What it is like to have an Adult Child with Fibromyalgia

When I started my website I forewarned my parents that I’d like them to write a little something about how they have felt having an adult child with fibromyalgia. I think hearing different perspectives are good for everyone. Below are some of my mom’s thoughts. Soon I will have my dad’s thoughts as well.

From my mom. . .

 

Like all parents, we are so very, very proud of Felicia. We love her dearly. Yes, she’s the apple of our eyes – and The Helpful Hubby is the best son-in-law any parents could have. Well enough of the good stuff – now for the unexpected. Felicia has handled fibromyalgia better than I thought was humanly possible. Maybe receiving the diagnosis when a busy student at a large university is the time to get the crummy news. She couldn’t stop, she didn’t have too much time to reflect, and those papers and exams were always calling for attention. (I’m sure not a minute was wasted.)

 

Felicia’s diagnosis took about a year. She had not kept us “up to speed” about the number of different doctors but in an efficient fashion, we got the explanation, “don’t worry, don’t come up, there’s no cure.” Anger and fear weren’t really my feelings, more: sadness for my “baby,” “Ick, how can I help Felicia, maybe it’ll go away if it’s sort of a chemical imbalance.”

Mainly I wondered about her ability to conquer her courses and what, if any, adjustments the university would/could make. I wondered if she would get so bad that she would be confined to a bed. Then Felicia brought home a fairly technical book. I read most of it. She’s been bringing home reading material ever since. I’m not quite so ignorant about fibromyalgia now.

We still really want to help Felicia but, that is hard to do, especially with her living out of state. Always my first instinct is to wrap my arms around her and just hug tightly for a really long time—maybe hours. Well, with fibro, that’s not a warm, cozy feeling for her to say the least. I can’t say, “It’ll get better,” because it may get worse before it gets better. I want to bake goodies, but know I’ll be chastised because she’s trying to eat nutritiously. Since I live far away, I can’t run over and do the laundry or dusting. She’d probably love it if I’d fly out for seasonal gardening though. I’d like to baby her in many ways, but that doesn’t make her fibromyalgia get better, it doesn’t help Felicia deal with life better, it just makes Mom feel better.

Felicia, my husband, and I talk frequently. Felicia and her father have a very special, loving relationship. Mostly I whisper little prayers throughout the day. We try to support both her and The Helpful Hubby in any way we can from a long distance.

Generally when I see or talk with Felicia, the first thing I do is figure out if it is a good or bad day. When I can visit her, usually her general posture or eyes tell me, but sometimes it’s the braces, compresses, or verbal warning of, “don’t touch me.”

I hated during my pregnancy when everyone else thought it was the only topic to talk about. So, if Felicia wants to talk about fibromyalgia, I’ll talk, but I don’t make it the core of every conversation. Felicia is so much more than this condition. She is a vibrant, interesting, creative, intelligent, compassionate, and humorous woman who happens to be dealing with a lot of pain.

The major way I see her coping with fibromyalgia is through determination. If she says she is going to do something, it will be done. It will be on time and correct, and with bells and whistles, when appropriate. She has been the family organizer since age 4.

She tries to stay positive. It drives her crazy when people don’t even try to be pleasant when dealing with the public. Felicia is not one of those obnoxious cheery people. She wakes grumpy, gets headaches, has fibromyalgia; but she looks for ways to make things better, she doesn’t dwell on the spilt milk in life, and somewhere she has learned to make lemonade from the lemons life gives her.

Felicia monitors her activities. She is a really good planner. She will space steps out so that everything isn’t left until the last minute. Although she deals well with crisis, she hates being put in that position due to others poorly made plans.

Felicia uses tools that help make household chores easier. One, not-so-obvious “tool,” is being organized. She claims that everything in her house as its own “home.” She can tell someone exactly where to find almost any item in her house. This is helpful for others when they are trying to help her – no need to search around for items or feel badly asking where something is.

She researches fibromyalgia, reads books and articles, searches on-line, and learns continually. She is active in local groups, and of course she started her website and tweets. She really believes in a place for positive examples of people living with fibromyalgia. She hopes to be a banner of information for most, a shared moment for many, and a ray of hope for some. As her mother, I want her to succeed. As a person, I want you to succeed too. May this find you making progress which will lead to your good day.”

About Felicia: “I’d like to think that everything that I do in life is done with passion. To me it’s not worth doing something if you don’t believe whole-heartedly in it! I enjoy photography, flowers, baking, traveling and bicycling and am an active volunteer with my local Arthritis Foundation office. Everyone who knows me also knows my favorite color is purple. I started my Felicia Fibroblog in hopes that I would be able to create a community where people with fibromyalgia and other medical conditions relate. I planned to share resources I have found to be helpful as well as my own personal tips and tricks. I am lucky enough to know a few other ladies with fibromyalgia and will sometimes share their experiences as well.”

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“You Look So Good!” To Wear Make Up or Not?

Michelle Williams

Makeup can cover a multitude of defects; including some of the signs of our illnesses. I notice that when I wear makeup not only do I look better, but my demeanor changes as well. Makeup seems to be a little pick-me-up in the way I feel about myself, even if it is for a short time.

I realize that it may be a sign of vanity; that we should embrace what God has given us. I believe I am just enhancing what God has given me. What I mean is that I am just covering up the imperfections the many years of chronic illness has left behind and shining forth the image that God has originally created.

At the same time I also notice that people will treat me differently when I am wearing makeup. When I wear makeup I look healthier and in so doing I will get the old, “You look so good–you must be feeling better!” Don’t you just wish they would stop at, “You look so good”? When they add the other you feel like you need to explain yourself. “Thank you, but makeup covers a multitude of flaws. I really feel. . .”

Even my doctors will say something like that if I wear makeup to my appointments. When I don’t wear makeup to my appointment the doctor will ask if I am depressed. I will tell him, “No, I just want you to see how I feel as well. The yellowish complexion, the blotchy rash on my face and nose, the dark circles under my sunken eyes, the multitude of colors in my complexion. . .“

No matter what people may think or say, I wear makeup more for me. I seem to feel better about myself. I know it is just camouflaging the outward signs of my chronic illness, but at least every time I pass the mirror the multitude of times I have to go to the bathroom each day, I don’t have to see those many imperfections that my illnesses have left behind.

If wearing a little bit of makeup each day gives me a little pick-me-up then so be it. I just wish people would just stop at, “You look so good!”

About the Author: Michele Williams lives in a beautiful mountain community in Pennsylvania with her husband of 37 years who is a Pastor and Teacher at a Christian school. They have a grown daughter, son-in-law, teenage grandson and three furry children. Through the years the Lord has called them to various ministries in the United States where Michele has been involved in all aspects of church ministry in addition: Pastor’s Wife, Child Evangelism, Regional Women’s Ministry, Wellness Ministry, Speaker, Counselor and Writer.

Michele has experienced various life challenges including living with multiple chronic illnesses since 1985. Some of those include: fibromyalgia, osteoarthritis, peripheral neuropathy, interstitial cystitis, IBS, chemical sensitivities, asthma, sleep apnea, and treated for SLE lupus (among other illnesses). She enjoys encouraging and informing others through her blog: Beelieve You Can!, http://www.beelieveyoucan.net

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Seeing Beauty Through Our Pain

Kristina Schwende

I have not blogged for a while as I’m going through a very bad flareup. I have spent most of the past two weeks on the couch or in bed with an ice pack on my face. Today the sun was shining and I forced myself to go for a walk. I brought my iPhone with me as I love listening to Joyce Meyer when I’m out and about. I did my long walk very s-l-o-w-l-y. This allowed me the time to really look at the beauty around me.

I moved to British Columbia back in the ’80s because of the incredible beauty of the region. I vowed that I would never take it for granted. However, being in pain can sometimes cause my world to become so small that I don’t see the beauty around me. So today I took the time to enjoy it and captured some of the images.

When was the last time you looked for the beauty around you?

Have you let your pain block it all out?

We must remind ourselves again and again that there is more to our life than our pain. We can still find moments to enjoy. Do you enjoy photography? If you are able, look around your house or your street. Find the beauty right outside your front door. Do you enjoy music? How about taking the time to really listen to it– how each instrument blends with the other to create a beautiful melody. Are you a computer geek like me? Seek out things that you truly enjoy, maybe start your own blog!

Enjoy the people around you. Let them help you or see how you can help them and others. That’s why I started my own support group. I wanted to take take the focus off myself and turn my pain into something good.

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! That is why I tell people I struggle with Complex Regional Pain Syndrome. It sounds so much better then “I suffer from. . .”

Struggles can be overcome; Suffering is a choice.

Do you believe that last statement?

Do you honestly believe that suffering is a choice? Have you ever seen two people deal with similar issues but one is smiling through it all and the other one is complaining constantly? I have a dear friend who struggles with multiple sclerosis. She is the most positive person I know. She has completely accepted her condition and lives her life with pure joy–because she chooses to!

I will be the first to admit that I have problems with this concept. There are times (like in the past couple of weeks) where I find it so hard to find the joy in my life. But then my husband says something hilarious and we giggle like little kids. Or I look at the people I have met because of my journey through pain–wonderful people I would not have met otherwise.

Yes, beauty can be found through our pain, but it is a choice. I pray that you choose to find the beauty in your life today.

About the Author: Kristina Schwende was diagnosed with Complex Regional Syndrome in 2008. Since then, she has run the course of multiple painful examinations, tests and scans of every kind, and two pain management clinics. Through all this she has learned that stress plays a major part in her pain levels. She is also learning how to set healthy boundaries and pacing her activities. She founded Chronic Pain Warriors, a Christian support group, and will be starting a book study on how to set boundaries in September. Kristina is passionate about bringing chronic pain to the forefront and wants to ensure that no one suffers through their pain alone.

Popularity: 7% [?]

Am I Too Invisible For Accessible Seating?

Katina Stapleton

Like many people with lupus, I don’t look sick. This becomes a challenge when I try to use services set aside for the disabled, such as the designated seats on public transportation. Every day I ride a commuter train to work in the District of Columbia. The train is often jammed with commuters and I have to stand. Usually, my legs feel perfectly fine and I can stand all the way into DC, about a 35-minute ride. But if I am having a flare, my legs sometimes feel like someone has hit them with a car. On those days I really need a seat.

One day I got on the train with my legs feeling a hot mess. So I sat in the accessible seating area and rode the train until we reached a stop where someone in a wheelchair was being helped on the train by the conductor.

Right across from the aisle from me (also in a wheelchair accessible seat) was a guy who walks with a cane. “Cane Guy” started waving at me to get up and move even though 1) the wheelchair could have just as easily replaced Cane Guy’s seat as mine, and 2) the woman in the wheelchair was still being helped onto the train. Cane Guy just kept waving at me and I started to feel uncomfortable, like I had done something wrong.

Finally, I walked up the flight of stairs, and found another seat.

It was very surreal for me because I give up my seat all the time for people with wheelchairs when I am feeling well. But that day my leg hurt and I felt a wave of disgruntlement, especially towards Cane Guy. As I limped up the stairs, I thought to myself: “My leg hurts! Bad! Why did I have to move? I have just as much of a right to sit on the ground floor as you do, Cane Guy! Does your leg hurt as much as mine?!”

I got even more upset when I realized that not only was Cane Guy still sitting in the accessible seating area, so were four other people who could have moved instead of me.

I have never felt more invisibly ill than I did at that moment.

To Cane Guy and my other seatmates, I probably looked like a perfectly healthy person who should have been willing to give up her seat without question. After all, I did not have a health challenge that they could easily see.

At the moment I gave up my seat, I couldn’t think of what else to do besides refuse to move and create a scene. After all, the woman’s wheelchair did have to go somewhere, and my seat was one of the two best options (Cane Guy’s seat was the other).

What was I supposed to say? “Excuse me, I may look healthy (and fabulous), but I am really an invisibly ill person who is having trouble standing and navigating stairs. Can one of you move instead?” Well, actually, that is what I should have said, but I didn’t think of it until I had already moved and was mad, mad, mad about it.

As I stewed in my seat, I decided while it was too late to say something to Cane Guy, it wasn’t too late to say something to the conductor. So when I got off the train, I waited to speak to the conductor and told her I had felt pressured by Cane Guy to give up the seat I really needed.

She was actually quite kind, but noted that there was no visible signal (like a wheelchair or a cane) to indicate that I also needed the accessible seating. While I agreed with her in principle, I wondered if this could have all been avoided if there was some way that I could indicate being “physically challenged” without having to tell my entire health history on a public train.

While I love blogging about living with Lupus, I have no desire to tell my fellow commuters about it just for an accessible seat!

I finally came up with a future option that strikes the balance of providing information without over-sharing. If someone asks me to move for a wheelchair and I am not up to it that day, I will simply say: “Can someone on this level switch seats with me? I don’t mind moving for the wheelchair, but because I have a disability I also need a ground-level seat.”

About the Author: Dr. Katina Rae Stapleton was diagnosed with lupus as a teen. She has never let the disease stop her from having a full, fabulous life. After graduating from college, she went on to earn a doctorate in Political Science from Duke University where she specialized in the study of the intersections between politics, the media, and popular culture. Today, Katina is dedicated to empowering other people with lupus to follow their dreams. Her blog Butterfly Lessons: Living a Fabulous Life with Lupus shares personal stories, practical advice and resources with the lupus community. She can reached on Twitter as @ButterflyLesson and by email at Katina@KatinaRaeStapleton.com.

Have you ever been in a similar situation? How have you handled it, or how do you wish you would have handled it?

Popularity: 13% [?]

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.

Popularity: 9% [?]

The Little Things We Take for Granted

Stacey Chillemi

At eighteen, I was issued a license that right of passage so important for a young person striving for independence and autonomy. Since I have epilepsy, I was even more excited to get my license since I always felt different from the other kids and that I had something to prove. Now, the gap was closing and I was just like all the other teenagers, one of the gang, the cool girl in school with a license.

Picking my friends up and driving to the mall quickly became a ritual. We shopped until we dropped and enjoyed every precious moment. We helped each other pick clothes, buying like crazy until our wallets were empty. The morning after a shopping spree would find as at one or the others house, helping each other get into our new pants that we purposely bought two sizes smaller.

One of us would get on the bed and the other two would help pull up the pants. I can still hear Marie yelling at me to stop breathing and hold in my stomach!

No new purchase was sacred; we swapped our new clothes and could make three new outfits look like ten. As our closets grew, so did our friendships. We bonded, shopping being the experience that brought us closer. No matter how different we each were in personality, we all had a love for shopping in common.

At 19, everything changed one day

At nineteen, life changed, as you would expect, it should for a young woman about to become an adult. Only my change wasn’t typical.

While I was driving with my boyfriend (who is now my husband) on a winding, country road in New Jersey, I suddenly went into a seizure. My muscles tightened, my arms curved to the left and my foot went all the way down on the gas pedal.

Our future together flashed before us as the car headed straight toward a telephone poll. Fighting me for the wheel was worse than fighting a boxer or wrestler. I had no control and while in the throes of the seizure, I had the strength of a couple of bouncers.

Finally my boyfriend got control over the car, steering it safely away from the pole and bringing it to a stop.

By then my seizure had passed and a new era in my life began. An angel was watching over us and spared our lives that day, but my license was revoked and my days at the mall became fewer and more difficult to arrange.

I never expected that not being able to shop whenever I desired some retail therapy would have such an impact on my life, but it did. I became a prisoner in my own home, no longer able to hop into the car and go to the mall, to Dunkin’ Donuts for a cup of coffee or Blockbusters for a video. I was at the mercy of other peoples schedules.

Grieving the loss of freedom

Not one to ask for peoples help, my isolation became chronic. I felt very alone. I was a strong, independent person and I wanted to take care of myself. I wanted to be that successful woman working in New York, shopping her heart out after work then going to the bar to have enjoyed an evening martini with friends. But that ideal wasn’t realistic; my dreams didn’t seem to have a chance.

My confidence was shaken, my self-esteem at an all time low. How was I going to be a success? I had epilepsy. Where was my life going? What was my purpose? I was depressed, hiding from the world and feeling hopeless inside. Afraid to tell others how I felt, I was trapped.

Having the freedom to choose where, when and how you want to go somewhere is something we all take for granted. I didn’t realize how my shopping helped me until it was out of reach. Going to the mall had allowed me to focus on all the pretty things and my old wounds took a back seat to the pleasure of shopping.

Searching for acceptance of my condition

As time passed, I began to accept my disorder and the consequences it brought along with it. I learned to accept the limitations in my life. We all have them. We all need help sometime or another. I finally broke through the wall that had become my prison and I began to heal when I sat my family and friends down, opened my heart and let my feelings and emotions pour out.

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.

I can still shop!

There’s no substitute for the fun I have with my girlfriends on a day at the mall. However, the wonders of technology have opened up the world and I have become an avid internet shopper. Shopping, in every form will always be my escape, a pleasure that helps keep old wounds healed and brings peace to my soul, much to the chagrin of my husband-and to the delight of my neighbors who speculate about what’s going on between me and the UPS man.

About the Author: Stacey Chillemi graduated from Richard Stockton College in Pomona, New Jersey, majoring in marketing and advertisement. In the mid-nineties while in college, she began her first book, Epilepsy: You’re Not Alone. It was published six years later. Before and after graduation in 1996, she worked in New York City for NBC. Since the birth of her children, she has been a freelance journalist. She has written features for journals and newspapers. Her articles have appeared in dozens of newspapers and magazines in North America and abroad. She won an award from the Epilepsy Foundation of America in 2002 for her help and dedication to people with epilepsy.

Popularity: 7% [?]

Discovering A New Normal

By Keri Delphia

With Invisible Illness Week right around the corner it has had me thinking what my life is like living with an invisible illness. For me it has been trying to say the least.

I, like so many others who I have talked to, was a perfectly healthy, full-of-energy, lots-of-stamina, wife, mother, and business woman– until one day all of that changed.

When I say “one day” it seemed as though one day I was fine the next my whole world was changed. Not only did it change my life, but it changed my whole family’s life. The wife and mother they knew who coudl– and would–do anything they needed, was now too tired, in too much pain, or mentally couldn’t remember small details that were so important to them.

Here we are six years later and I sit here trying to make this make sense with as few words as I can I can say: I have the utmost certainty that God’s Grace, Mercy and Love, has walked our family through this Journey. It has not been easy. Lot’s of doctors’ appointment, lots of disappointment in trying to find answers. And trying to learn a new normal in our lives.

I think the hardest thing for me was admitting there was something wrong with me and listening to my body; Not worrying about what people were thinking about me.

When you look normal on the outside, meaning you show no outward signs of being sick, you know that people have a hard time understanding or having sympathy to your illness. This is something that I know first hand. I was one of those people.

That I know is one of the things that God wanted me to learn through my own illness.

My family has learned a new normal. We all understand that it may have to be adjusted day by day, but communication and honesty about how I feel is a huge key it keeping a peace around our house! No matter what God is with me always and with Him I can do all things! Maybe not the way I used to, but by His grace I find a new way!

Keri Delphia is a very social person who loves to be around people. She began her career as a hairstylist in 1987 and was passionate about it until she was no longer able to do it in 2007. Now she manages a hair salon part time and enjoys sharing her knowledge with the stylists that are just starting their careers. She has been married for 16 years and has two boys 19 and 9! They are a true joy in her life! She also has 12 chickens and 1 Rooster–quite a hoot and she loves the fresh eggs. She lives with Thalamic Pain Syndrome and has been suffering for 5 years now, but it has just been recently that she was diagnosed. Visit her blog, Pain Free Journey for more writings such as this.

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Finding My Voice — To Sing Despite Chronic Illness & Pain

This may seem like a non sequitur, but I think people who can sing are really cool. My best friend is a singer, and when she cuts loose the sound is so beautiful it sometimes brings tears to my eyes-not just because she hits the right notes, but because she seems so natural, so comfortable, so confident.

When I think of the people who inspire me most, most are singers: Björk, Natalie Maines, Madonna, India Irie, Lady Gaga, Natasha Bedingfield… I could go on and on. It’s not just the gorgeousness of their voices or their awesome vocal technique; often, it’s about their message, and how I feel it through the music. They’re so, well, free. And powerful!

So I decided to take a singing class. I talked about it for a while, and I procrastinated because I’m nervous about performing in front of people. I kept singing in the shower, listening with a way-too-critical ear. Then one night, two people I’m quite close to surrounded me, shoved a class schedule from a local school in my hand, and basically forced me to sign up. That’s my story, anyway.

The first class was the other night, and I was really nervous. Turns out, some other students were WAY more nervous than I. Watching each person perform a few notes was fascinating; some people were clearly freaked out and giggled nervously, but others sang with confidence and ease. One woman sang when she wasn’t supposed to, and her voice was beautiful; she got embarrassed about missing her cue, but I thought she was fantastic.

Which brings me (in a roundabout way, I know) to you, Babes. We sick folk often lose our voices. We get shy, afraid to sing out in a crowd and let our opinion be heard. We get embarrassed, feeling like people hear us complain all the time…so why should we keep making noise? We feel something deep within but we get bogged down in how we think other people view us, and we’re afraid to speak up. We’re afraid to sing.

But just like that woman in class the other night-the one who sang out of step with the group but sounded marvelous-we have to get over our fear of staying in line with everyone else and learn to just BELT IT OUT! What we have to say is meaningful, valuable and beautiful. And while we may feel rusty at first, I know that with a little practice we can sing a tune that moves others to action.

Maybe you just use your voice on your own behalf, make a plea for help that is finally heard because you articulate your needs (symptoms? frustrations?) clearly and authoritatively. Maybe your voice soars over the crowd, reaching hundreds or thousands through a blog in which you tell your story and show others how to be strong.

Maybe your voice inspires your family and friends to learn more about your illness, or advocate for you or others. Maybe your voice will be so beautiful and strong that you reach another ChronicBabe who feels alone, who needs to be inspired to find her inner strength so she can start to feel better. Maybe you can change her life.

Once you start singing, who knows what could happen? I used to be afraid to speak up and use my voice to advocate for my own needs; the idea of speaking out on behalf of others, in the face of disbelievers or critics, seemed crazy. And look where I wound up, Babes?! On TV, in newspapers and magazines, on the radio and here on the internets, raising a ruckus on behalf of ChronicBabes everywhere. You can do it, too! Even if it’s just for your own sake, sing out. Make your presence known. I can’t wait to hear your voices!

Until then, I’ll keep singing in the shower. And in the classroom. And walking down the sidewalk. And to anyone who will listen.

Jenni Prokopy is founder and 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.

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“You’re not alone. I have a pebble, too.” The Invisible Illness Experience

Andrea shared the following in the Meme “30 Things About My Invisible Illness You May Not Know.”

People would be surprised to know. . .
That on the days when you ask what I have done today and I reply glibly with “Oh, a little gardening, a little reading, a little knitting…” and you think how spoiled she is, how lazy… What I am not telling you is that those days are the ones filled with pain to the point where I cannot stand to move, to stand, to sit, or even to lie down. I go out in the garden and let the touch of the plants be a sort of meditation, grounding me to my surroundings and reminding me that I am but a tiny piece of the glory that is our universe. I read as an escape from my current reality of agony, and as a distraction, and as a pleasure in the midst of pain.

And when that escape is no longer working, I knit, to keep my hands from clawing at the ants buzzing around under my skin, and to keep my mind busy enough with knit three purl two that it won’t get lost in negativity.

I think people would also be surprised to know that pain doesn’t have to be an excruciating pain to have a profound effect on your life. If you want to know what it is like to be in my body, try this for a while. Add a pebble to your shoe. It isn’t much, really, just a little thing. An aggravation in your shoe. I saw a campaign on the web that suggests putting a clothespin on your finger and seeing how long you can stand it. At first, it is a minor pain. An annoyance, really. An irritation. An aggravation, perhaps, if you succumb to anger.

But after a while, the pain dominates your thinking if you let it. All you can think about is how long until I can take the pebble out of my shoe. You start trying to walk differently, trying to avoid the thing that causes pain, but then other parts of you start to ache because you aren’t using your body the way it is supposed to be used. So you go back to walking normally, pretending the pain doesn’t exist. You walk slower, but when that doesn’t work, you walk faster. You buy better shoes. You lean on a cane for a while. You take Tylenol, and Advil, but the pebble is still there. You try hopping. You try crawling. Still a pebble. Mind over matter, you tell yourself. Meditation. Breathing. Hypnosis. And a pebble, still in your shoe.

“You don’t have acute pain, you don’t need strong drugs,” the doctor tells you, and you can see him thinking don’t you know there are people who are in serious pain out there? Stop whining. “What’s the matter with you?” your boss asks, “Your mistakes are costing me money!” and you want to scream can’t you see the pebble? But of course no one else can see it. Most don’t even believe it is there, not all the time. It couldn’t possibly be. Those who do believe don’t understand why you don’t just take a Tylenol and make it go away, like they do with a headache. Pain is conquerable, after all. We have the technology, they say. Because the alternative is too scary to contemplate: What if the pain never goes away? What if I’ll always have a pebble?

When I see someone struggling with a pebble, I want to hug them and say “You’re not alone; I have a pebble, too.”

It won’t make their pain any less. But it will make it less frightening. Less lonely. Hopefully they will begin to see all the things they can do in spite of their pain, rather than all the things they have had to give up against their will. Hopefully they will see that, in spite of the pebble, they can still be the kind of person they want to be. That, even with a pebble, life is still good.

–Andrea at Kids by Hand

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This is Where The “Healing” Begins

Pam shares on her blog, The Journey Leads Home, “In preparation for Invisible Illness Awareness Month I thought that this video by Tenth Avenue North would be appropriate for the entries I will be making in the days ahead to bring awareness to those of us with an Invisible Illness.”

Pam is a 43-year-old stay-at-home-mom (SAHM) who has been married for 23 years to her college sweetheart. They have two children; a boy 16, a girl 15. She says, “I battle fibromyalgia, IBS and depression every day. I thought parenting with all of that was difficult until we hit the teen years. How do I do this?” Visit her blog, “The Journey Leads Home.”

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