Why I Blog About My Life with Chronic Illness

Me, blogging from my couch

I haven't thought about this subject for quite a while, but I am writing about it for a good cause.  When I am done, I will be submitting this post to a blog carnival over at Restoring Quality of Life: the official blog of the Partnership for Palliative Care.

I've done so much sharing here for over 6 years now.  While I was a bit hesitant when I first started, I honestly don't give this topic a second thought anymore.  In fact, when I'm not able to post as often as I would like, I actually feel like something is seriously missing in my life. And from comments I get, I know my readers miss me too when I post less frequently!

So with the power of hindsight behind me, I put my thinking cap on and uncovered 3 main reasons why I continue to share my struggles with chronic illness so publicly. 

Reason #1: To Connect with Others

Ten years ago, I was a very outgoing and social person.  I loved going out with my friends to concerts, dance clubs, restaurants and the movies.  I loved going shopping all by myself for hours at the mall.  I bowled with my hubby in 2 leagues at our local alley, meeting many new friends.  I was someone who didn't mind driving all around town to meet up with friends and visit interesting places!

Ten years ago, I was a clinical social worker with 11 years work experience.  I worked full-time and I interacted with lots and lots of people every day.  At my last position, I even volunteered for the events committee, planning workplace parties and other fun activities with and for my co-workers.

Then 2004, a trip-and-fall accident resulted in the chronic pain and fatigue of fibromyalgia, which took all of these things, and more, away from me. 

Now, leaving the house to do something fun with my hubby or friends is like running a marathon.  It makes my pain worse, it disrupts my fragile equilibrium and it often pushes me beyond my limits.  The unavoidable increase in pain and fatigue makes me feel physically awful and mentally anxious and irritable. In those moments of increased symptoms, I find myself cursing my chronic illness for the devastating effects it has on me.

So I decided to start sharing stories about my life with chronic illness through a blog and on Twitter.  Like a fisherman's net, I threw myself out there to see if I could connect with anyone.  And through the magic of the Internet and the act of sharing my thoughts, feelings and experiences in a search engine friendly format, I attracted others to my blog and Twitter account.  Over time, my posts and tweets became my ticket to the online chronic illness community. 

And just like that, I started meeting new people and being social again in ways that fit with my "new" life.

Reason #2: To Share the Illness Experience

When I began my "new" life with the chronic pain and fatigue of fibromyalgia, I wasn't quite sure what to do.  Initially, I looked to my medical providers to diagnose my illness and prescribe some kind of treatment that would get me back to normal.  As the weeks turned into months and the months turned into years, it started becoming clear that my doctors were going to be able to fix me. 

Thinking back to my cancer experience 16 years before, I realized that to live my best life with chronic illness, I was going to need the support, wisdom and guidance of other people living with fibromyalgia and chronic pain to help me figure out what to do next. 

In 1988, I was lucky to find a young adult cancer survivor group after I finished my leukemia treatment.  They helped me make sense of my cancer experience and find the strength and courage to put my life back together after it was so completely disrupted.  I learned that sharing about my illness with other people helped motivate me to turn life's lemons into lemonade.  And listening to the stories of others in similar situations to my own, about their struggles and successes, helped me to accept and master my own illness experience.  Positive peer influence and support for me are magical, life-affirming gifts.

So with this new challenge facing me, I started looking for an in-person support group.  Much to my dismay, I had no luck!  Then I realized that if other people living with fibromyalgia were like me, attending a weekly support group might be a nearly impossible task. 

Then a "healthy" friend introduce me to blogging, Twitter and Facebook.  Wanting to make new friends and new connections, I drove in and gave social media a try. 

Six years later, social media is a permanent part of my life.  I've learned how to ask for support and, in return, give support to others in these virtual groups and forums. I simply can't imagine my life without this unique way of sharing my illness experience.  I feel I am truly part of a community that is accessible, convenient and, most of all, caring.

Reason #3: To Give to My Hubby and IRL Friends Some Downtime

This might seem strange, but having multiple sources of support in my life not only makes my life better, it makes life better for my hubby too.  Because let's be honest: the people who live with us and/or interact with us the most really need to have a break from us and our chronic illnesses every now and again. 

Being the social person that I am, it is in my nature to want to share everything with my hubby and my friends.  I'm not shy about asking for a compassionate ear when I need a little understanding, empathy and support.  But since the illness I am dealing with is chronic, i.e. an illness that I will live with for the rest of my life, there is a real risk of burning out my support system from overuse.  I care about my hubby and my friends too much to let that happen.

With support needs that are sometimes big and definitely ongoing, I know I need more than just a few people "in real life (IRL)" to lend me an ear when I need one.  Thankfully I've found the extended support network I need in the virtual communities that social media is able to create and support.  I can access this support any time, quickly and easily, through my computer or smartphone.

Final Thoughts

As with all things in this life, social media isn't perfect.  I've encountered misunderstandings, miscommunications, hurt feelings (mostly unintentional), meltdowns and even the occasional fight.  Social media can be intimidating at first and there is definitely a learning curve.  I found it easiest to observe more and interact less at first, a.k.a. be a lurker.  But since most of the rules are literally unwritten, I found the "watch and learn" approach worked best for me.

That said, for the most part, I've found the chronic illness community to be wonderfully polite, supportive, accepting and caring.  But then again, most of us participating in this community have a shared purpose: to live our best lives despite chronic illness.  I think this really helps keep the conversations and interactions focus and helpful.

Now if only I could find a way to meet all my lovely new friends living with chronic illness in-person!

When the Going Gets Tough for the Chronically Ill

We all know the saying:

When the going gets tough, the tough get going.

But when you live with chronic illness, I think a more fitting revision might be:

When the going gets tougher, the tough disappear.

At least that's how it seems to me, especially when I look back at my own blog archive from the last year.  When I started Hepatitis C treatment in February 2012, things got really tough.  So I compensated by temporarily letting go of a lot of the things I love doing, like blogging and container gardening, to focus on my health.

Thing is, I've noticed that this happens to my chronically awesome friends too.  I visited the blogs of a few sick friends the other day and saw that they too have been absent.  From the few posts one friend was able to publish, I learned that her life is undergoing several major upheavals all at once.  I saw that she is posting as often as she can.  As much as I want her to keep sharing her story, I know her capacity to deal with life right now is overtaxed and her blogging must take a back seat.

The truth is, when you live with chronic illness, you lose your ability to do a lot of things.  Heck, there are days when I can't properly focus on getting just one thing done!  I often think doing is for healthy people.  Some days just being is all I have the energy to do.

But those of us living with chronic illness already get this.  So why am I writing this post?  Because I'm sad that our voices seem to fade out when things get really bad for us.  Our stories stop being told at the exact moment when the need to talk scream about what is happening is so much greater.  Which makes me frustrated, because when we get quiet, it seems like the healthy people in our lives don't notice that we are getting swallowed up by our tough health battles and could really use their help.

Call me cynical, but the only help I see us sick friends getting is that weekly reminder to church-goers to pray for the sick and elderly. (They still do that, right?) The rest of society is geared towards the able-bodied, so we aren't getting much help there, are we?

But we need much more than prayers.  Our lives are so much better when 1) we have healthy friends and family sharing positive interactions with us on a regular basis and 2) those folks can offer us some support and assistance, or arrange for it, when we really need it.  Unfortunately, too many of us don't have these positive interactions with healthy friends and family.  Even when we are surrounded by healthy people, those folks sometimes chose to tune us out instead of help us out.

We know that the fundamental truth is that it's hard to be sick. And we are faced with another fundamental truth: it's hard for healthy people to truly comprehend what it means to be sick and sometimes it's even hard for healthy people to just be around sick people.

Here is a quote I think pretty much sums up this problem:

People think they know you. They think they know how you’re handling a situation. But the truth is no one knows. No one knows what happens after you leave them, when you’re lying in bed or sitting over your breakfast alone and all you want to do is cry or scream. They don’t know what’s going on inside your head—the mind-numbing cocktail of anger and sadness and guilt. This isn’t their fault. They just don’t know. And so they pretend and they say you’re doing great when you’re really not. And this makes everyone feel better. Everybody but you.

~ William H. Woodwell Jr.

Now I feel bad that I have taken up so much of your time eloquently defining this issue when I don't have a solution to it, at least not yet.  But then again, perhaps the solution comes when we all start talking more about this, rather than letting healthy people go on assuming those of us living with chronic illness are "doing great."  Because let's be really, really honest--even on our "good" days, we aren't anywhere near to "doing great."

My goal is to live life "as well as possible" each and every day I live with chronic illness.

How does chronic illness impair your ability to tell your story? When health battles overwhelm you, do you get the support you need from the healthy people in your life?  What are your ideas on bridging the gap between ourselves and healthy people?

Lists of 3: Thankful, Excited & Inspired #Listof3 #NHBPM

3 Things I Am Thankful For

1. My husband who loves and supports me no matter what.  We have so much fun together and we are truly each other's best friend.  He works hard to keep a roof over our heads, food on our table and our bills paid.  
2. All the friends, family and supporters who helped me get through 24 weeks of Hepatitis C treatment.  I could not have done it without you.
3. The knowledge that chronic illness can't bring me down, break my spirit or rob me of the joy that comes from living my life.

3 Things I Am Excited About

1. Getting back to digging in the dirt, planting seeds and watching things grow in my container garden...and then writing about it over at The Seated Gardener.
2. Now that I am starting to feel better post-Hep C treatment, I'm excited about having more energy to do more fun things with my hubby and friends.  It's definitely time for a vacation!
3. I haven't had a chance yet to really test out my hands since dual carpal tunnel surgeries in 2011.  I'm excited to find out if I can do more now that the numbness and tingling in my hands has gotten better.

3 Saying I Am Inspired By

1. Never let the odds keep you from doing what you know in your heart you were meant to do. ~H. Jackson Brown, Jr.
2. Even bad days have happy moments.  Look for 'em! ~Karen Salmansohn
3. I have come to believe that caring for myself is not self indulgent.  Caring for myself is an act of survival. ~Audra Lorde

See more inspiring sayings here on my Pinterest Inspiration board.

Remembering My Cancer Treatment Supporters

Starting Hepatitis C treatment has brought back memories of my cancer treatment experience.  Would you be surprised to hear there are actually some parallels?  Thankfully there are also so big differences too...

Most of all, it's the people who touched my life back then that I remember the best.  Even after 24 years, the feelings of love and nurture from people who went out of their way to support me during my eight month battle with cancer continue to live on in my heart.

Just the other day, I remembered Mrs. N, a family friend, who sent me a letter every time I was admitted to the hospital to start a new round of chemotherapy.

Mrs. N was my younger sister A's piano teacher.  She was also friends with my mother.  I can remember going to Mrs. N's house to pick up my sister and sitting in her living room listening to them play the piano as they were wrapping up their lesson.

Now one of Mrs. N's daughters had had cancer a few years before me--I believe it was Hodgkin's disease, now called Hodgkin's lymphoma.  Her daughter J had gone to the same high school that I had, but she was several grades ahead of me.  So when I was diagnosed with leukemia, I asked my mother if her daughter would come visit me in the hospital and share with me her story of cancer treatment.

Looking back, I sensed that J didn't feel like she helped me all that much.  It was difficult for her to share her memories of her cancer treatment and probably even more difficult to be in a hospital visiting a cancer patient.  But J was living, breathing evidence that a young adult could be diagnosed with cancer and survive...and that was exactly what I needed in that moment.

As for Mrs. N's letters, they always cheered me up.  She must have gone to Aahs!, a local card and novelties shop here in Los Angeles, to purchase these crazy envelopes with messages like "Urgent: Your STD Test Results Enclosed."  I know she did this to make me smile.  Then inside the envelope was a letter with words of encouragement and hope that always made me feel good.

The part the made me laugh is that she mailed these envelopes to me at the hospital!  Can you imagine what the people in the hospital mail room thought when they saw a letter for a patient in an envelope like that?!?  Ha, ha!

It's wonderful people like Mrs. N that gave me the inspiration to invite you all to be a part of my current cheering squad.  Mrs. N passed away almost 10 years ago and I am not sure that I ever really thanked her properly for her support back then.  I'd like the think that the warm memory I am sharing with you today keeps her spirit of generosity and Christian love alive though she is not longer here with us.

Head over to SignUp Genius and sign up to provide just one day of support for me while I am undergoing Hepatitis C treatment.  With 21 days down and 147 to go, there are still plenty of opportunities to participate.

Want to be a member of Team Selena? 
Support me during the 168 147 days
of my Hepatitis C treatment!  

Learn how here.

Can You Feel the Love? I Can, Thanks to You!

I know I spend a lot of time here talking about ALL my chronic illnesses, and then I ask you to leave comments, head over to my Facebook page or become one of my Hep C Treatment Supporters.  That might leave you with the impression that doing all this stuff is easy for me.

Would you be surprised if I told you this is actually hard for me?

Like a lot of you, I sometimes feel stigmatized by all my health problems.  I really don't want to be labeled "sick" and I certainly don't want to deal with all the baggage that comes along with that label.  Sometimes I think having invisible illnesses is a double-edged sword: sure I can pass for healthy, but sometimes that doesn't really get me what I need to cope and thrive.

I am not oblivious to the reactions of others. I get it that "healthy" people don't really want to know the details of how you really are.  I can see how uncomfortable they get if you talk too much about your health problems. I often find myself walking that razor thin line of 'appropriate vs. over' sharing...and wishing I really didn't have to worry about this at all!

Deep down, I would much rather be talking about a whole bunch of other things, like the stresses of daily life and making it in this crazy world.  Because you know there is so much more to me than just being a sick chick.  Sure, I try to include some of the other facets of my life into my blog, but in the past few years chronic illness just hasn't given me a break and, well, here I am.

And if I am really honest with you, I should admit that chronic illness has changed my experience of "normal" life in some pretty fundamental ways that really can't be ignored.  It often leaves me longing for "normal" things and feeling like I really don't fit in.

But I am also a risk-taker at heart.  And I'm not a girl who likes to be labeled and boxed.  So over the past several years, I have been putting more of chronically ill self out there, sharing more about all the ways chronic illness has shaped and molded me into the person you see before you today.

So when I decided to purposely ask for your support during my Hepatitis C treatment, I had to expand the borders of my comfort zone yet again.

The Bible says "Ask and it will be given to you..."  But when you are sick, you can find yourself in a position where it feels like all you do is ask for help.  Let's not forget that asking for help is HARD--for everyone, but especially for those of us who are sick.  I mean, who wants to come off as always being needy or pushy? 

So despite a lot of good reasons not to, I took a risk...and now I am really feeling the love!

You have come through for me BIG TIME and I am feeling so much support and gratitude that it is actually bringing tears to my eyes.

Here is the most recent example from today:

168 Days of Treatment...  What is that in terms of numerology? Let me share with you my findings:

168 Days.  Let's break this down: 1 + 6 + 8 = 15. 1 + 5 = 6.  Six.

Twenty-four weeks of treatment. Let's break that down, too. 2 + 4 = Six.

You may not know this but the planet Venus rules the number 6.  Venus, the goddess of harmony and love. Harmony and love that I, with all of your friends, family and supporters are sending you during this trial in your life. 

During this hardship I hope every time you see the number six -- on a clock, in passing, hell, even on the panel of the microwave -- I want you to know that it is your power number for this time and it stands for love and harmony, which you have in abundance!

What an amazing way to think about my treatment!

This is just one example of the many, many ways you are blowing me away with your support.  

What can I say?  You all are just awesome.

So for those of you sitting on the fence, afraid to ask others for the help you need, let this post inspire you to just do it.  I bet you'll be pleasantly surprised by all the love that is out there waiting for you...including some from me too.

Want to make a BIG difference
by doing something super quick and easy?  

Support me during the 168 157 days
of my Hepatitis C treatment!  

Learn how here.

Me & Hep C: Week One of Treatment Completed

It's time to celebrate!

Week one of Hepatitis C treatment has come to an end...only 23 more weeks to go.

As someone much wiser than me once said, "A journey of a thousand miles begins with a single step." Well today I have finished 7 of the 168 days of my Hep C treatment journey.

To prove to you all that I am doing OK, (or that I am just a really good actress, LOL!) I recorded this video to mark the occasion:

Video Transcript

Hi, this is Selena from the blog Oh My Aches and Pains!  And I have just completed, with your help, week one of my hepatitis C treatment. 

I could not have done this without you guys, with all of my Selena's Hep C Treatment Supporters.  You guys are the best with your messages, your (Facebook) wall posts, your "Likes", your tweets,  your comments, your e-mails.  You guys are really helping me to keep my spirits up and keep me focused on my goal here which is to beat Hepatitis C. 

If you haven't already headed over to SignUp Genius and signed up for a support mission, hey head over there now.  I've got 24, no 23 more weeks of this treatment to go, so I can use all the support I can get!  And if SignUp Genius doesn't work for you, hey that's cool; do whatever works for you.  Just keep those messages coming and I can't tell you how much they mean to me.

Now I do want to let you guys know that I have already had some side effects this week, but so far everything has been manageable. 

I've also been dealing with a little bit of stress with my healthcare providers, trying to getting them to listen to me and incorporate some of my needs into the treatment protocol.  I found out before I started treatment that we really have to watch my red blood cell count closely because if I get anemic from treatment it's going to make my dysautonomia worse.  And dysautonomia is what got me into trouble last time I tried the Hepatitis C treatment and it made me have to stop the treatment after three weeks.

You know, this has kind of involved calling some of my other healthcare providers, not the liver people, to get them involved.  And I also made a choice to call Patient Relations when I felt like hepatology folks weren't really listening to me.  You know I was a little apprehensive about doing it, but what has come out of that is an appointment Tuesday with my doctor (and) with the hepatology nurse. 

And I'm feeling a little more confident today that if we get to sit down and talk, like we are going to be able to, that we can figure this out and come up with a plan, involve more of my other treatment providers if that's appropriate, and then we can kind of just move forward.

My whole big thing is that I want us to be prepared and they want us to try to catch things early if I'm going to have side effects so that they don't become big deals.  So I'm hoping this approach will work and obviously I will let you guys know (the outcome.)

Again I want to thank you so much for all of your support and I can't tell you how much I appreciate it.  And so now I've got to get my act together and start making some of those cool giveaways for my end of Hep C treatment party I promised you guys.  So, keep sending the support, I am going to keep putting your names into the raffle for the end of treatment party.  I will also share with you as the weeks go on, some of things I'm going to make, the cool kind of give away things.  I think you guys are going to like them.

But anyway, I just wanted to let you know that I'm here and I'm doing okay.  And thank you, thank you, thank you!  And I think that's it for now.  So take care everybody and have a great weekend and I will talk you again soon.

This is Selena from the blog Oh My Aches and Pains!  One week down, 23 to go.  Woo hoo!

Want to make a BIG difference
by doing something super quick and easy?  

Support me during the 168 161 days
of my Hepatitis C treatment!  

Learn how here.

Related articles

• Can You Help Me Get Through Hep C Treatment? (ohmyachesandpains.info)
• Hepatitis C: The Facts (ohmyachesandpains.info)
• Book Review: Free from Hepatitis C by Lucinda Porter, RN (ohmyachesandpains.info)

Can You Help Me Get Through Hep C Treatment?

Ready to take the plunge!

Welcome to another edition of the Question of the Week.

Over the past 8 years, chronic illness has taken a huge toll on me. It has affected my ability to do most things, including socialize and keep in touch with friends as much as I would like.

But maybe that could change...

You see, I'm followed my Mayo Clinic doctor's advice and I am about to start treating my chronic Hepatitis C infection.  I summoning all my strength and rising to the challenge. After all, Hep C is the one chronic illness I might actually have a chance of getting rid of, if the rigorous 24 week treatment is successful.

But I won't kid you: this isn't going to be easy. And that is where you come in, because right now I need all the support I can get.

If you can, won't you please consider becoming a member of the Selena's Hep C Treatment Supporters event I created at SignUp Genius? You'll be committing to sending me some words of encouragement via email, my blog, Facebook or Twitter on one of the 168 days of my treatment.

Click here to learn more:



I am using this free online service to make my request super easy for you. SignUp Genius will send you a reminder of your support mission the day beforehand and allow you to share this event with your family and friends on Facebook and Twitter if you want to be a mega supporter (see below.)

In return, for each support mission you complete, I'll be entering your name into a drawing for some cool stuff from my new Etsy and CafePress stores (which I'm so excited to be starting up in the next few months.)  This drawing will be my way to say "thanks" to my supporters and celebrate the end of my treatment.

While I am asking ... consider being a super supporter by signing up for more than one day or a mega supporter by encouraging your family and friends to participate too. Anyone with a kind heart that wants to volunteer to support me is welcome, even if I don't know them personally.

Thank you for considering my request. I know how busy you all are managing your health, families, work and everything else in your lives. Taking your time to support me is quite a precious gift, one that I will appreciate for years to come.  Anything you can do to lift my spirits would be beyond totally awesome.

My hope is if I am able to beat Hep C I can regain some of the functioning this chronic illness has taken from me, so I can get back out there, everyday, like a normal, healthy person.

Wish me good luck for a treatment with small side effects and huge benefits!  I get started this Thursday, February 23 around 7 PM.

Related articles

• Me & Hep C: Sorting Through My Feelings as Treatment Is About to Begin (ohmyachesandpains.info)
• Hepatitis C: The Facts (ohmyachesandpains.info)
• Book Review: Free from Hepatitis C by Lucinda Porter, RN (ohmyachesandpains.info)

Question of the Week: What Is Your Grown-Up Christmas Wish?

I have been listening to Christmas songs on Pandora radio lately to get myself into the holiday mood.  One song I keep hearing over and over is "My Grown-Up Christmas Wish."  That song got me thinking about what I really need this holiday season.

With my plan for the New Year in my sights, my grown-up Christmas wish this year is for courage and determination.

You see, I am embarking on a tough journey in 2012: treating my chronic Hepatitis C infection. To do this, I am going to need all the physical, mental and spiritual fortitude I can muster. I'll need lots of support too.

Treatment will be 24 weeks of weekly interferon injections and multiple daily doses of anti-viral pills--ribaviran twice a day and a direct acting antiviral (DAA) three times a day.  There are lots of potential side effects, from flu-like symptoms, fevers and chills, to nausea, fatigue, rash, irritability and even depression.  I already know that some of these side effects will make the symptoms of some of my pre-existing chronic illness worse and that worries me.  Plus treatment might be extended beyond 24 weeks depending the results of blood work taken at week twelve.

Then, once I am done, I'll need six months to recover, time I'll also spend waiting to see if the treatment was successful.

I tried doing treatment back in 2007, and three weeks in, I experienced so many side effects that I stopped.  Looking back on that horrible experience, I realized that I failed because I didn't have the support of a medical team that was actively addressing my side effects.  Since then, I've gone to great lengths to put together a team that I thank can help me get through Hep C treatment successfully. 


Thankfully I also discovered a new book written by Lucinda Porter, RN called Free From Hepatitis C: Your Complete Guide to Healing Hepatitis C.  I read it over the weekend and plan to review it for you in-depth tomorrow.  Let me say that her book put my choice to treat my Hep C into a perspective that helps me let go of my fears and anxieties about treatment. 

As someone who is managing multiple chronic illnesses, I feel compelled to try and treat the one health condition that could possibly be cured: my chronic Hep C infection.  It's not going to be an easy fight, but I think it is my best shot to prevent some pretty scary complications down the road.  Plus I really hope that decreasing my chronic illness burden will have positive benefits in the long run.

I really need to do this.  The longer I wait, the harder it will be to get the outcome that I desire.  So really, I have nothing to lose trying treatment again...and everything to gain if I am successful.

So what about you?  What are you wishing for this holiday season?  Do you have a grown-up Christmas wish you'd like to share with me?

If you are a fellow ChronicBabe blogger, let me suggest that you write your own post about your holiday wish this week and submit it for the next edition of the ChronicBabe blog carnival by Friday, December 9. 

You can also leave me a comment here (please shoot me an email if Blogger is giving you any commenting problems) or head over to my favorite place, the Oh My Aches and Pains! Facebook page, to share your wish there. 

Here is my favorite version of My Grown-Up Christmas Wish by Amy Grant:







You can find Free From Hepatitis C: Your Complete Guide to Healing Hepatitis C at Amazon.com:

Mission 2011: I Love Twitter

Selena from the blog Oh My Aches and Pains! talks about her experiences connecting with others living with chronic illness on Twitter using the hashtags #fibromyalgia, #fibro, #chronicfatigue, #me/cfs,#chronicpain and #spoonie.

Related articles

• Mission 2011: Finding Social Support Through Social Media (ohmyachesandpains.info)
• Mission 2011: How I Make Social Media Work for Me (ohmyachesandpains.info)

Mission 2011: How I Make Social Media Work for Me

Perhaps the biggest hurdle to getting started with social media is figuring out how each platform works.

Obviously you need to sign up for an account--which sometimes can be a little complicated.  Then you need to figure out how you want to present yourself online.  Next you need to figure out how to find people to connect to and how exactly you go about having "comversations" with them.

Creating A Social Media Presence

One of the first decision you face is if you will use your real name or a pseudonym (like many in the chronic illness community do.)

I decided to use my first name on my blog, my blog's Facebook page and on Twitter.  With a pretty unique name like Selena, I don't really have to compete with others to use my real name.  If you have a more common name, you might find yourself trying to figure out how to make it different from the other Lauries, Marys or Sarahs out there.

I also decided to use a real picture of myself as my avatar.  I chose to do this so that people could see the real me in the hopes that this might help them develop a connection to me.

Connecting to Others

I found my chronic illness community by searching keywords like fibromyalgia, chronic illness, chronic pain and chronic fatigue.  I've also discovered my peers by searching the nicknames they call themselves, like: spoonies, sick chicks, fibromites, chronically awesome and ChronicBabes.

Once I identified a few people to friend or follow, I looked at their friends/followers lists for ideas about who else I might want to interact with.

Luckily for you, if you want to try Twitter, I can make connecting to others there a little bit easier.  I have put all my friends with chronic illness on Twitter into a public list called My Chronic Friends.  I think they are a great group of people and encourage you to follow and interact with them too.

Communicating with Others

To be honest, I just sort of dove in, joining groups and then inserting myself into conversations. Using this tactic, I sometimes got positive results and sometimes got mixed results.

In retrospect, I could have spent more time "listening" to conversations to see how they unfolded to get the hang of things.

What threw me off initially was not always getting a response when I put myself out there.  I learned over time that not all my attempts at communicating will elicit a response from others.  As my social connections grew, I knew others were reading my tweets and posts even if they didn't always respond to them.  Somehow knowing this has become a social connection in and of itself.

Here are some of the ways that I connect with others:

• Contributing to a conversation on a Facebook wall or in a Facebook group
• Having a conversation via Facebook messages 
• Sharing a link, photo or video with others on Facebook
• Hitting the "Like" button on a Facebook page or status message
• Reading and commenting on a blog posts 
• Writing a blog post in support of an awareness day or illness-related event
• Hosting and participating in blog carnivals
• Using Twitter to have any time, anywhere conversation with others
• Participating in Twitter chats, like the weekly #spoonieparty

Building Relationships

Through social media I have learned a lot about other people just by reading their tweets, comments, posts, etc.  In many respects, my interactions online are very much like having a whole bunch of digital pen pals.

I learn bits and pieces about them with every shared communication.  And just like a puzzle, those bits and pieces come together and a fuller picture of each person emerges over time.   

Always Available

The absolute best thing about social media is that people from around the world are always there participating in conversations--all day and all night.  So when it is 5 am and I can't sleep because of pain or insomia (or painsomia), I can always find someone on Twitter who is awake and wanting to chat.

I also love how well social media works with my chronic lifestyle. Social media is always there for me whenever I want it or need it to be.  So when I have the energy and the time, I can connect to other people simply by tweeting, commenting, chatting and posting. 

Final Thoughts

I hope this post has inspired you to try some new ways of connecting with others through social media.  I've also included these links below to some good articles with ideas about how to get started and how others with chronic illness use social media too.

• 10 Golden Rules of Social Media
• 10 Steps to Start on Twitter
• How to get a conversation going on Twitter?
• Social Media Conversation Basics
• 8 Reasons Why Twitter Can Boost Your Happiness
• Does Facebook Boost Happiness — Or Not?
• Getting Low: Helping Others with Chronic Illness
• Social Networks a Lifeline for the Chronically Ill
• Social media brings hope to chronically ill

Mission 2011: Finding Social Support Through Social Media

photo by crirez

My Life Resembles a Commercial 

Have you seen that commercial on TV with the young woman who is trying to get her parents connected on Facebook?  She comments that they only have 19 friends there; meanwhile her parents out mountain biking with their friends.  She, on the other hand, has 687 friends on Facebook and is sitting at home in front of her computer.

I got a chuckle watching that commercial.

Then I went to lunch with a very good friend of mine.  She has been diagnosed with a pretty awful illness, Lymphangioleiomyomatosis (LAM), that one day will limit her ability to do things.  So when I told her how I use social media to connect to other people, she told me she is trying to be like those parents.  She wants to get out there and experience as much of life as she can before her life resembles, well, mine.

We both got a chuckle out of her comment.

My Social Reality

I can't be mad at her for pointing out the obvious.  She is blessed because right now her illness isn't making her mostly housebound and unable to work.  She doesn't spend much time on social media sites because she is busy with real life.

If I was in her position, I wouldn't be spending much time with social media either.

The truth of my current situation is that I spend a lot of my time alone.  I have a very limited ability to participate in social activities because of chronic and persistent pain and fatigue. When I can participate, it takes extensive planning on my part, as well as a lot of assistance from my family and friends to make it happen.

Even then, there is always the chance that I might have to cancel at the last minute because my body won't cooperate.

To be honest, I don't see a lot of my real life, in-person friends very often because my very specific requirements for getting together don't mesh with their lifestyles.  That's just the way it is. 

From Real Life Disappointment...

I guess I knew this was going to happen, which is why when I first was diagnosed with fibromyalgia and chronic pain I made a huge effort to find a weekly in-person support group.  I had such a positive experience with the weekly young adult cancer support group I participated in from 1988 to 1992.  I wanted that same kind of experience again as I began to face a life with chronic illness.

So I searched high and low...and came up empty handed.  

The closest I got was a monthly support group, which I tried for a while. With chronic illness making life pretty unpredictable for myself and others, the group was not well attended.  People came and went, often before I was able to get their contact information so we could stay in touch.  Then when I lost my transportation assistance, which was key to my regular attendance, I stopped going too.

...To Online Friendships

Eventually, I turned to the Internet.  It was actually one of my real life friends who pushed me in the direction of blogging, Twitter and Facebook.  (She is now one of those real life friends I hardly see anymore--yes, that is ironic, isn't it?)

From that initial exposure, I went on to discover websites and blogs that included community building tools like forums and chats that took meeting people and getting support to a whole new level.  Through my blogging, I discovered blog carnivals where I met other bloggers and worked collaboratively with them around issues and themes of mutual interest.

Flash forward to today and I thank the Universe every day that websites like Facebook, Blogger and Twitter exist.

Without them, I would be really lonely...

I have more to say on the topic of social support and social media, so please come back and join me next Thursday when I plan to continue this discussion.

Related articles

• Mission 2011: Friendship Fresh Start (ohmyachesandpains.info)

Offering Support 101

Image via Wikipedia
As much as I would like to think that my support system intuitively knows how to help me, sometimes they don't come through for me. I've come to the conclusion that they do want to help me, but every once in a while they forget how to do it. It reminds me that being able to offer support is a skill that must be learned and practiced.

Recent events have made it clear to me that it's time for a little refresher course for my support system on how to offer support.

Just Listen

Lesson number one is just listen. And when I say listen, I mean focus your entire attention on the words being spoken to you and let go of trying to come up with a response to what you hear. We so often get distracted by how we want to respond to what someone is saying that we stop listening to the other person. In that moment, we get disconnected from what is needed most from us--a sympathetic ear.

Active listening is a hard skill to master. But I think you will agree with me when I say that our greatest supporters are the ones who are able to simply listen to us when we need talk. They are the ones who fully absorb our monologue and can reflect our words back to us. In this way, they act as a sounding board, helping us view our thoughts and feelings in a different light.

Stop Talking

Lesson number two is stop talking. As I mentioned above, when we listen to someone speaking we often get distracted trying to come up with a response to their words. This often leads to us to interrupting the speaker and introjecting our thoughts and opinions in to their monologue.

We sometimes forget that it is often easier for us to understand other people's problems and harder for us to see our own. We forget that to help someone else get a clearer view of their problems we must let them talk. It does no good for us to jump in with our insights and solutions. We need to remember that the best solution for someone else's problem is the solution that they come up with for themselves.

Again, I think you will agree with me that the people who support us best are the ones who guide us to our own solutions.

Say Something Nice

When the speaker is done talking, it's time for the third and final lesson: say something nice. What I mean by "nice" is say something that is empathetic and supportive. Things like: I am sorry you are going through this. This sounds like a really tough situation. I can see that you are really upset by this. I know you will figure out what to do about this. I am here for you whenever you need to talk.

I see this as the part where you, the listener, let go of your thoughts and feelings about the speaker's situation and focus on the support they need in the moment. Because the bottom line is your thoughts and feelings about the situation don't matter. If you want to support your friend, you need to focus on your friend. Your friend needs to figure this out for themselves, and unless you are directly asked, your opinion about the situation isn't relevant.

We don't always have to agree or see eye to eye with our friends, but we do need to show we care. Which I guess means if you find yourself over and over again in situations where you can't put your opinions aside in order to be supportive, then perhaps the friendship isn't meant to be.

Fostering the Support You Need

Reviewing these three lessons, you now know what to ask for when you approach someone for support. If they start talking and offering solutions, you can let them know that you just need them to listen. If they are not sure how they can help you, you can let them know that by listening to your concerns it helps you explore your situation and come up with an answer that will work for you. If their words sound critical or judgmental, you can let them know that saying something nice helps you feel understood and supported.

In addition, practicing these three lessons when a friend comes to you for support demonstrates to them an effective way to help someone in need.

So you see, with a little patience and coaching you can create a support system that is responsive to your needs.

100 Words: On Bad News

Image via Wikipedia

Two of my friends
received bad news:
a death
and a troubling diagnosis.

And everything I want
to say to comfort them
sounds so overused.

In my search
for the message I want to convey,
I remember my own bad news
and how I felt to receive it.
I run my fingers over scars,
saying kind words to soothe them
and sigh with relief
that I survived those bad times.

I realize then what I really want to say:

I AM HERE FOR YOU
if you need me.

Question of the Week: How Do You Connect to Others?

Image by gin_able via Flickr
I got together with a few of my friends yesterday.

We talked about our pets, new shoes and recent travels. The conversation got lively when the subject turned to the medications we take for our chronic conditions. That lead to a straw poll on TV commercials for fibromyalgia medications. The consensus: they advertise magical cures that don't happen in real life and all of us who have tried these medications want our money back.

After that, the conversation turned to reading books and how chronic illness makes even this simple task more difficult. Seems fibro-fog symptoms like short term memory problems mean a lot of reading the same page over and over again. I shared that since I now need reading glasses, it's made it more difficult for me to read. Someone suggested books on tape, which sounds like a good solution.

Eventually, the chat dwindled and we all went back to different pursuits, like watching TV, fixing dinner and getting ready for bed.

So how did I connect with my friends with chronic illness last night? By signing onto Twitter of course.

You see, when I first became chronically ill and disabled, I wanted to join an in-person support group. I wanted to meet face-to-face with other people going through what I was dealing with to give and receive support. It was a good idea, but after an exhaustive search, I couldn't find any groups. It seems getting together in person is a tall order for people living with chronic illness...

Then my friend Cyndie introduced me to the world of social media as part of our blogging challenge back in May 2009. Initially, I used social media to get the word out about my blog and share my posts. But then I started to discover how to connect with other people in meaningful ways by leave comments and sending tweets.

So my question this week is How do you connect with other people? Have you been fortunate to find in-person support? Do you use social media and, if so, where do you go online to connect? To participate, leave a comment here or head over to the Oh My Aches and Pains! Facebook page to join the discussion.

And thanks for taking the time to connect with me through my blog.

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Save It For Later

Image by Adam Foster

I love 80's music, probably because I am old and that is the decade in which I reached adulthood. Which, of course makes me somewhere closer to middle age than I care to admit. Although I swear mentally I feel like I am still in my twenties, now just smarter, wiser and making fewer mistakes. As for my poor body, well it feels much closer to retirement age than my actual age.

I guess not having any kids makes this illusion possible. I don't have anyone reminding me that the 80's are no longer cool and neither am I...

So since I have been trying to follow the blogging theme of SAVE this month, I keep playing the English Beat song Save It For Later in my head. Weird thing is, I went to look up the lyrics for the song online and discovered this:

Two dozen other stupid reasons
Why we should suffer for this
Don't bother trying to explain them
Just hold my hand while I come to a decision on it.

Sooner or later
your legs give way, you hit the ground
Save it for later
don't run away and let me down.
Sooner or later
you'll hit the deck you'll get found out
Save it for later
don't runaway and let me down, you let me down.
You run away run away runaway runaway runaway runaway
And let me down.

Hmm, O.K., didn't realize until now how much this speaks to my life with chronic illness. This is how I would paraphrase it:

Don't bother trying to explain to me why I am suffering like this. Can't you see! My body has let me down and I have hit the ground. I've hit the deck and found out just how fragile I am. All I want is for you to just hold my hand; please don't runaway and let me down.

I found an interview with English Beat singer/guitarist Dave Wakeling who had this to say about the meaning of the song:

"... it was about turning from a teenager to someone in their 20s, and realizing that the effortless promise for your teenage years was not necessarily going to show (up). ...it was about being lost, about not really knowing your role in the world, trying to find your place in the world. ...you'd have all sorts of people telling you this, that, and the other, and advising you, and it didn't actually seem like they knew any better. So it was like keep your advice to yourself. Save it - for later."

So yeah, the infinite promise of my teenage years came crashing to a stop when I was diagnosed with cancer at age 22. I've found myself feeling lost more than once since then and I've had to reinvent myself several times. While it might be easier for someone else to actually see my issues, it's up to me to figure out my next move. So if you are deciding whether to give me advice or support, the safe bet is give me support.

You can't go wrong just holding my hand and being there for me.

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When You Have Cancer: Tips for Coping (part 1)

Image by helgasms! via Flickr

A friend of a friend just received bad news: her breast cancer came back. More tests are needed before surgery and other treatments can begin. So for now, a network of friend responds to requests for positive thoughts and healing energy while the waiting begins...

This got me thinking about the practical side of being a cancer patient. I know it's been 21 years since my cancer, but an experience like that really stays with you. I always go out of my way to offer encouragement, hope and practical suggestions to newly diagnosed cancer patients and it struck me yesterday that I needed to write these suggestions down. So here are some of my suggestions for coping with cancer:

• Being diagnosed with cancer, or finding out the cancer has returned, is a huge, life-changing event. Between the medical tests, procedures, surgery and treatment, it can feel like getting sucked up into a tornado. Occasionally, you need to step back from the tornado and find some quiet, peaceful time for yourself.
• Having cancer brings up a lot of feelings and it is important to really try and feel every one of them in the moment. This may be hard to do when the people around you want you to have a "positive attitude" and "be a fighter." It may be scary to feel helpless, fearful, angry and sad, but these feelings don't last for long when you have the courage to face them.
• Don't get hung up on the statistics. It's been quite a while since I took a statistics course, but this I remember: statistics describe what happened in the past. With most statistics, there is a time lag between when the data was collected and when the statistics are reported, anywhere from a few months to a few years. So what was true in the past is not necessarily what is true right now, in the present. Use the statistics you are presented with as an estimate of the size of the fight ahead of you. Then focus your mind on the outcome you want.
• If you are newly diagnosed, think twice before you head to the Internet and start to Google information about your type of cancer: you can easily get overwhelmed! Initially, stick to websites like the American Cancer Society which are specifically designed for the lay person or ask a friend or family member who is good at Internet research to wade through the plethora of information for you. Ask for and pick up pamphlets and brochures in your doctor's office to get you started learning about your cancer and its treatment.
  
• Decide how much information you want from your medical team and let them know. Some patients want just the facts, others want details and copies of all their test results. If the amount of information you want differs from the amount of information your family wants, consider giving your permission to your medical team to speak to family members without you present.
  
• Don't forget you have the right to a second opinion. If you are going to invest the time and energy into a second opinion, consider getting it from an institution that conducts a large number of clinical trials, like a university cancer center or The City of Hope.
  
• During cancer treatment, you want to be proactive and promptly report any new symptoms that develop to your doctor. You also want to let your doctor know of any treatment side-effects. Oncology is one field of medicine that excels at helping patient manage their treatment side-effects, so do not suffer unnecessarily.
• Take advantage of any support options available to you. This can range from chatting to other cancer patients in the waiting room, talking to family and friends who are cancer survivors, using Internet chat rooms, forums and list servs to telephone and in-person support groups. Being with fellow cancer patients and survivors provides the opportunity to share ideas, coping strategies, thoughts and feelings with other people who really know what you are going through. Your fellow cancer patients and survivors give you a special kind of support you can get no where else.
  
• Ask for help. Cancer treatment is difficult and there are times when you will need other people to help you get through it. Anticipate that you (and your spouse) may need help with grocery shopping, driving to appointments, picking up the kids from school, cleaning the house, etc. Put the word out early that you might need some help and see who is available ahead of time.
  
• Make a call to your local branch of the American Cancer Society and ask about the local programs and services they provide. There may be volunteers able to help with transportation to and from your chemotherapy and radiation treatments, support groups, the Look Good ... Feel Better and other resources available to you.
  

I'm just getting started here, so tomorrow I'll return with more suggestions. I can see that this is going to be a series of articles and I promise I'll devote a post to some resources as well. In the meantime, if you have any comments, questions or suggestions you want to share, please leave a comment below.

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My Personal Heroes: My Young Adult Cancer Support Group

We were the "Thursday Night Support Group" at Vital Options: Support for Young Adults with Cancer in North Hollywood, CA. We committed to coming for 12 weeks per session, every Thursday night from 7 to 9 PM and our group leader was Karen Redding, LCSW. I joined the group after I completed my cancer treatments in the Fall of 1988.

We sat together in a room and talked about how our lives changed when we were diagnosed with cancer. We shared about the tortures of cancer treatment, the uncertainty of remission, the heartbreak of recurrence and the fear of our own mortality. We ranted about how stupid cancer had interfered with our lives and plans and relationships. We talked, listened, cried, shared, laughed and supported each other during our time in group together.

It is amazing to me how we came together as a ragtag family and how the dual experiences of cancer and the support group forged a strong bond between us. On the surface, we came from different backgrounds and upbringings and I often think that we would never have even met each other under normal circumstances. As much as it took away from us, it was the cancer that brought us together, opened us up, brought out our caring and connecting selves and helped us see the similarities among us.

The members of the group called Karen, our leader, facilitator and guide, a "soft steamroller." She didn't let us just blurt things out without taking the time to explore them. This was not always an easy or enjoyable process, but Karen knew it was necessary for us to feel our feelings, talk about our darkest fears and work through our issues until we could see a resolution. We each had our turn facing the "soft steamroller," yet seeing my fellow group members make it through the group process to find their own personal truth and answers gave me the courage to let go and go with the flow when it was my turn.

Through participation in the group, we all figured out how to live our lives, again, now that we were cancer patients and cancer survivors. For me personally, the group helped me find the courage to get back up, dust myself off and start my life again. Among other things, I was nervous about going back to UCLA to complete my Bachelor's degree; all my friends had graduated without me and I faced senior classes with co-eds who all knew each other but didn't know me. With the group supporting me, I didn't feel so out-of-touch and out-of-place when I returned to campus because they were there for me, during group and outside of group, if I needed someone to talk to, was struggling with fitting in, felt lonely or overwhelmed.

It's been almost 20 years since the group disbanded and yet I can still remember my ragtag family: Wayne, Benita, Katie, Jade, Gail, Julie, Cameron and me. Some of us are no longer here: Jade died of metastatic breast cancer, Gail died from lung cancer and Julie died from metastatic colon cancer. The last time I saw Katie and Cameron was at my 1998 wedding in Marina del Rey; Benita and Wayne were invited too but could not make it.

As the years have passed, we all have moved on and away from each other.
Though we no longer are together, the memory of the bond that was established, nurtured and grew between us in group still exists deep inside me to this day. I will always be a member of the "Thursday Night Support Group" and they will always be my family, where ever they are. Their love and support while I put my life back together after beating cancer is what makes my fellow "Thursday Night Support Group" members heroes to me.