MEDIA RELEASE: Invisible Illness Awareness Week Brings Together Thousands Who “Get it”

Living with an invisible illness can cause heartache and bitterness when one feels no one understands the significance of the illness. Invisible Illness Week provides that validation that people with invisible diseases often seek. 

San Diego, CA — (SBWIRE) — 08/27/2008 — While we assume that most people are generally healthy, you may be surprised to find out that an alarming nearly 1 in 2 people in the United States live with a chronic illness. So why is it that most of us don’t even know when a friend or co-worker is dealing with diabetes, heart disease, lupus, or chronic fatigue syndrome? Because, according to the U.S. Census, about 96% of people have invisible illnesses. 

National Invisible Chronic Illness Awareness Week is being held this year, September 8-14, 2008. It’s a secular event sponsored by Rest Ministries, the largest Christian organization that serves the chronically ill. Visit the invisible illness awareness campaign’s web site at www.invisibleillnessblog.org . You can be encouraged through dozens of articles, including daily guest bloggers, find ideas to get involved in the outreach, and goodies to help promote awareness, from silicone bracelets to brochures. Tired of those looks when you park in a handicapped spot? Be sure to pick up a license plate or bumper sticker.

The focal point of the awareness campaign is September 8-12 (M-F) during which 20 telephone seminars will be held on a variety of topics and are open to anyone. Topics may also be of interest to those with loved-ones who have an illness. Some seminars include:

- Assess Yourself: Find the Job You Desire and Can Do Despite Illness Limitations

- The Civil Rights of Patients with Invisible Chronic Illnesses

- Overcoming Self-Defeating Behaviors

- Secrets of Paying for Medical Care

- How to Get Paid to Blog

- After the Diagnosis: The Journey Beyond

The theme this year is “Hope Can Grow From The Soil of Illness.”

Lisa Copen, 39, began National Invisible Chronic Illness Awareness Week in 2002 as she continuously witnessed hundreds of people emotionally hurting just because they felt as though no one “got it.” Lisa has lived with rheumatoid arthritis and fibromyalgia for fifteen years and understands how validating it can be to just have one friend who you don’t have to explain everything to.

“Though there are hundreds of illnesses represented, and large differences in symptoms and pain levels, none of that matters more than feeling like someone understands you. When our best friends and family members are skeptical about our disease, it can be that last straw that sets us off into a spiraling depression.”

She says, “We plan to unite the millions of people who live with chronic pain and illness by offering an oasis of hope and understanding, as well as helpful information and practical tools to live the best life possible.”

Through the guest bloggers of Invisible Illness Week, to 20 seminars that supply tools to ensure that one is cared for–both body and soul–National Invisible Chronic Illness Awareness Week is succeeding in meeting that goal.

Find out more information and receive daily updates at http://www.invisibleillnessblog.org

Lisa Copen
Director
National Invisible Chronic Illness Awareness Week
888-751-7378
http://www.invisibleillness.com

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Lab Tests When You Are Chronically Ill: Do you wait for results… or call?

It’s never good when your doctor’s office frantically calls you saying “Oh, I’m so, so, so VERY sorry!”.

I used to be told “We’ll call you if something isn’t right with your blood work.” Then one day, several months after labs and well into feeling like the living dead, I got an urgent call from my doctor. It was bad news.

I was good. Like the excellent dishrag patient that I was, I waited. I assumed.

I was wrong.

It was a mistake. A mislaid paper on a busy desk. Just another lab.

Because of the long delay, I was very, very sick and it took a long time to get better.

Now, I always call for verbal results and paper copies of my labs or tests to be faxed to me. It’s a rule in our house and all my doctors know I insist on this kind of ‘open relationship’ with them. I keep a notebook of labs and test results so I can cross check between my doctors and provide them with missing paperwork if needed. I know what tests were requested and have a say in them. I know the results and the ‘norms’ for the tests because I’ve talked about it with my doctor and looked it up for good measure. I never, ever take anyone’s word- “everything’s fine.”

I am a difficult patient by most anyone’s standards because I am high maintenance and time-consuming. Most people with chronic illnesses are.

Why do I do this?

Doctors are people too. Labs are imperfect because they are run by people who don’t always read up on the current acceptable statistical ‘norms’. Nurses are busy, busy people, and sometimes… well sometimes things just ‘happen’.

Checks and balances. It’s their job to order the agreed upon test, the lab’s to do it right, and mine to be sure all the I’s are dotted and T’s are crossed. Check, double check, triple check. It’s easy to be forgotten or laid to the side when you suffer an invisible illness.

Do you know what labs or tests you had run and why? Do you know what the current acceptable normals are for those tests? Do you wait for your doctor to call you with lab results?

Diana from SomebodyHealMe asked this last question recently, and I couldn’t get it out of my mind. Here is her blog post which includes some multi-media which I’ve not yet even had time to listen to. I hope you enjoy it!

Thanks Diana for a thought provoking errr invading post.

National Invisible Illness Week is worth blogging about!

Ellen Schnakenberg is living with purpose, facing the ups and downs of misunderstood chronic illnesses of genetic origin, and knows a little about struggling… and guilt. “I have a choice in everything that happens in my life. I will not be a victim. I can choose to be defined by the pain and disability of my illnesses, or choose to go beyond simply surviving and make my experience mean something. I watched my small children one night, quietly sleeping in their beds, and knew what my choice had to be.”

Long ago, Ellen and her husband moved to a farm in Missouri to concentrate on family and follow a dream. She is a writer for WEGO Health http://community.wegohealth.com/ where you can find her blog. Ellen shares her life with her husband and 2 college-aged children, her beautiful Arabian show horses, and a menagerie of dogs and cats. Her her trusty guard dog ‘Beast’ ever at her side.

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Do You Think of Yourself as Sick?

Often with an invisible illness, when you are managing to get around and do things, people don’t see you as sick. This can be incredibly frustrating, but it also gives you the chance to decide whether or not you say that you are sick.

You may want to avoid this or say you are not sick for specific occasions, such as meeting someone new or at a job interview, or you may decide to not define yourself as sick.

Perhaps you prefer – as someone I know does – to consider yourself disabled, or perhaps you prefer to consider yourself as someone who isn’t sick, but just has health issues.I started getting severe headaches aged about 8 or 9 and by the time I when to secondary (high) school these had developed into migraines. I remember being taken into the big kids’ classroom at junior school so I could lie down in their reading area while waiting for my Mum to pick me up.

During secondary school, I spent quite a lot of time in the nurse’s room or being taken home from school with yet another migraine. My friends joked about me always carrying medications and I ended up first on preventative meds and then having to see a holistic doctor to help get control of the migraines (chocolate, caffeine and lots of other foods contributed as triggers).

But I never thought of myself as sick. I was just a kid that happened to get migraines. Maybe I didn’t think so much about it because they run in my family,

When I was about 13 or 14 I started getting excruciating pain in my knees sometimes as they gave way when running up stairs or turning corners. I didn’t think much of it, learnt to twist and shake the leg until my knee felt right and then continue on my way. My parents both had issues with joints not doing as they should so I thought little of it. But I now recognize the signs of subluxations, a part of Hypermobility Syndrome. I did not think of myself as sick – or disabled – in any way. It was just something annoying that I dealt with.

Around that same age I started getting lower back pain and was diagnosed with having too much of an arch in my lower back – something I now know is called hyperlordosis. My Dad has the same problem and I thought little of it. It was just another annoyance that I had to deal with. Physiotherapy exercises helped but I found them boring.

It was only after I developed severe IBS and Fibromyalgia Syndrome (Fibro) when I was 21 that I started to think of myself as being sick. The IBS, which was the worst symptom for some time, probably had something to do with this, as catching an infection is definitely being sick in my book and that’s how my IBS started.

The rapid development of my Fibro symptoms also made me think I was sick. It took me a few years to get a Fibro diagnosis and during those years there were plenty of times when I thought or hoped that I had something simple that could be treated – that I was sick but could be made better.

After I worked out what I had – a chronic illness – I slowly came round to the idea of being disabled as well as sick. But then I finally found a good doctor and got control of my Fibro. It’s only occasionally a real problem now, mostly just being there at such a level that I’m not sure what’s Fibro and what’s being normal-tired and normal-unfit.

I don’t think I’m sick now really. I still have a chronic condition but it is managed. I’m not really disabled by it. Am I back to being just someone with health issues? Possibly.

National Invisible Chronic Illness Awareness Week is a fantastic way of raising awareness that many people may look well but have a chronic illness.

After developing Fibromyalgia Syndrome (Fibro) whilst in her final year of University, Lindsey Middlemiss got involved in the online community and became a patient and awareness advocate through blogging and moderating on forums. Applying research skills learnt at Uni to Fibro, she delved into what is known about Fibro and is now a Fibro patient expert.Lindsey has set up a new charity in the

UK for Fibro Awareness – FibroAction www.fibroaction.org – which aims to make up-to-date and accurate information about the condition readily available to everyone, as well as improve public awareness of the condition.

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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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Name That Tune! What Songs Get You Through the Tough Times?

Music can be one of those things that gets us up out of bed when we are wiped out. It can pump up our spirits on the way to the doctors office. It can even help us release emotions with a good old cry while we listen to a sad song.

Got a song that lifts you up when you’re not feeling well? Or what about one that just describes your mood? I was trying to put together a “get ready in the morning” playlist on my ipod for my son before school. I added his favorite song “The Middle” (his “cool aunt’s” influence) and “Don’t Worry, Be Happy.” I still need to sync some more up, but thought I’d consider, “You Can’t Always Get What You Want…” by the Rolling Stones. :)

Post a comment below of your favorites and we’ll create a couple of playlists. We have some Christians out there and some non-Christians, so we’ll make up a couple versions, so be sure to post whether it’s Christian-based or not too. We’ll come up with our own lists of songs to encourage!

I’m curious to see what you all will come up with! Maybe next year we’ll need a theme song! Got a suggestion? 

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My Husband Lives With An Invisible Chronic Illness Too – “But he looks so good!”

My husband silently suffers from Degeneration of the intervertebral disc, which is often called “degenerative disc disease” (DDD) of the spine a condition. It can be painful and can greatly affect the quality of one’s life.

Disc degeneration is a normal part of aging and for most people it is not a problem; but for certain individuals, a degenerated disc can cause severe constant chronic pain.

My husband will rarely let you know that he is in pain, but I can see it in his eyes, the way he walks, and the restless nights due to pain.

The other week at our apartment complex, there was a woman trying to help her husband move a couch down three flights of stairs. Out of sheer frustration, she came running over to my husband to ask him for help. My husband politely explained to her that he was unable to assist them. From the outward appearance one would never think that this tall strapping man had anything wrong with him.

She snapped back at my husband as though he was too lazy to assist them or that he was being rude. My husband felt terrible about the situation, and even considered helping them even though it would cause him great pain.

When my husband told me about the situation, he said, “Now I know what you have been experiencing for twenty years with your invisible chronic illnesses.” He has seen how people would react to me, even when he knew how bad I was feeling, yet people would say, “You look so good, you must be feeling better!” Now, he was having first hand experiences with people regarding his health.

This man who has been so physically active throughout his life; playing football, physical jobs, serving his country as a marine during Vietnam era , is now having to adjust to life as one with an invisible chronic illness with all the ‘labels’, rude or inconsiderate comments that go along with the illness.

Although, I don’t think that the comments bother him as much as realizing that he is not as young and spry as he was twenty years ago. None of us are; and unfortunately aging is NOT an invisible illness!

To bring awareness to those who suffer from invisible chronic illness, my family will be joining thousands of other families across the USA, as we celebrate National Invisible Chronic Illness Week, September 8 -14, 2008. We plan on giving each family in our church, Desert Sun Baptist Church, in Glendale, Arizona, the book, Beyond Casseroles: 505 Ways To Encourage A Chronically Ill Friend, by Lisa Copen, founder and director of Rest Ministries and Invisible Illness Week. We encourage others to spread the word about this special week. On their website they have various ways that you can get involved. Please visit their website at: www.invisibleillness.com .

National Invisible Chronic Illness Awareness Week is necessary to help educate the public about the effects Invisible Chronic Illness has on those who have the illnesses as well as those who care for them.

Michele Williams is a wife, mother, grandmother, counselor, teacher, public speaker, business woman, and writer, who is trusting in God that He will strengthen her to rise above life’s difficulties. Since 1985 Michele has lived with multiple chronic illnesses: Fibromyalgia, Peripheral Neuropathy, Osteoarthritis, Interstitial cystitis, IBS, chemical sensitivities, to name a few. She lives in Phoenix, Arizona with her husband of 34 years, Dr. James E. Williams, Senior Pastor of Desert Sun Baptist Church in Glendale, Arizona. Michele will be a guest seminar speaker for the National Invisible Chronic Illness Week, September 8 – 14, 2008. Her topic is Illness and Faith: Does Faith Make A Difference?

Visit her encouraging and sometimes humorous blog, Michele’s Morsels – Beelieve at: http://michele-risingabove.blogspot.com . Her online business, MJ Quality Gifts & More: http://www.mjqualitygiftsnmore.com and http://jandm.healthyhometour.com

Michele will be a speaker for one of our II Week seminars. Be sure to check out our schedule for the time and date.

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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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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!

 

——————————

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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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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