These women bring their personal experiences of having disabilities together with more than 30 years of research and health communication expertise. They began a group last year on Facebook called “Hidden Disability” and now have launched an invisible illness and hidden disability survey that asks some very important questions about disability. It is a secure and confidential English-language survey that will give adults everywhere their chance to share their opinions on some new disability issues.

The survey is the result of advocacy efforts of two women who both have disabilities. They have funded this research through garage sales, and are relying on word-of-mouth for this survey to reach as many people world-wide as possible. So please forward this message onto all of your contacts, friends and family, and ask them to take part too.

The survey should only take 15 to 20 minutes to do.

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One of my favorite emails from of listener that I just received this weekend says:

“I listened to the broadcast on Monday. I cried through the whole thing. I listened to it a few more times because I missed too much (crying). I felt so validated for the first time in 5 years. It doesn’t matter that my disease is a 1 in 200,000 what was discussed was common to all. I have no idea the hours of labor you put into the week or the finances or the physical cost to your body that such an undertaking had but I know it had to be great. I just want you to know that your labors made a difference. . . Just learning that what I feel is common to all who suffer with chronic illness made me realize that though I sometimes feel like I am isolated God is right there with me every step.”

Wow. Tears came to my eyes as I read her entire email (this is just a portion above) and then I printed it out and read it to my husband.

To all of you who helped me make this week possible, thank you.

Now. . . head on over to Invisible Illness Week podcasts at Blog Talk Radio to get some more encouragement. You may even find an episoide from 2008 or 2009 that strikes a chord with you too! You can also find our Invisible Illness Week programs in the Apple itunes store for free if you want to download them to your ipod.

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By Jennie Krogulski

Most of us with a debilitating chronic illness, if asked, would admit that as we traveled along the journey of life, we never saw this train called “Limitations” coming and if we had, we certainly would moved heaven and earth to get out of the way. As children we dreamed of what our lives would hold and who we would be, encouraged by those who loved us to dream big and wide. But what do you do when the life you have so carefully been creating and carving out begins to fall apart around you because of your illness?

What happens when you are no longer able to hold down a job five days a week, so you go to four, then three, and then even two becomes too much.

I was there four years ago and it was the scariest and loneliest time of my life. After twelve years of being sick, I could no longer manage many of the simplest tasks of daily living, which included holding down a steady job. Eventually, my disease, which was undiagnosed at the time, progressed to the point that I was unable to hold my arms above my head for five seconds at a time or walk more than a few hundred feet.

However, mounting medical bills and household bills still had to be paid. After pushing my body to it’s limits—I finally conceded that I had no choice but to recreate my lifestyle and find a way to work from home.

While some may see this as a luxury, for many with chronic illness it is the only way we can survive. What and how recreating your lifestyle looks like will be dependent on many factors:

• Your current field of work: Is it suitable for a work-at-home environment?
• Your relationship with your employer: Are they flexible?
• The way your home is set up: Do you have room to work from home?
• Your financial situation: Do you have funds set back to start up a small business if needed?
• Access to equipment: Do you have a dependable computer/laptop, printer, phone, etc.?
• Your abilities: What are your talents, gifts, and skills that you could use to start a small business from home that would work with your physical limitations?

Once you have carefully taken all these factors into consideration, you can begin putting a plan into place that works for you and your family. As you recreate your lifestyle, the challenges you live with on a daily basis won’t go away—but they will become more bearable. When your body is wracked with pain, you can work in your pajamas propped up in a cushiony bed. Instead of sitting at a desk in an office chair all day, you can create a “desk” space around a sofa that is more comfortable with a laptop and a laptop stand.

I started transitioning into this change in 2005, and made the permanent lifestyle change in 2007 when I opened my business, Hilton Head Nannies. Having a chronic illness and living with daily challenges, pain, and limitations certainly isn’t the life I signed up for when I dreamed about my future as a child long ago. However, I am a firm believer that there is a purpose in every serious/chronic illness and a story to be told as God’s plan unfolds. I am still learning to embrace God’s plan for my life. Each day as I turn to Him and ask for His help in recreating my lifestyle, I am finding joy, peace, and hope that break through the disease and pain and make me dream like a child again.

God bless you as you pray about what He has in store for you! Jeremiah 29:11 says “For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’”

Jennie Krogulski resides in beautiful Bluffton SC, just off the coast of Hilton Head Island. She lives with Dermatomyositis, Fibromyalgia, Toxoplasmosis, Hypothyroidism, and an iron absorption disorder. Jennie owns Hilton Head Nannies, a national placement agency, and most recently started a social services agency—Lowcountry Family Connections. Jennie delights in spending time with family & friends, and being “Jen Jen” to the many children in her life.

I’m smiling.
What else can you see?
Probably nothing.
Because you can’t see past it.

I should probably not complain that I’m living with an invisible illness. As much as I hate it, I also help perpetuate the term invisible. I don’t usually let people see past the smile because they’ll see the real me and I hate appearing weak. I also don’t want them to see what I deal with. It’s a double edged sword. It’s an invisible illness because you can look absolutely perfect while hiding a great deal of pain and it’s also invisible because we don’t want people to judge us. We get enough of that from doctors, we are afraid we’ll also get it from everyone else.

What you don’t see is the pain that starts the minute I open my eyes. I know what is going to happen the minute I put my feet on the ground. It’s a pain that makes me want to revert to crawling instead of walking. I limp toward the kitchen to make my coffee or tea, whatever my mood is that morning. Mornings are usually pain-filled so I can tell you the mood isn’t real perky. This pain continues throughout the day in varying degrees. The nights are the worst. I spend a lot of time in the bath. After that it’s in bed.

This all started after a nasty car accident in 2008. I was at a full stop and a truck hit me going approximately 25-30 miles an hour. Now, I’m not the type to whine so I was more annoyed than anything else. When the man came up to me and asked me if I was okay, I said I didn’t know. That was the truth. As I sat there it felt like an electric current was running through my body. I shrugged it off because I had things to do. I went through the rest of the year wondering what was happening to me? My back hurt, my body hurt and my memory was fading. Finally, after a year I finally had to stop working at my usual frantic pace and find out what damage was done. I never realized it would be life changing.

One of the biggest adjustments I had to make, and I’m still making, is knowing my limitations. I’ve said it before and I’ll say it again. I’ve never liked limitations. It doesn’t matter if it’s mental challenges, food or speed limits. You notice that physical limitations was not on that list. Nope, it wouldn’t be. I’ve always gone at mach one with my hair on fire and having to learn the cardinal rule of chronic illness has been difficult for me. If you push you will pay. When I have a good day, which isn’t often, I tend to make the most of it. I know, not good. You’d think I’d be getting the hang of it by now, but I haven’t. I still hate what my body has done to me.

I found my voice in blogging which is weird because I’m not real open with people. I’ve always been outgoing but very few ever got to see the “real” me. I am friendly, approachable and empathetic but not in reverse. Then I started to blog and was able to communicate on a truly different and surprising level. It wasn’t scary to have people be able to see into my soul and that has helped me open up in so many areas of my life. I tend to isolate myself because of the pain and with that isolation I’ve left many friends and family by the wayside. I’ve been able to communicate about the pain and depression. Again many things surprise me. I’ve also learned about people that suck the life out of your soul and cut them out. I have too many other things to deal with so they just had to go!

The other adjustment I’ve had to make is in the area of control. I’ve always like to control the environment around me. That’s a huge part of my personality. I’ve always felt that if I can control things then I won’t get any nasty surprises. Well, I didn’t say that it worked I just said I liked to operate that way! I’ve had to accept that I won’t know what I’m dealing with regarding my body on a day to day basis. That means I can plan but plans may change. I’ve had to let go and that isn’t easy for me. So many things haven’t been easy and I’ve had a hard time dealing with that. Fibromyalgia, and any chronic illness for that matter, wreaks havoc. I don’t care whether it’s physical, emotional or financial. It trips a domino in your life that starts with chaos and mayhem in your physical body and continues on until it messes you up emotionally. Then it loves to cause real damage when your financial life you had goes out the window. I know it’s something I have to learn to accept but it’s that darn little word called control. I don’t have it and it makes me crazy.

So it’s 3 a.m. and it’s another night of robbed sleep. I will try to close my eyes but I don’t have high hopes. I’ve taken the muscle relaxers and pain medication but my muscles are still not paying attention to the fact that they’re supposed to calm down. I’ll end this post and turn off the lights and hope beyond hope for a few hours of sleep.

Rosemary Lee lives with fibromyalgia and she tries to find humor in everyday life. Sometimes it works and sometimes it doesn’t. She says, “I am an analytical dreamer. Oxymoron? I think not.” Visit her blog, Seeking Equilibrium.

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Thursday

Wayne and Sherri Connell shared from their hearts about marriage when chronic illness is a part of life as well as information about their role as invisible disability advocates.

Then Lisa interviewed Jenni Prokopy, Christine Miserandino and Kerri Sparling, who are all well-known in the illness community due to their blogs, and they shared in a lively discussion about the friendship aspects of chronic illness.

All of them still take it one day at a time when it comes to learning their limitations and what they can do. Christine calls her time after an event that takes a lot of energy “preparing for a crash landing.” They discussed how important it is to have friends “in person” and stay connected, as well as friends online and how helpful they can be in our journey of coping with illness.

You can still listen this program any time as it is archived. Either go to www.invisbleillnessconference.com or click in the BlogTalkRadio blue box to the right of this post.

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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!

By: Carolyn Matheson, Master Certified Coach

Last Saturday a special friend was having a party and I really wanted to be fit enough to attend. To be able to enjoy good food and company and be able to laugh my head off.

I have lost count of the number of times I have said yes to friends and needed to cancel at the last minute. I recognize today that I have very limited energy and I must use it wisely. I rested the week before and was relieved to feel good the day of the party.

I have become very talented at putting concealing make up so I don’t look unwell. That of course has its downsides but on this day it was important for me to just feel ‘normal’. I had a wonderful time and treasured every minute I spent at the party.

As I look back over the last six years I can see that my life has followed the path it has meant to follow. I have a rare neurological condition for which there is no cure. Any medication I take just alleviates symptoms; today I don’t think of having this illness for a lifetime one day they may find a cure. I spend a week in hospital every 12 weeks but I don’t think about that until the day arrives. I do try and take each day as it comes.

It is taking time for me to heal, not just dealing with a physical illness, it is the emotional toll that is taking the time to acknowledge and work through in my own way. I have had to get used to a whole new way of living.

When I got sick I felt all my power had been stripped away from me. There are times when I have felt very lost. Doctors continue to provide me with all the medical care I need. I couldn’t ask for better doctors than I have right now.

What I found I needed was to make huge adjustments to all parts of my life. Has it been hard? Yes of course it has. I have struggled with my headspace; struggled to make changes. I have found it difficult to cope with everyday life.

I have had to make some different choices. They are just different. I am not grateful I got sick but I am now grateful for the different opportunities that have opened up in my life. My illness no longer controls me.
It is true that my illness has stripped me bare of everything I know today. I can now look back and truthfully say I have come through with so much more. I am still Carolyn but my whole approach to life is now different. I have integrated what I have learnt on the way as a coach with the emotional high and lows of a chronic illness.

Carolyn a Master Certified Coach and founder of People Work Best Ltd, has worked for 30 years with executives and their teams across the world. She now combines her extensive coaching experiences with writing about her own insights in how to deal with a long term and very disabling illness. It is her mission to empower one patient at a time to take charge of their health. As well as offering one to one coaching, Carolyn is also a professional speaker. Contact: carolyn@peopleworkbest.com; twitter @capcoach; blog www.carolynsmatheson.com

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First Wayne, founder of the Invisible Disabilities Advocate will be joining us for the first half an hour to talk about the idea of living with an invisible illness or hiddenn disability. And then we’re going to be joined by some women you just may know: Christine Miserandino, otherwise known as the “Spoon” gal from butyoudontlooksick.com ; Jenny Prokpy of chronicabe.com and Kerri Sparling who is the blogger behind the diabetes blog sixuntilme.com . I hope you will tune in!

Wayne Connell is the president of the Invisible Disabilities Association which he founded with his wife Sherri. Wayne’s desire to help others who struggle with disabilities has become a passion for him. He obtained a BA in Television and radio broadcasting in 1990. We will be talking with him about invisible illnesses and also the role he fills as husband and caregiver. Twitter: @InvDisabilities

Jenni Prokopy is founder and editrix of ChronicBabe.com , an online resource for young women with chronic illness. An award-winning writer, speaker, and expert on healthy living, she shares her personal experience – and rallies the expertise of hundreds of others – to help women live beyond their illness and be total Babes.
Her writing has appeared in numerous publications, and she has worked with dozens of organizations large and small, local and multinational, to create compelling messages that empower people to work better, play harder. . .and be their best. Twitter: @chronicbabe

Kerri Sparling is the founder of 6 Until Me, one of the largest patient blogs for those with diabetes. She is married to a “frantically funny, sharp-witted, and brilliant man who is both handsome and caring.” And on April 15th, 2010, her daughter joined the Sparling family. She is also a freelance writer and patient advocate.Twitter: @sixuntilme

Christine Miserandino is a writer, speaker, patient advocate, wife and mother living in Massapequa Park, NY. Christine is the founder of www.butyoudontlooksick.com, a website that provides resources and useful tips for living life to the fullest with a chronic illness. Her writing which has won various awards has been featured in numerous newspapers, magazines, medical newsletters and television media. She has been living with lupus for over 15 years. Twitter: @bydls

Wednesday's Show

Wednesday’s program covered 2 topics: “Getting Organized” and “Parenting with Illness.”

Lisa started the show with a bit of a technical glitch but she quickly was able to get her guests through. (And Lisa was dressed today!) Karen Whiting and Marcia Ramsland spoke on organizing and time management. Karen shared one of her best parenting tips, which was to have each child assigned a color and they have everything that is theirs that color, such as a towel, toothbrush, school folders, etc. She said they never passed around the flu in her home, because there was no spread of germs this way. She also shared how helpful it can be to know your “natural energy cycle.” Know what time of day you have more energy of know the seasons that are more difficult for you to get that “spring cleaning” done (it may not be in the Spring at all!)

Marcia Ramsland shared about how the little things can make a huge impact in getting organized, like just doing a “2-minute pickup” when you leave a room or cleaning up a small drawer during the commercials on TV.

Marcia and Karen both have many articles and tips on their web sites, and Marcia also has a free download of a “Time Tracker.”

Next Jill Hart joined Lisa to talk about parenting. Lisa and Jill shared a little about how hard it can be to find the right balance between raising a compassionate kid as well as not wanting them to be the “parent” to an ill parent. Christine Miserandino and Kelly Young joined a few minutes late but Christine shared how the reason was because she’d literally just gotten home from the pediatrician with her daughter who is 3. She spoke about how important it is to have a emergency plan in place for when things like your child becoming ill happens.

Kelly shared about how a child is not like a cake mix (listen to learn more!) and then the women shared a little bit about how they are a mom, someone with an illness, AND a patient advocate online (when do they write and how do they do it all?)

One caller explained how the session had been encouraging as she and her spouse were considering if they should have a child or not. Lisa encouraged her to make the decision from the heart along with her spouse and not to give outside influences too much weight in the choice.

They closed the program with Lisa saying she’d love to have them all back sometime soon for a more in depth time, as they all are an amazing group of women with lots to share.

You can still listen this program any time as it is archived. Either go to www.invisbleillnessconference.com or click in the BlogTalkRadio blue box to the right of this post.

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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