Reflections on Invisible Illness Awareness Week

Invisible Illness Awareness Week is nearly over. I am sitting at the computer reading through some of the many the blogs, articles, comments and more that people have been posting on their experiences facing a world who does not understand their pain.

Wow.

Truly. . . wow.

You have been refreshingly honest, yet hopeful.
You have shared your pain, but kept it in perspective.
You have shared your hurt feelings, but without bitterness.

I am in awe of all of you who have shared your hearts. . . and your hopes.

Here are a few of the things that I have read that touched me deeply.

• I get so depressed when people just don’t get why I don’t or can’t do things they are so unaware of the pain and exhaustion. So, I just have been trying to get the message out there [about Invisible Illness Awareness Week]!
• Between work, pain, fatigue and friends I’ve become rather isolated because of it all. But taking it just one day at a time.
• I have to take so many medicines, and I am so just so tired of the whole thing – that is until I read this article. After I wiped away the tears, I began to realize that I have to start to really ‘live’ with the fact that I will have to take some of the medications for the rest of my life – and that’s ok.
• I attempted suicide in 2004 because the burden of pain and emotional distress was too much for me to continue battling. It was an eye-opening experience where I learned that I had to live for my three children. They were the reason that I decided to call my husband and tell him what I had done. And it’s still because of them that I continue to push through day after day of pain. God spoke to me that night and said to me, “You have three babies downstairs.” That voice was so loud and clear and distinctly not mine. I knew it was Him telling me to live for them. So I did.

You may not be surprised about the pain that people feel, but I also hear so much hope.

You have shared things like. . .

• So I’m here to encourage all of you to live. There can be joyous moments in between the pain.
• The point is, think of things that you are capable of doing, that you really enjoy, and do them! Don’t let your pain take over your life! Your pain does not define you
• Coping with a crisis is and probably always will be hard. But with a better idea of what helps me push through I have more confidence in my ability to survive just about anything. You can do the same by coming up with an approach that suits your needs and tendencies before you need to cope with your next crisis.
• I shared the hurt I felt and explained how I did not want to feel pitied or be a burden. My family and friends reached out and I opened my heart and let them in. Something happened, something magical that brought us each closer to one another.

It is so easy for illness to cut the confidence, attack our personality, and end relationships. Each of you have said in some way, “I can accept this illness without allowing it to define me.”

This year’s theme has been “Deep Breath, Start Fresh,” and throughout the posts and the comments, you have put this theme into eloquent words that express this in beautiful ways.

My deepest thanks for all the ways you have helped those with invisible chronic illnesses and hidden pain this week. You have stepped forward, crossed the comfort zone, and shared your heart and your hope and you have made a significance difference.

Lisa Copen is the founder of Rest Ministries and she lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? at the Rest Ministries shop.

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Featured Workshops Today: Working and Chronic Illness

If you are one of the millions of people who live with a chronic illness and yet you still get up and go to work every morning, you may find there is a lack of resources for your particular situation. Although you may feel as though you do not necessarily fit in with the career-oriented people who are healthy and not suffering from challenges on a daily basis, you may also feel that you do not specifically relate to those who are home a great deal of time and not able to physically work.

We have found some wonderful resources for you and you will discover that having chronic illness does not prevent you from also having an exceptional career. Although the career you have originally chosen may no longer be possible due to your situation and physical limitations, that does not mean that there are not thousands of career options that you may still choose from, a few which are likely to feel passionate about.

In fact, you may find that having a chronic condition may help you narrow in on your passions and what you enjoy the most, and thereby, make your career choice, an intentional one which can serve you in years to come.

Join us for a couple of workshops where we speak about careers and chronic illness and working well when chronically ill.

Are you interested in “Finding the Job You Desire and Can Do? Rosalind Joffe will be you through the process of looking at what your abilities are (and yes, your inabilities now) and how to go about choosing a wise career path that can work well with the and picked ability of your chronic illness, as well as those leadership skills you have mastered due to managing your illness effectively.

You will also hear from some people who have started their own business, such as Jennie Krogulski who is the founder of Hilton Head Nannies and works each day to best accommodate her career path as well as the daily difficulties with her chronic condition. 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. And Trish Robichaud is a Maximum Life & Healthy Relationship Coach who lives with multiple sclerosis & major depression. See Illness, Work, Career, and Starting Your Own Business

You also have the opportunity to hear from Lisa about starting Rest Ministries, the founder of Invisible Illness Week. She shares how she has Managed Chronic Illness and a Nonprofit Organization.

This year instead of having a live virtual conference we are featuring some amazing workshops from past years. You can find them all here on Blog Talk Radio or, if you use itunes, enter “invisible illness” under “podcasts” and then download them to a music player to listen to anytime. >More instructions here

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Featured Workshops Today: Communicating With Others

Communicating is a big deal when it comes to making some practical steps toward living with joy. We recommend the following workshops from past years.
“Helping Others Understand Your Pain” with Karen Lee Richards, a writer and patient advocate who works at HealthCentral and lives with fibromyalgia.

It’s OK to say NO: Building Healthy Boundaries” with Jenni Prokopy is a nice reminder that we are allowed to take care of ourselves. Jenni is the founder of chronicbabe.com and a journalist.

And “How You Can Help Those Who Help You” with author Jo Franz who lives with multiple sclerosis.

Times get tough when you are “Coping with Crises on Top of Chronic.” Join Jenni Saake (founder of Hannah’s Hope: Seeking God’s Heart in the Midst of Infertility, Miscarriage & Adoption Loss ) and Lisa Copen founder Rest Ministries, as we chat about surving crises in the midst of Chronic illness. Between the two of us, Lisa and Jenni have survived 45 years of multiple chronic illnesses including Chronic Fatigue Immunity Dysfunction Syndrome (ME/CFS), rheumatoid arthritis, fibromyalgia, diabetes, endometriosis, infertility, chemical sensitivities and more.

These women know that life doesn’t stop just because we are in pain. Hear us share our hearts and experiences through surgeries, infections, IV therapies, broken bones, unemployment, adoption journeys, and grief ranging from miscarriages to the deaths of grandparents. We will share a few survival skills for coping with the stress of everyday life when crisis hits.

This year instead of having a live virtual conference we are featuring some amazing workshops from past years. You can find them all here on Blog Talk Radio or, if you use itunes, enter “invisible illness” under “podcasts” and then download them to a music player to listen to anytime. >More instructions here

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5 Ways to Cope in a Crisis When Living With a Chronic Illness

Diana Lee

Taking a little time to come with ideas for how to handle a crisis is a valuable exercise for anyone living with a chronic, invisible illness. After all, to live with a chronic illness is to know that a crisis will come your way at some point. This list comprises the things I’ve learned about how to cope when life throws you a curve ball. As I’ve matured and had to learn how to deal with changes brought about by chronic illness, it has become easier and easier to cope with things I never thought I could handle.

(1) Breathe

By focusing on breathing I can keep myself in the moment and stop my brain from running wild with all the “what ifs.” It’s always the best place to start when something goes wrong.

 

(2) Focus on being rational and maintaining perspective

It’s in my nature to start flipping out during a crisis. It takes a concerted effort to keep myself thinking rationally. I do my best to keep reminding myself that I can handle whatever has been thrown my way and that freaking out does nothing but make me upset. The older I get the easier I find it to do this. I used to completely lose it and go into hysterical crying with any crisis. I still do that sometimes, but much less often.

(3) Lean on family and friends

In addition to my husband, parents, and closest friends, I’m part of a fantastic, close knit message board of women who provide the most amazing support both day-to-day and in a crisis. It’s like our own little Internet family. I don’t know what I would do without them. The online migraine and chronic illness community is an incredible source of support, too.

Discussing your situation with people who truly understand because they are living the same thing is amazing. Turning to other people also often helps me discover options and solutions I would never have thought of on my own.

 

(4) Ask for help

This is hard for me. I don’t like to need to ask for help. I want to be independent. But when push comes to shove sometimes it would be downright stupid to suffer silently when someone who loves you could do something to make things easier for you. Not everyone is lucky enough to have a supportive family or group of friends. Since I do, I should let them help me. They want to.

(5) Be kind to myself

I have a scary tendency to chastise myself for any part I think I might have had in bringing about a crisis. For instance, if I’d only tried harder I wouldn’t have lost my job. Never mind that I was dealing with three years of constant migraines when I quit working. It’s much easier to deal with a crisis if I can have compassion toward myself and remember that most crises are just a fluke rather than something I deserve for being a bad person.

In conclusion. . .

Coping with a crisis is and probably always will be hard. But with a better idea of what helps me push through I have more confidence in my ability to survive just about anything. You can do the same by coming up with an approach that suits your needs and tendencies before you need to cope with your next crisis.

About the Author: Diana Lee lives with chronic migraine disease, occipital neuralgia, diabetes, polycystic ovary syndrome and depression. She blogs about living with chronic pain, migraines and depression at her site, Somebody Heal Me, and interacts with other patients on Twitter, Facebook and Google+.

She is a licensed attorney, but is currently on disability because of the frequency and intensity of her chronic intractable migraines. She is married and mommy to two furbabies, Felix the cat and Maisy the Jack Russell Terrier. She loves reading, mindfulness meditation, watching college football and basketball, reality TV, laughing and being an advocate for other patients.

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Speak Out and Take This Survey on Invisible Illnesses and Hidden Disabilities

Laura Brydges, B.A.Sc., M.A., and Jennifer Martin, PhD, Industrial/Organizational Psychology have put together a survey about invisible disabilities and have asked those involved with National Invisible Chronic Illness Awareness Week to be involved!

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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Listen to Invisible Illness Week Workshops Any Time for Encouragement

Did you happen to make some of our podcast seminars during National Invisible Chronic Illness Awareness Week? We had some amazing guests as our panelists who contributed to a successful week of inspiration, information, and education.

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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How to Decide Your Career Future When Chronically Ill

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.

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The Invisible Woman

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’s Workshop 2 Parts [1] Invisible Disabilites [2] The Joy of Friendships

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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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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