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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Connect with Other II Week Participants

Do you wish to connect with other participants of Invisible Illness Week? If so, we invite you to join the Invisible Illness Week GROUP in the Sunroom social network of Rest Ministries.

During the week while 4 seminars are happening each day, this is where we will also send you if you want to ask more questions of listeners on a particular seminar topic, if you have questions for the speakers that were not answered during the seminar, etc.

We are asking our speakers to sign in and check to see if anyone needs any additional information. If our speakers have handouts, this is where they will post a link to them.

The Rest Ministries social network, The Sunroom, has over 1300 participants and is a Christian environment for those with chronic illness. We understand that during Invisible Illness Week some of those involved may have different faiths or not have a religious preference. We ask that everyone be respectful of one another. If you do not wish to participate after Invisible Illness Week you can delete your membership.

Another option is to leave comments at the Blog Talk Radio web site where other listeners or the speakers can connect with you.

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Get Ready By Testing Your Computer Speakers

Invisible Illness Week starts 9/14 at 9AM Pacific time in the USA. You will log onto the web site here at Blog Talk Radio.

…and if a program is currently LIVE it will start playing through your speakers.

You can also to listen to the workshops any time at www.blogtalkradio.com/invisibleillnessconf or you can download them from itunes onto your ipod. Just search “invisible illness podcast.”

Now is a great time to make sure your speakers are working!

The only thing that you will need are a pair of speakers connected to your computer! We recommend going to our programs last year that are archived at Blog Talk Radio and clicking on a few programs to see if your speakers are working.

I have logged on to Blog Talk Radio but I am not hearing anything. I can’t get it to work. What do I do?

First, don’t panic. All programs are recorded so it will be there later. Secondly, here is the help section from BlogTalkRadio.com . Make sure your speakers are also plugged in and the volume on your computer is turned up (Start>Control panel> -then look for something that is Audio/Volume, etc)

We have found the support/help at Blog Talk Radio to be very good in helping you find what may be wrong in case you cannot hear the program.

Their blog says

Visit the BlogTalkRadio Help Center – There are two great places to learn more about BlogTalkRadio and how to make it work to your advantage. The first is the BlogTalkRadio Learning Center located on the main BTR site. Included are tutorials, FAQs, screencasts and more, to help make your experience with us as simple as possible. The BlogTalkRadio Help Center, located on the BlogTalkRadio Blog, is a work in progress listing blog posts offering tips and ideas for a positive experience.

Worth noting: Lastly, we have room for 4 callers to call in to the show. You can actually listen to the show this way, but we also want to keep the lines open for callers after the workshop. So you can call to listen, but you may get bumped.

ALSO SEE: FAQ About the Conference | Overview of Conference

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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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Add Our Button to Your Site

Looking for an easy way to let others know about II Week? Put our animated button on your web site. Code is below that you can just copy and paste.

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54 Ways You Say You Respond to “You look so good!”

“You look so good!”  Over 1200 of you took our survey last year (you can still take it here if you want) and you shared how you respond to this compliment that pulls at the heartstrings.

Sometimes you just have to respond… a smile doesn’t say all that you want to say, but one of the temptations is to use sarcasm in our response.

Most of us can say that it depends on who says it. We may be more likely to smile and say, “If only it were true!” to a friend who doesn’t really get it. To the person behind at us the grocery store who commented about our groceries, we are more likely to say something sarcastic since we don’t have to deal with repercussions of  a stressed relationship.

Just remember that our seemingly justifed bitter comments back at them can only alienate people more and it does nothing to create an awareness of invisible illness. But who of us doesn’t relate with wanting to say a few of these things on the list below?

The most telling comment I read was from a woman who simply said, “I wonder why they can’t see my pain in my eyes?” It’s a good reminder that though we sometimes think the world should accommodate our emotional needs, who around us is hurting for other reasons (divorce, loss of job, loss of loved one, etc.) and they are wondering about us, “Why can’t she see the pain in my eyes?”

Be sure to add your own at the bottom in the comments section!

1. I am hangin’ in there…
2. I am so blessed. God is so good.
3. Drugs are a wonderful thing
4. I have my good days and I have my bad days.
5. I clean up well.
6. I have my ‘good’ days….but this isn’t one of them!
7. Thanks, I wish I felt better.
8. That’s a perfect example of how you can never judge a book by it’s cover.
9. Thanks, but there are many aspects of MS which you don’t see … would you like to know more about it?
10. That’s what most people think since pain can’t be seen most of the time. Have you heard about Invisible Illness Week? It’s really helpful to let people now that most illness is invisible.
11. I’m trying to appreciate that fact. I know the day may come when I have to use a wheelchair or a cane, and my illness will be more visible.
12. You should be on the inside.
13. Thanks. I have more to be grateful for than I have to complain about – which means I have a LOT to be grateful for!
14. Well I guess I did good job on my makeup, because I am having a hard time to tell the truth.
15. …And that’s all that really matters, isn’t it?
16. Powder and paint, make you what you ain’t!
17. It took a lot of work to look like this.
18. It’s God shinning through me
19. It’s nice of you to think so, but you’re missing the pain and agony that I really am in.
20. And you look so wise. Looks can be deceiving though, huh?
21. I’m having a “good face” day.
22. Yeah. My kid thinks it’s cool I’m an ill person working under-cover!
23. I do a great job hiding how I really feel.My life is still very challenging and probably will always be, but I am hanging in there, keeping a positive faith, and gratitude as THE attitude. Thanks for their concern.
24. I’m trying my best to do well OVER my circumstances instead of being under them!
25. It’s up and down.
26. I’m still struggling, but it IS nice to have a day when I am able to pull myself together and make it out of the house!
27. I’m not complaining about my looks.
28. I’m very good at pretending.
29. Good, because if I looked like I feel it would scare you to death.
30. Actually, I still am really hurting…
31. I am 36 years old outside but 85 inside
32. Thank you. I’m on my way to the Oscars.
33. Thanks, I’m grateful for this good day.
34. Things aren’t always what they seem.
35. Praise God, I’m glad that he enables me to look so much better than I feel.
36. Thanks, that’s God’s joy shining through!
37. Have you ever heard of the spoon theory?
38. I am upright which is better the alternative
39. Thanks, want to swap bodies for a few days?
40. Thanks, I guess I am fortunate that I have an illness that can’t be seen.
41. Thanks. I like good days.
42. Want to step inside my skin?
43. It’s amazing what a shower can do. I guess I am all cried out for now
44. Thanks…I wish I felt it!
45. I’m not complaining about my looks.
46. I’m very good at pretending.
47. Looks can be deceiving (and smile)
48. Thank God for makeup!
49. Thank you for caring. I try to act like I feel better than I really do.
50. Thanks, I am trying to even though it will never go away. i just try to remember things could be worse.
51. I’d be great if it wasn’t for the pain.
52. I’d complain but who wants to listen.
53. If I can’t feel good, at least I am determined to look good!
54. I’m in good shape for the shape I am in!

What do you say? Or what would you say if you could say anything (keep it clean!)

* This list can be reprinted. Please add the following at the end:
This list is compliments of National Invisible Chronic Illness Awareness Week at www.invisbleillness.com, based on a survey of over 1200 respondents. Get involved in Invisible Illness Week each year during September, including our 5-day virtual conference online.

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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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Tweets! 20 Things to Say to an Ill Person

We’re Tweeting these for 20 days!

Thank you for tweeting any of them any time! Oftentimes people are told what not to say. This is a great help in giving them an idea of what to say! Feel free to add your own ideas in the comments below. We’d love to hear them!

http://ow.ly/h2tL Things TO SAY to an ill person #1 I don’t know what to say, but I care about you #iiwk10

http://ow.ly/h2tL Things TO SAY to an ill person #2 I’m going to the grocery, what can I get you? #iiwk10

http://ow.ly/h2tL Things TO SAY to an ill person #3 Do you just need to vent? I’m all ears! #iiwk10

http://ow.ly/h2tL Things TO SAY to an ill person #4 If you need a good cry, I’ve got plenty of tissues and a shoulder #iiwk10

http://ow.ly/h2tL Things TO SAY to an ill person #5 I really admire how you are handling this. I know its difficult. #iiwk10

http://ow.ly/h2tL Things TO SAY to an ill person #6 I’m bringing dinner Thursday. Do you want lasagna or chicken? #iiwk10

http://ow.ly/h2tL Things TO SAY to an ill person #7 Can I get your kids 4 a playdate? My kids R bored. #iiwk10

http://ow.ly/h2tL Things TO SAY to an ill person #8 I cant sit still. Got any laundry I can fold? #iiwk10

http://ow.ly/h2tL -Things TO SAY to an ill person #9 What can I pray 4 you about that no one else is praying 4? #iiwk10

http://ow.ly/h2tL Things TO SAY to an ill person #10 Can I bring a few friends over 2 clean your house fast? #iiwk10

http://ow.ly/h2tL Things TO SAY to an ill person #11 I don’t have any idea what U R feeling, but I will always listen #iiwk10

http://ow.ly/h2tL Things TO SAY to an ill person #12 I saw these flowers & thought they’d cheer you 2day #iiwk10

http://ow.ly/h2tL Things TO SAY to an ill person #13 How can our church encourage those with chronic illness? #iiwk10

http://ow.ly/h2tL Things TO SAY to an ill person #14 Tell me what it is really like to be you for a day #iiwk10

http://ow.ly/h2tL Things TO SAY to an ill person #15 I made too much dinner for our family. Can I bring U some? #iiwk10

http://ow.ly/h2tL Things TO SAY to an ill person #16 U R amazing. How has your illness given you appreciation 4 life? #iiwk10

http://ow.ly/h2tL Things TO SAY to an ill person #17 Do U want me 2 come over while U wait 4 test results? #iiwk10

http://ow.ly/h2tL Things TO SAY to an ill person #18 U listen 2 me better than any other friend. Thanks #iiwk10

http://ow.ly/h2tL Things TO SAY to an ill person #19 I have Monday free if you need me 2 run some errands or take you #iiwk10

http://ow.ly/h2tL Things TO SAY to an ill person #20 – Tell me about this God who gets U thru 1 more day? #iiwk10

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How to Answer, “How are you?”

You know the greeting, “Hi, how are you.” All of us who have invisible illnesses stumble in our minds about how to respond to the question. We never know what to say.

It is a general rule of polite society to inquire how another person is feeling. Sometimes this is a formality, asked but not wanting an answer. Lately, I find myself selectively answering some people, “I’m just fine.” When I know I am bothered by the muscular and bone aches. Those who I know best get the more accurate, truthful version.

I know God doesn’t want us to lie about something as vital as our chronic illnesses. Also, I don’t want anyone’s pity or be thought as one wanting attention I felt guilty when I realized I was telling fibs to half the people I see.

Several years ago, I went through a prolonged time of emotional stress. I couldn’t share with my friends because it was very personal. I found myself saying, “Thank you” to those who inquired about how I was.

The phrase caught a lot of people off guard. For those who would ask, “What does that mean?” I told those people. The two words were verbal shorthand usually conveying three options for them to decide which applied.

1.) Thank you, but I can’t talk about it.
2.) Thank you, but we don’t have enough time to go into it.
3.) Thank you for asking. I need your prayers.

As we learn to cope with these unseen ailments, we can become either better or bitter. As for me, I want to be thought of for my good habits and nice deeds I have been able to do and not for the grumbling.

I found a scripture that tells me how I can answer King David wrote a poem to God. “Let the words of my mouth and the meditation of my heart be pleasing in your sight, O, Lord, my Rock and, my King]”  (Psalm 19:4)

Sometimes, I can honestly say I am doing better. Other times, I answer with doing okay. But then, I am still not being honest with the other person or with myself. I might, for a while, revert to replying to those who inquire about my well-being with those two small words, “Thank you.”

National Invisible Chronic Illness Awareness Week is… necessary, very necessary.

Cecelia first experienced arthritis-like symptoms when she was 22. That next winter, she took a nasty fall on ice and injured her lower spine. Her most recent round of invisible illness caused her to retire earlier than she intended. It was only in Sept. 2008 that she was diagnosed. Visit her web site here.

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Feeling “Like the Dog…”

The first story (snippet) is an excerpt from a story I am working on (indefinitely- LOL) and although you may not understand why I’m starting off with this… um- it’ll come to you pretty soon. [wink]

“Wilson! For the last time- will you be quiet?” Harmon was simply at his wits end. If that dog didn’t stop barking and yelping he would possibly kill that animal. Well, he wouldn’t kill him. He loved Wilson and enjoyed his company- especially during the last few years. But can’t a man get some sleep around here? Harmon’s thought were interrupted when once again the night was filled with angry barks and growls and was that dog actually howling?

Please! Thought Wilson, as he whined and paced back and forth in the Kitchen. Not knowing what else to do, the small black terrier-mix ran to his owner and stood up on his hind legs and whined louder- more intently while pressing his front paws against his Master’s legs, begging Harmon to pay attention to what he was trying to tell him.

“Stop, Wilson. Get down” was his only response. It’s not that his owner, Harmon was a bad man or unloving towards Wilson. Since the day he arrived, Harmon has always been loving and playful with him.

Even after the Misses went away, Harmon seemed to need and want Wilson around even more. But tonight when Wilson heard, no- felt- sensed that there was urgency… danger outside, Harmon was not happy that he’d been awaken and did not understand the seriousness of the situation.

“Wilson-” Harmon’s voice became gentler, calming “I’ve looked outside, I’ve checked every window- heck, I’ve been in every room in the house. There is nothing going on. No one is outside.” Harmon bent over and picked up his little friend, despite the pups protests and started for the upstairs bedroom.

“Now come on, Boy. You can sleep with me and we’ll have a nice breakfast in the morning.” Wilson enjoyed sharing Harmon’s breakfast with him and hoped that breakfast really would take place in the morning. But as his owner stroked his head and ears, continuing toward the bedroom… away from the outside presence- Wilson knew he was right and that his owner probably should have listened to him.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Sitting in the small, white and confining room Joy felt as if every hope, every longing to be well hinged on this one visit. You’re being foolish, she thought to herself. This isn’t the first time and it most likely won’t be the last. True- she had been to several physicians prior to this one, but maybe- just maybe he’s the one.

Just sitting there, waiting was causing so much pain. Joy shifted her weight on the chair, trying to find a more comfortable position. Why, she thought, do doctors who treat patients in pain have the most uncomfortable waiting chairs in the world? As the door opened, she jumped- feeling a little guilty about the chair thought and then was simply thankful that mental observations and complaints were silent!

“Well, how are we doing today?” Such a simple and rhetorical question. Every doctor she had ever visited started the visit out the same way: how are we doing today? How do you answer that? Fine? Okay? Not good?

Is this question part of the visit or a social formality to be quickly gotten out of the way? If she said good or okay- wouldn’t that just be a lie? Do you really get lie-bumps on your tongue when you, uh- lie? Joy opted for an escapism. “Well…” was all she said, hoping he would take it from there and solve all of her problems.

Flipping the medical chart open and thumbing through the thick stack of paperwork, it seemed as if the doctor were reading it for the first time. “So,” he began, sitting down on the little stool with wheels and scooting closer, “What can we do for you today?”

Good grief, Joy thought and answered slowly, tentatively. “You had me go for a full work-up of tests and scans and I’m here for the follow-up.” Holding her breath she waited for the answer- or answers- or at least something to validate or explain the pains and problems and issues she’d been dealing with for so long now. What will he say, she thought to herself. Please, please let him say he knows what’s wrong with me.

“Well, the good news is we didn’t find anything abnormal with any of the images and your blood work was fine. What’s your main complaint?”

Joy screamed- loud inwardly. Why, why won’t anyone believe me- there is something wrong. I was fine- healthy for years and active and now can hardly move!

Just staring at him and holding back the tears that threatened to expose how hurt and frustrated she was was all she could do. Not waiting for a response, the doctor opened the folder again and said, “We could try changing your Anti-depressant or we have room to increase your Vicodin some more. Is there anything else I can do for you?”

The second story is really a compilation of several visits- one just as horrifying as the previous but it occurred to me last night that the part of the story I’m working on was the perfect analogy of what so many people (including me) go through when what they are suffering with or experiencing can’t be seen on an x-ray or under a microscope.

I’m not going to tell you what happens in the story with Harmon and Wilson. [LOL] Don’t ask me. I will say they are only a small part of the novel I’m writing and ‘hope’ it will be finished, um- never mind; I don’t know when!

But Wilson’s dilemma in trying to make Harmon understand that there really is something wrong- whether or not he sees, hears or knows it- it’s real.

My dilemma, along with many other men and women is that we know- know that something is not right, something is wrong within our physical body… but no one can see it yet; no one can find what it is yet; no one has been able to help us yet. What is the purpose of this entry? Perhaps it’s to create an awareness for the term Invisible Illness.

Maybe it’s to spark some interest in more research to finding answers for what is causing the symptoms; and not just label the mystery health issues as chronic pain. Or it simply could be a way for me to vent, release and heal myself of the day-to-day abuse of living with severe pain and health problems.

Maybe it’s just me hoping that someone, somewhere will listen and believe me and not just pat me on the head, up the dose and send me to bed and promise me breakfast… like the dog.

Invisible Illness Awareness Week is September 14-20, 2009. What can you and I do to help make more people more informed and understand the issues, problems and uncertainties surrounding it?

National Invisible Chronic Illness Awareness Week is probably the single most important issue in my life currently. It is important of raising the level of information and understanding of the problems when living with an unseen adversary and its effects. If it sounds like I am making this matter seem as if it is life and death- it is because for me… it just may be.

Joy lives in a small town in the Midwest, USA. She and her husband have three adopted children whom they home school. Prior to becoming ill, Joy was the System Admin for the local library full-time and part-time worked and volunteered at the local Homeless Shelter/Food Pantry.

When not teaching the children, Joy spends her time blogging about her continued journey to wellness and writing fiction, painting and enjoying the world of The Sims 3. On days she is not physically able to participate in hobbies- she is comforted and encouraged by God’s Word, her family and her fur-babies: a pack of Bichon Frise.

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