfectly healthy” again. This is something, that, especially when I appear so seemingly healthy, people find impossible to understand.

I think what I’m starting to realize is that just as I don’t owe anyone an explanation for why I became a vegetarian over six years ago, I don’t owe anyone an explanation for any of this. Or why I may look fine, but feel awful. Do you know how many people have told me that they have friends who have Lupus and “are just fine”? I used to feel like that was a personal dig. Like, if other people have this disease and “are just fine,” I should be, too. But I started thinking that “just fine” is an assumption in the eye of the beholder.

These people may look “just fine,” and it’s not to say that their disease could be in remission, however, it seems to me that the more likely story here is that people think they look fine, and, therefore, assume that they are.

For those who don’t know that I’m sick, I don’t just go blurting it out for fun. I don’t usually say anything unless it becomes necessary. But the truth is, pretend or not, lay it all on the line or keep it all inside, I’m not your everyday graduate student attempting to get a Ph.D. It’s not an easy thing for anyone; it’s certainly not going to be an easy thing for me.

Certainly, I hope that I can finish my program “on time,” which is just a euphemism for “before my funding runs out.” But the thing is, I don’t have the answers for when I am going to be “ill” or “not.” And with the unpredictability of Michigan weather, it means I’m kind of out of luck as far as “climate control” is concerned.

Sometimes I wonder, though, if our lives would be easier if we didn’t want so badly to be noticed. There are times when the ache to be normal is so deep, I would do almost anything for one day of not being ill. I often feel like I am caught between two worlds.

On the good days, I feel like I don’t quite fit in to the world of the chronically ill, even though I know that for most of us, the severity of our diseases ebb and flow. On the bad days, I definitely don’t feel like I belong in the world of the healthy. I don’t feel understood at all. And it’s on these days that I realize that our need to be noticed and acknowledged is of the utmost importance. Our silence can have deadly consequences.

National Invisible Chronic Illness Awareness Week is worth celebrating because it brings awareness and much needed attention to issues that profoundly affect the lives of many people.

Leslie Rott is 23 years old. She holds a bachelor’s degree in English and Sociology from the University of Michigan. She is currently working on her Ph.D. in sociology at the U of M. She currently authors the blog Getting Closer To Myself (gettingclosertomyself.blogspot.com), which chronicles her journey with rheumatoid arthritis and systemic lupus.

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