SURVEY: We need your feedback on attending the seminars for Invisible Illness Week!

We are in the final planning stages of announcing our (amazing!) guest and planning for the teleconference seminars. We need about 5 minutes of your time (and trust me, there will be prizes given away randomly to some people who fill this one out!)

UPDATE: Due to how many of you are going to be showing up, and a whole lotta other factors (including we don’t want anyone not able to come due to costs involved for long-distance) we are going to now have our seminars via BLOG TALK RADIO. It’s a piece of cake, really. You will listen to it online so make sure you have your speakers on your compute up and running. We’ll send out more details this weekend!

We are interested in knowing how many “real” conferences you’ve gone to recently; if you still go to full-day conferences; why a telephone conference is “cool” for people with illness and approximately how many seminars you plan to attend.

It will help us… (1) PLAN better!  (2) Send out a press release about the uniqueness of planning an event for those with illness so that they can stay in their homes and still hear 20 speakers in one week. I mean, really, how cool is that?

This survey is simple (a lot of “choose 1″ choices) so pleeeease take a moment to fill it out.

Thank you!

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Have You Ordered II Week Awareness Goodies Yet?

Where oh where has the time gone? It seems like we just started this blog and already we have tons of comments, great articles, and invisible illness week is just around the corner.

You can find them in our shop here at Chronic Illness Books.

Popularity: 5% [?]

GUEST BLOGGER: When Your Doctor Gives You “The Look.”

An invisible illness can be so transparent, even your doctor looks right through it!

Hey, it’s lonely enough living with a condition. I have Colitis. On the outside, I look like a healthy, happy 34-year-old (although I think I look even younger). That is, until I’m holding my gut, walking like an 80-year-old woman. When my intestinal spasms start, I tend to thump my foot like a rabbit. Why the heck I started doing that, Lord only knows!

Oh, and the comments! I was in my first trimester of pregnancy & was limping around in pain. Another girl chimes in, “You don’t really LIKE being pregnant, do you?”

But when you get “the look” from your doctor! The, “Oh, it can’t be all bad,” look when your describing the pain, the turmoil, the humiliation of being a young person with a chronic illness. That’s when it’s hard not to sink deeper into the hole of depression.

You expect your doctor to understand more than anyone. They’ve read the journals. They specialize in their field. How could they NOT know?

But the truth is, they’re human, too. You may be lucky enough to find someone who can relate—maybe they have it, or a family member they know is going through the same thing. Most of the time, the doctor is looking for solutions to your problem, and not equipped to express the empathy that you may wish to experience.

That’s what support groups are for.

So yes, your doctor is invaluable. They are usually your key to taming the invisible illness that plagues you. Just don’t think they don’t have your best interest in mind if they don’t give you a bear hug every time you walk in the door.

(Although, I do have one doctor that does.)

 

National Invisible Chronic Illness Awareness Week is worth celebrating because it delivers hope!

 

JoAnn Attison is a Certified Pharmacy Technician of 15 years. Due to her invisible illness (colitis), she is now working as a Freelance Copywriter and using her experience to write advertising copy for pharmaceutical and nutritional products and services. Her website is located at www.attison.org.

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51 Ways to Encourage a Chronically Ill Friends

When is the last time you reached out to encourage a chronically ill loved one?  If you are ill yourself, chances are it hasn’t been long at all.  Understanding what people are going through the makes it easy to reach out to them.

 

Here is an article from Lisa Copen, founder of Invisible Illness Week. It can be reprinted without permission if it’s left “as is” and includes the footer at the bottom with the link back to our site!

 

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51 Ways to Encourage Chronically Ill Friends

By Lisa Copen

 

“A good friend is a connection to life – a tie to the past, a road to the future, the key to sanity in a totally insane world.” ~Lois Wyse

1. Ask, “What events in your life are changing and how are you coping with the changes?”
2. Understand that she lives in a constant state of making decisions for which there is no guarantee that she is making the right choice.
3. Put meals in disposable containers and attach a note saying “This doesn’t need to be returned.”
4. Add stickers to envelopes for a cheerful touch.
5. Arrange for your friend’s kids to have a night with your children.
6. Don’t make a person into a project.
7. Ask, “Would you be willing to talk to a friend of mine who has recently been diagnosed with a chronic illness and offer her some encouragement?” It makes one feel good to know that her experience can offer someone else hope and that God still has a purpose for her life.
8. Wash his car and put a little note inside for him to find later.
   Remember important anniversaries, both the good and the bad. No one else will.
9. Ask, “Do you want company the day that you wait for the test results? I could come over for a couple of hours.”
10. “No matter how little you have, you can always give some of it away.” ~Catherine Marshall
11. Just listen . . . until it hurts to not say anything. And then listen some more.
12. Ask her, “How do you feel God is working through-or despite-this illness in your life? I’m interested.”
13. Ask, “What do you wish people understood about your illness?”
14. Don’t make her feel guilty about things that she cannot do.
15. Treat her to a gift of movie rentals via postal mail through a service ($7-15 a month).
16. Ask, “Would you be comfortable with having your name on a prayer list, so that others can pray for you?” Don’t assume.
17. Instead of saying, “I will pray for you,” say, “I’d like to pray for you right now, if that’s okay.”
18. Mop the floors.
19. Ask if she would be interested in writing something for the church newsletter, maybe even about the subject of living with chronic illness.
20. Buy a brightly colored umbrella as a gift.
21. Ask, “Do you have an errand I can run for you before coming over?”
22. Ask her to do spontaneous things, like go to a concert in the park, or just for a picnic. She may be more likely to participate since she knows if it’s a good day or a bad day.
23. Don’t say, “So, why aren’t you healed yet?” or “I wonder what God is trying to teach you that you just aren’t learning!”
24. For a unique gift, provide brightly colored paper plates, napkins, and utensils in a gift bag with a note that says “For when you don’t feel like doing dishes.”
25. Get her a pretty box to keep all of her notes of encouragement. Remind her to get it out and read things when she is feeling down.
26. Be her advocate. If you are at an event and walking/seating is an issue because of her disability, ask her if she’d like you to take care of it. If she says you can, be firm but not rude. Don’t embarrass her by making accusations of discrimination or by making a scene.
27. Ask, “Would you be interested in a prayer partner from our church?”
28. Purchase matching coffee mugs for you and your friend, and then commit to pray for one another each morning while using them.
29. Say, “While you’re in the hospital I’d be happy to take care of your pet.”
30. Don’t tell her about your brother’s niece’s cousin’s best friend who tried a cure for the same illness and. . . (you know the rest).
31. Find out which charity is most important to her and then give a donation in her honor.
32. Ask, “What are your top three indulgences?” and then spoil her soon.
33. Hold the door open for her. They are heavy!
34. Don’t tease her and call her “hop along” or “slowpoke.” Comments you mean in fun can cut to the quick and destroy her spirit. Proverbs 18:14 says, “A man’s spirit sustains him in sickness, but a crushed spirit who can bear?”
35. Say, “I know you must need someone to just vent to occasionally. I may not fully understand how you feel, but I’m here to listen anytime.”
36. Ask your church youth group to come over and clean up the yard during seasonal changes.
37. Don’t ask her, “How are you able to make it financially?” If she wants to share a burden she will.
38. Ask, “What would you advise me to look for in a new doctor?”
39. If your friend has a disabled parking placard and you are driving, allow her to tell you where she wants to park. If she’s feeling particularly good that day, she may not want to park in the “blue space.” Don’t be disappointed that you’ll have to walk farther.
40. Don’t gossip about others. She’ll wonder what you say about her. “Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen” (Ephesians 4:29).
41. Proverbs 25:11 says,
    “A word aptly spoken is like apples of gold in settings of silver.” Be kind, gentle, and respectful.
42. Accept that her chronic illness may not go away. If she’s accepting it, don’t tell her the illness is winning and she’s giving in to it.
43. Don’t say, “Let me know if there is anything I can do.” People rarely feel comfortable saying, “Yes, my laundry.” Instead pick something you are willing to do and then ask her permission. Try the coupon in back!
44. Ask her to share her testimony at an event.
45. Buy a magazine subscription for her on her favorite topic.
46. Plant a rosebush to view from a window.
47. Understand that you don’t need to know all of the details about the illness in order to be helpful. He’ll share with you what he’s comfortable with you knowing.
48. Don’t ask, “Why can’t the doctors help you?” or insinuate that it must be in her head. There are millions of people who are in pain with illnesses that do not have cures.
49. Avoid having gifts be “pity gifts.” Just say, “I saw these flowers and their cheerfulness reminded me of you.”
50. Send tapes of church services your friend misses to her with a copy of the bulletin and a note.
51. If she doesn’t have a cordless phone, get her one. Phone headsets are also nice.

Lisa Copen is the founder of National Invisible Chronic Illness Awareness Week and the author of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend, which can be found at bookstores everywhere.

 

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GUEST BLOGGER: When Your Illness is Embarrassing Who Really Wants to Hear About It?

There is an invisible illness that I have never heard anyone else admit to having. And quite honestly, I don’t run around and tell people that I have it because when they hear the name “hydradenitis suppurativa”, their first reaction is puzzlement. But ultimately the question comes up. “What is THAT? I’ve never heard of it.” By then, I know that I’m going to gross them out, but I begin to explain the illness and by the time I’m done, my listeners are ready to head to the hills and get as far away from me as possible. After all, it could be catching.Yes, it’s a chronic illness and it’s also known as Acne Inversa. But it’s not like the acne on your face. It hides beneath your arms, under your breasts and even in your groin. Anywhere that skin meets skin, it is likely to pop up. It’s not just a little pimple like you get on your face. It is huge boil-like sores, sometimes as many as six or seven (or more), some the size of apricots, and in some cases they bleed or get infected. Sometimes they don’t heal for years at a time. They form a sinus track under your skin and over time they get worse. They also smell, which is one reason no one admits that they have it. There is no cure and the disease is staged from a one to a three. It’s a chronic and invisible illness that is very demoralizing and many folks with the disease become depressed. Surgery is one option but it’s not a cure. The disease can come back somewhere else. There are no drugs to treat it, at least not successfully according to those who suffer from it. It is helpful for sufferers to avoid any processed foods, anything with additives and preservatives, and anything in a bag, bottle, or box. Like that’s so easy! You can only hope that you never get this disease. But if you know someone who has it, remember that they do feel like a modern leper and they are hard-pressed to admit that they have it. It is best not to talk about it because it’s really quite disgusting and there’s no hope that it will ever go away. Having a sense of humor is helpful. Joining a support group can be beneficial. A supportive and concerned mate is nice. And most of all, remembering that you keep it an invisible illness makes it almost tolerable.       National Invisible Chronic Illness Awareness Week is so important that people are admitting that they have an invisible chronic illness just so they can help someone else.

Judy Gregerson is a writer from the Pacific Northwest who also hosts an internet talk radio show. Her most recent book, BAD GIRLS CLUB, has been compared to A Child Called It, but reviewers are saying it’s better. As a youth advocate, Judy does all she can to bring the plight of parentified and abused children to light, which is why she started a talk radio show. You can listen to her at www.blogtalkradio.com/the-real-connection. Or you can visit her blog at www.imdumbfounded.blogspot.com.  Judy is the mother of two grown daughters and lives with her husband in a home looking out on the Cascade Mountains.

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GUEST BLOGGER: Can People with Invisible Illness Park in the Blue Spots Without Others Seeing RED?

This is an Op-Ed piece I wrote last year, which caused quite a stir at one particular web site. I’d love to hear your feedback too!

 

 

 

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“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 this year [Sept 8-14, 2008], 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.

 

Lisa Copen is the founder of National Invisible Chronic Illness Awareness Week, www.invisibleillness.com, and author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.” She is the founder of Rest Ministries which has served the chronically ill with spiritual support for ten years.

 

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GUEST BLOGGER: Why My Invisible Illness Makes Me a Label Reader

This past June our daughter got married. It was a beautiful wedding and of course I cried. Now imagine planning a wedding for 200 guests that is predominantly gluten-free. What’s gluten-free you ask?

Three years ago our daughter was diagnosed with an invisible illness called Celiac Disease. One year later another 4 of us were also diagnosed. Today there are 7 of us in our family that have Celiac Disease. This plunged all of us into an unknown world of new foods and diets. We got a crash course in all things gluten-free.

Celiac is an auto-immune illness that prevents the absorption of wheat, rye, barley and sometimes oats. I had no idea that these offending grains could have such an impact and that they were in just about everything!

Imagine having to giving up your favorite bread, pasta, cookies, pastries, processed meats, salad dressings, ice-cream cones, cereal, soy sauce – well you get the point.

I used to wonder why people stood and read labels at the grocery store. “Just buy it already!” was the thought that popped into my head. Well… guess what? I’m now a label reader myself. Who knew that even bacon could have hidden glutens or soup in a can or even salad dressings of all things. But it’s true – we all read labels now.

Some people in our family get sicker than others if they’ve accidentally ingested gluten. Take for instance my oldest daughter; she gets violently sick for days. My brother on the other hand doesn’t really experience any symptoms so it’s much harder for him to stick to a regimented diet. Me, I just really gassy, bloated and the odd time have diarrhea – kind of like a flu.

So back to the wedding, what did we serve?

We managed to have an amazing stuffed chicken dinner complete with gravy and steamed veggies. The buns of course were not gluten-free but we managed to score some really great pavlova for dessert for our gluten-free members. Once the dance began we brought out a huge 32″ tower of fruit, some gluten-free and regular desserts. For a really cool alternative to serving all you can drink alcohol we served all you can drink espressos, lattes and cappuccinos.

It’s not easy eating gluten-free, especially when you travel. I have to bring a suit-case full of my own food just so I can be sure I have something to eat when we get to our destination. Airports can also be tricky. But like I have told my kids who are all celiac’s you can either manage your disease or let the disease manage you.

National Invisible Chronic Illness Awareness Week is fabulous! Someone you know, maybe even your best friend may have an invisible disease.

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Betsy Hiebert lives in Winnipeg, Manitoba. She is married to Bruce and has three kids and a dog. Her oldest two are married while the third just graduated grade 12. Her passions include: family, the cottage, traveling, gardening, golfing and volunteering.

Medical trauma, conditions and illnesses have had a way of creeping into Betsy’s life in various forms over the years. Her own health concerns taught her quickly how to talk to doctors and get the answers she needed. She has acted as a patient advocate on behalf of her father and more recently for one of her girls. Numerous trips to specialists and Toronto Western Hospital have created a good basis of medical knowledge and understanding.

Author of the Personal Healthcare Journal, available at www.mycarenecessities.com

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GUEST BLOGGER: Should I Claim the Label to My Illness as Part of My Identity?

Should I Claim the Label to My Illness as Part of My Identity?

I’ve taken on many identities in my life, various activities or occupations that I affiliated myself with. In middle school, I was a dancer and swimmer. In high school, I was a musician and sailor. In college, I was an aspiring architect and photographer. Now, in my post-college life, I’m just… sick.

It’s natural to affiliate myself with groups I participate in. Shared interests and all that. As a kid, this affiliation made it easy to meet people with whom I had something in common. It gave us something to talk about, a shared point between our different lives. Even now, like most adults, I seek people who share my same interests: those who knit, or read, or sail, or speak French. As a kid, a big part of my identity was what I spent my time doing. You are what you do.

Now that my chronic illness (chronic Migraines) defines my life and overshadows everything I do, it’s hard not to define myself by my illness. I am a Migraineur. I Migraine. This self-definition drives me to seek others who also suffer from Migraines (whether chronic or episodic), and others suffering under the label of “invisible illness”. I’ve joined a thriving online community of Migraine and invisible illness sufferers, all who can empathize with my daily struggles.

I worry that by defining myself as a chronic illness sufferer – and no other definition – I lose the essence of who I am. Migraines, after all, have taken over my life, giving me not a moment of my day when my head doesn’t hurt, I feel nauseous and dizzy, and I can’t stand to look at any sort of light. When Migraines define everything I do, it’s hard to stop them from also defining my existence.

But I am not Migraines, and Migraines are not me.

So who am I?

I’m a young woman, a girlfriend, an aspiring architect. I’m a knitter, photographer, musician, sailor. I read, watch tv, do puzzles, pet my cat. I draw, I think, I write. And I happen to suffer from Migraines.

It’s a delicate balance between my Migraines and my identity. But I’ve found that some of my self-definitions – knitter, reader, writer – are what help me cope with the chronic pain, because they help me to connect with myself and with other, healthier people in the world outside my Migraines.

National Invisible Chronic Illness Awareness Week is an excellent way to raise awareness of invisible disease, and bring together those from all walks of life who suffer invisibly, if not silently.

 

MJ is a 25-year-old chronic Migraine and chronic daily headache sufferer. In her healthier life, she works in the architecture field, with the dreams of designing urban architecture around the world. In her Migraine life, she blogs (http://rhymeswithmigraine.blogspot.com) and participates in a number of online health communities, including MyMigraineConnection. Her goal is to promote awareness and understanding of Migraine, a genetic neurological disease. In her spare time, she knits, crochets, sews and reads. She also enjoys traveling and black and white photography, and hopes to continue both despite her illnesses.

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We’ve Joined Facebook!

Okay, so frankly I am still figuring out exactly all that Facebook offers, but some of you are way ahead and me, so maybe you can help us along.

We are listed as a “cause” and of course, our cause is National Invisible Chronic Illness Awareness Week (I know… you’re shocked, huh?)

So head on over and sign up for the II Week Facebook “cause.”

Together, we can make a difference (and I really mean together… because I need your help! Anyone a Facebook expert who would like to help me out here?)

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SURVEY: Internet Friendships – How Much Do They Help You Cope with Illness?

We’re curious… how much do your internet friendships help you cope with your invisible illness? With chronic illness communities thriving, we know they do help… but tell us how you connect with others, why, and what kind of difference it makes!

The results will be shared in a future press release for Invisible Illness Week!
Take the survey here.

Popularity: 1% [?]

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