Last month I started a FibroHaven page on facebook. I have been promoting it quietly with a link on my sidebar, and with little fanfare we are already up to over 200 participants. It is meant to be a compliment to my blog and a quick way for me to share current articles and information. You do not need sign up on facebook to participate. Just click on this link to FibroHaven on facebook and join in on the conversation. If you are signed up on facebook, click on the “become a fan” button and the daily posts will feed automatically to your home page. I hope you enjoy this new format of FibroHaven. I know I am!

Today’s FibroHaven facebook post is shared from Lisa at invisibleillnessweek.com. In preparation of Invisible Illness Week, Sept 14-18, she has created a fun exercise to share 30 things about ourselves. If you have a blog of your own you may want to participate by sharing your answers there, but if you do not have a blog, you can share you answers in a discussion at FibroHaven on facebook. Lisa has created a great way to express ourselves to each other. Maybe this will be the tool you need to explain your experience and struggles with chronic illness to your loves ones. It is worth the try!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia

2. I was diagnosed with it in the year: 1997

3. But I had symptoms since: 1996

4. The biggest adjustment I’ve had to make is: Losing my ability to be a full-time, productive worker. So much of my self-worth was invested in my career and it has been hard to redefine myself and understand my new purpose.

5. Most people assume: That my symptoms are mild. Because I am so  active in growing FibroHaven’s support community, I often hear remarks like “I wish I had your energy.” or “I wish I could do as much as you are able to.” I am excellent at hiding my misery. My husband sees it, and tells me I should not sugar coat how I am feeling. I talk lightly of my symptoms because it helps me and my mindset not to dwell. It is really for selfish reasons that I do not share the depths of my symptoms.

6. The hardest part about mornings are: Pain, stiffness, fatigue, dizziness – and my poor expectant puppies who are always so joyful in the morning, and confused by my sluggishness.

7. My favorite medical TV show is: I guess it would have to be ER since I watched it from its inception to its end.

8. A gadget I couldn’t live without is: My toes! Maybe not quite a gadget, but I can pick up almost anything with my toes. They constantly save me from the pain of bending over.

9. The hardest part about nights are: Looking back on the things I had planned to accomplish that day, but did not get done.

10. Each day I take 1 or none pills & 3 vitamins.

11. Regarding alternative treatments I: Am a huge proponent in yoga and meditation, but would love to be able to try more like acupuncture, massage, & biofeedback. It is so cost prohibited (see number 4). I am always looking for new cheap/free alternative treatments and find many by joining groups on Meetup. Some charge small fees, but many do not.  I have even found free yoga classes at local libraries and free meditation at a local center.

12. If I had to choose between an invisible illness or visible I would choose: Had to chose – I would chose the invisible illness I currently have as I have 13 years of experience in dealing with it. I would never choose to start over with a new illness.

13. Regarding working and career: I miss being the sassy, successful sales rep I once was. I miss connecting with people on that level. But I love the direction of my new career as a freelance writer. I can work from home, and around my symptoms, but it is not yet as financially rewarding as my previous career. I miss the freedom money brings. I miss dressing up to meet a new client. I miss feeling really good at something.

14. People would be surprised to know: That I am not as in control as I appear. I am full of pride and bravado. It makes me feel less vulnerable.

15. The hardest thing to accept about my new reality has been: Letting go of my old reality, and all the control I had. Type A, control freak faced with a debilitating illness… It may take me 13 more years to accept my new reality. Except I am convinced in 13 more years “debilitating illness” will not be a part of my vocabulary!

16. Something I never thought I could do with my illness that I did was: Support and encourage others. In the depths of my despair, when I was looking for guidance, I never thought I could become a voice for others. But I have, and it has helped me more than I would ever have thought possible. Thank you for letting me be a voice for all of us.

17. The commercials about my illness: Make me cringe! Take a pill, and then life will be all sunshine and rainbows. BARF!

18. Something I really miss doing since I was diagnosed is: Dancing… Moving my body in a carefree and painless way. I would sometimes go out with my friends and dance for 6 hours straight. I would just feel the music and let it move my body. I can’t believe that this body was once able to move like that. But it was, and I miss it.

19. It was really hard to have to give up: Should I talk about my sales career again, or would that be redundant? It was very, very, very hard for me to give that up. Almost like starting your own business, turning it into a great success, and then just handing it off to someone else to reap the benefits. Even worse, that someone lost all my best accounts and ruined my territory. Such a shame!

20. A new hobby I have taken up since my diagnosis is: I was going to say my blog, but that is my passion, not my hobby. Then the answer must be poker! My husband and I began playing in a regular Friday night came several years ago. I seldom missed a week, even if I was not feeling well, because poker is sometimes the only thing that can distract me from my pain. There is a level of focus and concentration that is needed to play well that takes me right out of my pain and fatigue. And I do play well. Poker is fun!

21. If I could have one day of feeling normal again I would: Take my hubby and my dogs and backpack around  Catalina Island. Something we did back in my health days (minus the dogs – no dogs allowed – but this is a fantasy, right). It is like having your own private island with isolated beaches to explore. I miss the feeling of strapping all that I need onto my back and heading out for the day. Freedom! A day of freedom from this body would be priceless!

22. My illness has taught me: That I am not invincible. That I am not in control. That my pain is there for a reason. Still working on figuring out the reason.

23. Want to know a secret? One thing people say that gets under my skin is: “It could be worse.” They are right, but pointing out that it could be worse, does nothing to actually make it better.

24. But I love it when people: Treat me like they always have – like I am still an intelligent, funny, viable person – like I still matter.

25. My favorite motto, scripture, quote that gets me through tough times is: “It could be worse.” Okay, no –  just kidding! That is what I meant by still being funny. We have to have a sense of humor, right?

I don’t think I have a saying that gets me through tough times, but I do love and believe in the saying “The harder I work that luckier I get.” There is going to come a day when my symptoms will be in control, and I know I will be considered lucky, but I can assure you luck doesn’t just happen. It is going to take a lot of hard work for me to get that lucky.

26. When someone is diagnosed I’d like to tell them: There is hope. You are not alone. You are not crazy. What you are experiencing is real.

27. Something that has surprised me about living with an illness is: That my marriage has thrived along the way. Somehow we have managed to grow together instead of apart. You probably think I am one of the lucky ones – and I am! – but again, luck is not random. I am lucky and our marriage is strong because we have worked hard at it, and we are still a work in progress. I am still learning to communicate and to trust and to let go.

28. The nicest thing someone did for me when I wasn’t feeling well was: Accepted me and my limitations, and did not judge or try to fix things. They were just there for me while letting me be.

29. I’m involved with Invisible Illness Week because: Because it is important. Because Fibromyalgia is invisible, and like so many other chronic illnesses it is misunderstood. And because it is up to us to help people understand. We cannot just sit back and will them to understand. We have to open the doors of communication and use productive means to enlighten everyone to our invisible illnesses. Not everyone will get it, but with each that does we are that much improved.

30. The fact that you read this list makes me feel: Like you care. This is so much longer than I anticipated it would be. I had a lot to say, and everything I said was pure and honest. It felt really great to do this exercise, and I appreciate you for taking the time to read it.

In my previous posts I listed the main social networking sites (part 1) and group forums (part 2) available if you are looking to join an online community for support, encouragement, camaraderie, or just to have a place to vent. My inspiration for putting these posts together is to help alleviate the potential for isolation if you are living with Fibromyalgia or most any chronic illness. For this post I am going to focus on general resources available, like blogs and websites. Again, this is just a partial list of what is out there, so feel free to leave recommendations in the comments if you know of a forum or support group I did not cover.

Blogs

If you are reading this post then you are clearly already a reader of blogs and quite possibly have several you read and may even maintain one of your own. Blogs are a great way to share information and ideas. Fibromyalgia Haven has become my favorite place to go everyday. I have the chance to express myself here like I can nowhere else. My mental and emotional outlook is vastly improved since I began writing here, and I am constantly researching for new things to write about and share so my knowledge and understanding of Fibromyalgia has increased tremendously. I am proud to call myself a blogger!

I could not begin to list the multitude of Fibromyalgia blogs out there. I think I find a new one each day. But I will list several great sites which contain blog directories and make it easier for you to search a specific blog category. Here are links to the ones I am most familiar with followed by a description taken from their own site:

Alltop – Alltop is an “online magazine rack” of popular topics. We update the stories every hour. Pick a topic by searching, news category, or name, and we’ll deliver it to you 24 x 7. All the topics, all the time.  (P.S. – Have you noticed my Alltop “best of the best” badge I proudly display on my sidebar? Cool, huh!)

Blog Catalog – BlogCatalog is more than just a social community for bloggers; we are one of the largest blog directories on the internet. Whether you are looking to search blogs, connect with bloggers, learn more about blogging, or promote your own blog, BlogCatalog is for you.

BlogHer – The community for women who blog.

Bloglines – We track your favorite news, blogs, weather, and classifieds so that you don’t have to.

Delicious – The tastiest bookmarks on the web.

Digg – Digg is a place for people to discover and share content from anywhere on the web.

Google Blog Search – (Google needs no description.)

Networked Blogs – Blogs are social networks. Are you networked yet?

WordPress Blogs – Just Another WordPress Weblog

Yahoo 360 – A place that’s all about you to share with friends and family.

General Resources for Education and Information

Many of these sites have monthly newsletters you can sign up to have their top news e-mailed directly to you. It is a great way to stay on top of current events and news in the ever-changing Fibromyalgia community. 

National Fibromyalgia Association -The National Fibromyalgia Association is a 501(c) 3 nonprofit organization whose mission is: To develop and execute programs dedicated to improving the quality of life for people with fibromyalgia.

Fibromyalgia Network – We’ll keep you current on fibromyalgia treatments, coping tips, and research to enrich your life.

Fibro Center – A community of education, support, and understanding for people with Fibromyalgia. (I hesitated to list this site as it is sponsored by Pfizer, but if even one person finds it useful then it is worth putting my personal bias against Lyrica aside.)

Fibro and Fatigue Centers – Whether you have been diagnosed or misdiagnosed, whether you have been searching for years to get your life back to “normal” or you are just starting to feel it slip away – there is help and hope!

Fibro 360 – A community of Hope and Understanding for People suffering from Fibromyalgia

FibroTalk – Online Community Support

We Are Fibro – The Social Support Network for those Living with Fibromyalgia

Please feel free to add your blog or favorite site in the comments.

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Social Networking Sites

Twitter – The day I wrote Conversation on Isolation I hopped onto twitter and posted the following comment: “Twitter is a great way to combat the isolation of Fibromyalgia and chronic illness. Bravo to everyone who makes the choice to reach out.” Of the 258 comments I have written on twitter, this one received the most responses and re-tweets (reposting of my comment by fellow tweeters to help spread the message). Twitter is a great way to connect with other people living with Fibromyalgia and chronic illness. Last week I left a brief tweet that I was not feeling well enough to participate on twitter, and I received many well wishes and encouraging responses. It moved me deeply. I highly recommend giving twitter a try. Here are a few tips.

1. When you create your profile keep in mind the kind of people you want to connect with. If you have Fibromyalgia, are a passionate reader, love to knit, and are living a gluten free lifestyle, include all of that in your profile and it will help others with similar interests find you.

2. Upload a photo into your profile. It doesn’t have to be a photo of you. It can be a photo of an eggplant if you want. Go crazy. Be original. People are more likely to follow you if you have an image in your profile, and once you get active and start tweeting they will immediately identify you by your photo.

3. Make your tweets meaningful to your intentions. If you sign up and start tweeting about the tacos you made for dinner, that may not interest any of your followers, but if you include info on a great gluten free taco seasoning you used, then you are sharing meaningful and interesting information that will likely start a conversation.

4. Search other tweeters to follow with similar interests by using twitter search and keywords – ex: Fibromyalgia, #Fibromyalgia. The hashtag (#) placed before a word helps to organize the published updates which in turn helps with your search.

5. Join a Twibe. For every area of interest, there is a twitter group to join, and if not – start your own! I belong to twibes for Fibromyalgia, gluten free, bloggers, and writers. It is another great way to find people to follow and start making connections.

6. There are many, many twitter applications out there to help you. I have no specific recommendations, but if you decide to join twitter just do a quick google search to help find them. How is that for vaguely helpful!

7. Follow Fibrohaven on Twitter! Come on now. You know I am a lot of fun and I sometimes even have something useful to say!

Facebook – Most of us know facebook is a great way to reconnect with old friends, and to stay in touch with family members, but there are also many groups and causes on facebook to join.

I belong to Fibromyalgia Awareness. It is a global group with 12,877 members and over a thousand discussion topics. You can always find a conversation going on and I have met several women who I now call friends from this group. If Fibromyalgia Awareness is not a good fit for you, there are several other groups you can join like I Will Not Let Fibromyalgia Run My Life, or Fibromyalgia Sucks. 

There are also several blogs you can follow on facebook including Fibromyalgia Haven.  Each blog has its own page and message board so you can dialog with the blog’s author and other followers. It is a great way to create small intimate communities.

And if you just want to get away from Fibromyalgia for awhile and connect with people that love In-N-Out burger as much as you, there is a group for that too! In addition to Fibromyalgia Aware, I belong to a writers group and a group for fans of my favorite author (T.C. Boyle) just to name a few. Facebook is worth joining just to explore all of the possibilities. 

Meetup – Meetup is a great resource to find events and groups in your own community. Their motto is Do something • Learn something • Share something • Change something. Everyday someone is creating a new group on topics from Fibromyalgia and CFS, to book clubs and clubs for beagle owners, groups for personal growth and the law of attraction. You name it, there is probably a group for it.

Meetup is the site I use to organize my support group. For a small annual fee we have a wonderfully organized website with a message board and calendar to list our events. So even members who are never physically at a meeting can contribute and participate. I am also regularly being contacted by other meetup organizers and members looking to participate in a meeting or sponsor an event. Meetup is an excellent resource. Currently there are 78 Fibromyalgia meetup groups worldwide – 57 Chronic Fatigue, 75 Chronic Pain & 52 Chronic Illness. Maybe there is a group close to you!

Myspace – I am not active on myspace, but I did a simple search that came back with nearly 10,000 pages related to Fibromyalgia.

So you see, there are a lot of options just within these four examples. The best way to research them is to go ahead and create a personal profile so you have access. There is no risk or cost to you, and if it turns out not to be the environment for you, you can easily delete your profile. If social networking is not for you, maybe an online forum will be. Check back tomorrow for my post on the multitude of forums out there.

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My first exposure was to a yahoo support group for Fibromyalgia. It did not take me long to realize that it was not the place for me. Each person on there had a signature which listed all of their illnesses and health complaints. The longer the list the more clout you had. People were listing every trivial thing wrong with them in an attempt to make their signatures longer. I was really turned off to it, and it did not help that I could not find an informative message thread that I was interested enough to contribute to. But to prove that “value” is not the right word I am going to address that this group clearly did have value as it had a lot of members – over a thousand if I remember correctly – and they all seemed very happy with their labels. From my perspective it was a group that embraced victimization and was not so much looking for answers to questions and improvement to their health as they were looking for a community of fellow complainers. Again, this is my perspective.

Since starting this blog I have researched many other online groups, and there are some great ones out there – great to me that is, which is purely subjective. Maybe that is the word. Maybe “subjectiveness” works where “value” does not because it is all subjective. It is a matter of taste, preference and compatibility. I belong to one in particular where I am constantly impressed with the thoughtful and informative topics that are discussed. I am impressed because that is what I am looking for in a group and that is the type of group in which I feel comfortable sharing. But sharing in an online forum can still be isolating and impersonal, which leads me to some of the things I have been struggling with.

Even on my favorite message boards, I see people who go unnoticed and unheard. I see people reaching out and getting no response. Last night for instance I found the following two posts by the same person to which there were no replies.

Post One

does anyone live in california in the san bernardino area? looking for support and and new friends.

Post Two

i feel so alone right now. just wonderd if there was anyone close to me or does everyone live so far away..

These posts broke my heart when I read them. I did respond to her with information on a local support group in her area, but it really got me to thinking afterwards. How many posts like this go unnoticed? How is she left feeling about her exposure and the group after this experience? How much responsibility do we have as members to reach out and help her? How much responsibility does she have to find the right online group for her needs? Is she even interested in the information I gave her?

These are my thoughts on a Monday morning and they have left me melancholy. I do not have the answers, but I do feel a responsibility and a need to authenticate my contribution to these boards. It may take me sometime to contemplate all of this, but then again, whatever I come up with, it will all be purely subjective. Welcome to my brain!

I organized the support group through an online social networking site. They are masters at making it easy and organized to start your own group. Before this weekend, the only requirement to join my group was to live locally and be suffering from Fibromyalgia and/or chronic pain/illness. Of the 23 members, 22 joined because they were genuinely looking for information, coping skills, community and compassion, but one less than active member was looking for customers.

Her first attempt at interacting with the group was by jumping into an e-mail thread about carb cravings and low energy. This is what she had to say:

 I would love to share my story about how I now have my inflammation in complete control naturally and I no longer have painful flareups that I have had for years. I have been reading everyone’s comments and I hear so many people who need help.  The nutritional product that has changed my life and my health is something called Monavie.  I will gladly share my story and explain more about why this one nutritional thing has changed my health.

Clearly a sales pitch, right? For those of you who have not heard of Monavie, it is one of the newest mulit-level marketing schemes opportunities which promises great health and great wealth. Now the former sales rep in me could almost appreciate the efforts of this “member.” After reviewing her profile I could see that she belonged to several health and wellness groups and with each group she offers to “share her story.” Let me tell you, sales is not easy, and I would imagine sales of this product is even more challenging. So she is ambitious and she has found a clever way to find potential customers without having to put forth much effort. Well, she tried her sales pitch out on the wrong group.

The well-informed and thoughtful women in my group were all over it.  Here is the first reply.

I am very leery of these products that profess to cure every illness known to mankind.  People with FMS do not have inflamation, even though it feels like it. I have tried too many ‘miracle’ cures over the years and won’t subject myself to that roller coaster ride anymore.  It’s harder on the psyche than dealing with the pain.  That’s my experience.

Thoughtful, well-spoken with a side of “I’m nobody’s fool!” How clever of her to point out the Fibromyalgia does not cause inflamation. But the replies became a little more heated after that.

Please don’t use our site to promote and make money off of people who suffer from cronic pain which is neurologically based.  There’s no magic cure. And there’s no food in the world that can take away my pain. Don’t try to sell me anything. That’s not what this group is about.

Polite yes, but to the point. And again well-informed enough to point out that Fibromyalgia is believed to be neurologically based. Eventually I stepped in, even though I think the members made their point very clear.

I appreciate that you are selling a product you believe in, but as (group members) have expressed already, this is not the appropriate place to do so.  It is important to me as the group moderator that each member feels safe and comfortable sharing with each other via our groups protected e-mails.  Please feel free to join in on any conversations as long as you are simply sharing information, not selling a product.

I guess coming from the moderator made it somewhat more official, because until this point she had written several more times in defense of her miracle elixir, but after my response this is what she had to say.

I apologize for even trying to help anyone.  Obviously, this is a heated subject for many people and I apologize to everyone for even saying anything.  When you mentioned that you were interested in what people were doing that helps I thought that I would share what I know as a nutritionist and a person who has personally suffered for years.  Obviously, this is a beehive of sensativity here and again I apologize for offending anyone with the recommendation of nutrition.

Now as moderator this irritated me, but as a former sales rep this made me laugh. It irritated me because until this happened the e-mail threads between members had been positive and informative and filled with suggestions on how to improve our health and well-being.  We are all clearly interested in doing so. For her to imply otherwise just confirmed that she was looking to make a sale, not a difference, and when she failed she became defensive. And that is why the former sales rep in me found it funny.

It is impossible not to get upset/defensive/irritated/defeated when you put yourself out there and again and again you are turned away. Sales is a hard way to make a hard living. I learned early on that I sold more because people liked me than I did because I sold a great product. This is where she went wrong. She did not take the time to get to know this smart and savvy group of women before force-feeding them a product which already has a not-so-stellar reputation.

Score one for the support group. Now excuse me while I go adjust the membership requirements for my group. I would hate to see what would happen to an Amway distributor if they accidentally joined our group.