Does Michaele Salahi’s admission of living with MS help or hinder awareness about invisible illness or multiple sclerosis?

I am thrilled to announce that I recently had this blog post, “Does Michaele Salahi’s admission of living with MS help or hinder awareness about invisible illness or multiple sclerosis?” ran over at the Huffington Post. Please be sure to visit and leave a comment to help us increase awareness of invisible illness issues.

Lisa Copen
Invisible Illness Week Founder

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FRIDAY’S 9/17 SEMINAR: Working/Home Business & Closing Half Hour

Can you believe it’s already the end of the week? We hope you’ve been having a great time and have enjoyed the workshops. If you have missed any just a reminder that you can find them all (and the last 2 year’s worth too!) on Blog Talk Radio at http://invisibleillnessconference.com .

Today we have some great speakers to chat with us about working. This includes Rosalind Joffe a career coach for those with chronic illness, Tricia Robichaud who is a coach as well as and a wonderful home-based business; and Jenny Krogulski who has started a business at home matching nannies with families. This is an amazing group of gals we know will encourage you even if you aren’t planning to work or cannot work.

Then, Twila Belk, author herself and assistant to Cecil Murphey will join me to close up the last half hour and she has some joy that will help us end on a beautifully upbeat note.

Career/Working:
* Rosalind Joffe built on her own experience of living with chronic illnesses for 30 years, including multiple sclerosis and ulcerative colitis, when she founded cicoach.com. This career coaching firm is dedicated to helping professionals with chronic illness develop the skills they need to succeed in their careers. Rosalind Joffe is a recognized national expert on chronic illness and its impact on career. She is the co-author of Women, Work and Autoimmune Disease: Keep Working, Girlfriend! Twitter: @WorkWithIllness

Jennie Krogulski is the founder of Hilton Head Nannies. Despite living with a chronic illness, she has started a successful business and will share some of her best tips. Twitter: @HHNannies

Trish Robichaud is a Maximum Life & Healthy Business Coach who lives with multiple sclerosis & major depression. She teaches women living with chronic illness or disability how to honour and accommodate their health while striving to achieving work/life balance and entrepreneurial success through her “Business Beyond Chronic Illness” coaching program. Download her free Optimal Health Kit at ChangingPaces.com. Twitter: @OptmlHealthGuru

LISA AND TWILA FOR THE LAST HALF HOUR – CALL WITH YOUR COMMENTS!

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The Invisible Symptoms of Multiple Sclerosis

Many symptoms of multiple sclerosis are invisible to the casual observer. We aren’t all in wheelchairs or use canes, nor do we all share the same obvious symptoms. We often appear to be the very picture of health.

In many ways, that’s a good thing. Who doesn’t want to look healthy, strong, and vital? In fact, some of us go to great lengths to achieve that healthy look. But the invisible symptoms of M.S. can also cause misunderstanding and lead to emotional stress.

Some of the most common complaints of people with M.S. are fatigue, numbness, and weakness– things that cannot be seen and often cannot be understood by those who have not experienced them at high levels. These seemingly benign symptoms can necessitate missing work, school, or social obligations, causing chores to pile up and misunderstandings to arise.

That’s enough to contend with, but what if your family, friends, and co-workers don’t really believe you? What if they think you are faking, or taking advantage of your diagnosis?

“But you look so good” is the phrase that in most circles is taken as a compliment, but people who live with invisible illness often view it as having a double meaning. We may be inclined to wonder if the real meaning was, “you look fine — there’s obviously nothing wrong with you, so why are you faking it?”

That kind of emotional mind game can take a heavy toll and even leave us to question ourselves. It’s not difficult to fall into that trap. In the long run, we are limited by how much we can change someone else’s thinking, but eventually, we’ve got to make peace with ourselves.

We can do our best to educate those closest to us, to help them understand invisible illness. But at some point we’ve also got to stop evaluating ourselves based on what others choose to believe. Not everyone will get it, and we cannot allow that to affect our own self-worth.

If we put in the effort to look good, perhaps it’s best to accept the compliment and not concern ourselves with any hidden — or not so hidden — meanings. Ultimately, we live with our own truth.

If you love someone who lives with invisible illness, please take the time to learn all you can about their condition and really listen to what they have to say. Appearances can be deceiving, and not always a good indication of health status.

And one more tip — instead of saying, “But you look so good!” try “You look great… but how are you really?” A little compassion goes a long way.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a multiple sclerosis patient, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. This was originally posted on Care2.com and has been reprinted with the author’s permission.

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Savoring the Privilege of Walking

By Ann Pietrangelo

Do you recognize disability when you see it?

Last week’s post [at Care2] about an able-bodied woman using a handicapped parking space, then suing over the ticket she received, resulted in spirited conversation in the comments section.

It’s an emotional topic for a lot of people, not the least of whom are those who have the legal right to use the specially marked spaces, but who have an invisible disability. Judgments are often made based on nothing more than appearance.

When a person with an invisible disability pulls into a handicapped parking space, even with the appropriate legal tags, they are apt to get stares, glares, and outright anger.

We can try to educate others to understand invisible illness, should the inspiration strike, but we should never apologize for needing or using a handicapped parking placard. We owe no explanations. It stings, but not everyone will get it or care. Such is life.

If you’ve ever observed a seemingly healthy person pull into a handicapped parking space and felt anger toward them, you might want to consider there might be more to the story… and thank your lucky stars for your good fortune.

It could be a heart condition, a neurological condition, or any of a long list of chronic illnesses that affect mobility. Appearances can be mighty deceiving. Not all disabilities require a wheelchair.

Rather than give up and lock themselves away, these folks choose to go out into the world. Bravo! The little extra help from a more convenient parking space makes that less daunting.

While you observe them walk from the parking space, you are not privy to the advance planning that allowed them to get this far on this day. You don’t see added burden when they find that a business has stairs, but no elevator; or a door too heavy to pull; or the long line at the register that will severely test their strength and stamina.

If you don’t need special parking, please don’t resent or judge those who do. It is called a privilege, but no one really wishes for health problems in order to get this privilege. No, people who need it would rather not. Trust me on that.

Daily life is can be a hassle, and wouldn’t it be great if we could all just pull up in the first spot in the lot and get to our business?

That we have the ability to walk and take care of our own errands… that we can climb the stairs and pull the door open and even hold it for the next person… that we do not need the handicapped parking spot… that is the true privilege.

I have relapsing/remitting multiple sclerosis, and with that comes constant change. Sometimes I can’t walk more than a few feet at a time, sometimes not at all; much of the time I can walk, and it is a glorious privilege, one I shall not squander or take for granted.

If you can walk without too much difficulty, if you do not require a handicapped parking placard, you are fortunate indeed.

Savor the privilege of walking.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a multiple sclerosis patient, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes.

This was originally posted on Care2.com and has been reprinted with the author’s permission. Follow Ann on and has been reprinted with the author’s permission. Follow Ann on Twitter @AnnPietrangelo

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Creating Pain Awareness Through Photography

We received this information from the CT Pain Foundation and thought you may be interested!

Nearly seventy-five million Americans deal with pain. Chronic pain is an all-encompassing problem that knows no boundaries. It affects the poor and the rich, the young and the old, male and female. No race, class or age is spared from its debilitating hold.

In a sense, pain is the invisible disease. Pain is intangible, subjective and personal. Each person has a different level of tolerance and a personal way of defining pain’s intensity. As a result, many people with pain face judgment and ridicule. Pain leaves people feeling unheard, misunderstood and alone. It often goes untreated and underfunded.

CT Pain Foundation, a nonprofit, is dedicated to creating chronic pain awareness, empowering survivors and generating change. The INvisible Project is aimed at accomplishing all three.

September 30, 2010 in New York City
October 21, 2010 in Connecticut

The INvisible Project is a photojournalistic showcase of the day-to-day experiences of real people with chronic pain. To reflect the widespread effects of pain, a variety of conditions are represented, including cancer, complex regional pain syndrome (CRPS), Ehlers-Danlos syndrome, juvenile arthritis, multiple sclerosis, and fibromyalgia.

The goal is to make visible the experiences and strength that are often hidden behind the walls of hospitals and bedrooms. The INvisible Project will contrast the fragility of our physical bodies with the immense fortitude of spirit essential to living each and every day.

To raise awareness and funds, the photos and stories of the ten INvisible Project participants will be on display at the Times Square Intercontinental in New York City on September 30, 2010. As September is National Pain Awareness month, the INvisible Project is determined to spread awareness, create advocacy and ___ patient rights. The second event is scheduled October 21, 2010 at the Westport Play House in Westport, Connecticut.

One hundred percent of the proceeds will directly help those living with pain. To expand its programs and support groups, seventy percent of the raised proceeds will go to CT Pain Foundation. The remaining thirty percent will fund chronic pain research.

It is the mission of the INvisible Project to validate the suffering while highlighting the strength and courage of chronic pain survivors.

About CT Pain Foundation:
CT Pain Foundation is a 501(c)3, non-profit organization serving persons with pain, their families and care providers. Founded in 2006, CT Pain Foundation promotes healthy support groups and other positive, hands-on programs for those living with pain.

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Let Your Local Illness Organization Know

Do you have a local association or organization that you know about or attend a support group meeting? For example, the Arthritis Foundation or the Multiple Sclerosis Society are wonderful organizations.

There are literally thousands of them that serve even the rarest diseases. If you can take just a few minutes today or tomorrow and pick up the phone and call a few of them (even just one!) it would help us spread the word.

Wondering what to say? Here is a sample script:

Hi, my name is _____. Is there someone there I could speak with about events or programs?

Hi, my name is _____. I have (name of illness) and I just wanted to let the staff of your organization know about something I am involved with, It’s called Invisible Illness Awareness Week. It’s a national event to increase awareness that about 1 in 2 people in the U.S. live with a chronic illness and about 96% of the conditions are invisible.

[Oh, when is this?]

It is September 13-19, so very soon, but I wanted to make sure that you knew about it. It’s been around since 2002 and during the entire week there is an online virtual conference.

[That sounds interesting. And how you involved?]

Actually, I am just helping out the volunteers in spreading the word. The virtual conference is free and there are other things they are doing as well, such as having hundreds of bloggers blog about invisible illness, that kind of thing.

[I see. And how can I get more information?]

Everything is at the web site invisibleillnessweek.com – There are press releases, a video about the week, media information, etc. If you have any kind of emailed newsletter or place for events to list it, we just want to make sure people know about the free conference.

There are some short blurbs on the web site that can be copy and pasted directly into your email newsletter if you’d like to keep it simple too.

Thank you so much for your time. I know you are very busy and I appreciate that fact that you care.

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Job Interviews and Illness Disclosure

Two chronic issues for people with chronic illness who are  job interviewing  are: disclosure and employment gaps.

In this post, I’ll discuss disclosure.   I’ll cover employment gaps next time.

Disclosure centers on 3 big questions:

• Should I say it?
• What  should I say?
• What is the right time?
  

Recently while discussing what he’d say in his upcoming job interview, my client said that I seemed to have shifted my position on whether to disclose or not.  He was referring to Managing Your Career in The Wall Street Journal (”Should Job Hunters Reveal Their Illness“  — scroll down to the article on my web page),  in which I seem to make a case solely for pre-employment disclosure.  The article makes some good points and is worth reading.

But that article was written over 5 years ago, in a very different job market when jobs were plentiful.  And the reporter only captured part of  what I said.

For the record, I’m not a believer in rampant disclosure. I haven’t heard a good reason yet to disclose a chronic illness if you can do the job as it’s expected.   This is your health history and there’s no reason you have to share it if it’s not relevant to the discussion.    “Leave This Info Out Of Your Interview”,  offers good tips and puts your health history in the red light, tmi zone.

But what if you live with symptoms that affect your performance? Or maybe you’re  “fine” at this moment but frequently have symptoms that make work difficult?   In that case,  disclosure might be a good idea. 

Yes,  there’s stiff competition for this job and you don’t want to create  “red flags” unless it seems necessary.   On the other hand, if you ask for a flexible schedule in the first of work because of illness that you never brought up, you could make people pretty angry with you.  Tred lightly and carefully.

If you decide to disclose during the interview stage, wait until you’ve created a positive impression. Don’t bring it up in the first interview when they’re getting to know you. Keep your explanation simple, to the point and focus on how the symptoms affect how your work.

Now — use this to your advantage.  Demonstrate that you’re a proactive employee by offering a few suggestions for what can be done relatively easily to accommodate your needs.  Show that you’ve done your homework and found that their employee benefits policy allows for the flex scheduling you need.  You might even suggest that illness has to you how to think on your feet, problem solve and be resilient. Just don’t go overboard with the sob story

Looking for more info and ideas?  I discuss this in detail in my booklet (Are You Talking? – part of the Career Thrive Series).

What have you found works –  or backfired –  for you?

Rosalind Joffe built on her own experience of living with chronic illnesses for 30 years, including multiple sclerosis and ulcerative colitis, when she founded cicoach.com. This career coaching firm is dedicated to helping professionals with chronic illness develop the skills they need to succeed in their careers. Rosalind believes firmly that living with chronic illness does not preclude living a full and successful life. * She will be speaking during our Invisible Illness Week Virtual Conference.

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How to Be a Fabulous Friend to Those with Illness

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

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

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

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

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

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Can You Job Hunt, Live with Illness and Stay Motivated

Looking for a job in a depressed economy and living with a chronic illness that makes your employment history a bit “sketchy”.

Yikes, it doesn’t sound pretty. But at the moment, that describes many of my clients. Not surprising, is it? Ten years ago, a robust, growing economy made it much easier for anyone – even with disabling symptoms – to find a job. But that’s not now.

As one person confided recently, “The good news is that when I go to networking events, so many are in this sinking boat with me . At least I don’t feel like it’s just me and must be my fault.” Cold comfort.

How do you keep the job search going when all you hear is how bad it is? How do you force yourself out of bed each day, especially if your body is in pain or a state of extreme fatigue?

On a recent call, L started by setting “desired outcomes” for our meeting, as we always do. She wondered how to stay motivated when she keeps hitting stone walls in her job search. She spinning – – feeling hopeful with a new lead and then, realizing it’s going nowhere, losing heart.

For a brief moment, I was right there with her and felt her fear. But then I realized that we could break this overwhelm feeling into pieces she could hold onto and manage. As we discussed it, we both realized that a project management approach would help her stay away from distracting emotions and keep her on point.

Four questions to frame the “finding a job” project:

1. What do I want to achieve? Just like with any project, you have to be able to define your desired outcomes. Describe the kind of job AND what it would do for you so you can remember why this is so important.
2. Why do I believe this is possible? Identifying this helps you stay motivated and focused. Even if your first response is to say, “I don’t”, that’s just not true. Some part of you believes . Dig deep and find it.
3. How long can I realistically give this? It’s easy to spend some time every day worrying that since this hasn’t happened, it will never happen. That’s a waste of your time and energy. Create a realistic time frame and don’t let yourself look back until you’ve reached it.
4. What will it take to get there? This is the specifics. Create a list of activities, including people to meet, places to go, ideas to research. Then put some kind of time frame to it. Put it on a big white board -and check off when you’ve done something so you can see how much you’ve done!

Now, for the tactics. How to keep going every day in the face of rejection or even worse, no possibilities?

1. Start every day with one thing that makes you feel good. A delicious cup of coffee, a walk , read the newspaper. Something that you look forward to and helps you get out of bed.
2. Next, do one productive thing. It doesn’t have to be work related but it has to yield tangible results. It could be washing the bathroom floor, planting some flowers, writing a note to a sick friend. This gets your juices moving.
3. Now, look at your activities list and give yourself 3 things to do that day to move your job search along.

I’d like to know what helps you? Are there things you’ve done that keep you motivated?

If you find this helpful, there are more suggestions like this regarding looking for work in the Working With Chronic Illness Workbook on my website. You don’t have to be a passive rider on the roller coaster of job hunting.

Rosalind Joffe built on her own experience of living with chronic illnesses for 30 years, including multiple sclerosis and ulcerative colitis, when she founded cicoach.com. This career coaching firm is dedicated to helping professionals with chronic illness develop the skills they need to succeed in their careers. Rosalind believes firmly that living with chronic illness does not preclude living a full and successful life. * She will be speaking during our Invisible Illness Week Virtual Conference.

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Be a Guest Blogger!

Are you interested in having a special blog post you’ve written about living with illness (especially an invisible one?) We’d love to consider it! Please submit it here and we will respond as soon as possible. If it’s accepted we will let you know the date it will appear. And yes, it’s okay if it’s been reprinted before. Just let us know when and where.

There are hundreds of thousands of blogs about living with illness and we’d like these posts to represent all invisible illness. So if you or someone in your family lives with anything from leukemia to sensory processing disorder, panic attacks to multiple sclerosis, depression to Myalgic Encephalomyelitis,  alopecia areata to diabetes… we want to hear from you! There is no illness that is too rare.

If your blog is selected, you will also receive an “I was a featured blogger for Invisible Illness Week” button to place on  your web site!

If you are looking for blogging topics visit our Bloggers Unite site where you can also sign up to commit to blogging on your own site for Invisible Illness Week and get the badge.

Please consider adding our logo or button or the badge (on the main page) to you site, Twittering about II Week, whatever you can do to help us spread the word. We want this to be an exciting time where people from all over the world with a variety of illnesses come together for support, encouragement and to create awareness about invisible illness.

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