Letter sent to Share Care regarding Daily Strength, the new format, the loss of members

i sent this letter to sharecare, the parent company for daily strength.  not sure anything will happen, but i am praying .....i'm sure the letter has errors........and now i'm all tuckered out........i just want to feel heard about this.......the phone numbers listed for daily strength in LA don't work........can't get a live person at Sharecare downtown Atlanta do i sent a letter via the sharecare site.  maybe this is nothing more than a swan song to say good bye to this place.......i'm still holding on but the level of hope diminishes daily. 


hugs!



Hello,

I joined Daily Strength in 2010.  The old format was overburdened, but the set up was wonderful.  It gave connection for so many people like me.......disabled with limited energy........it became a resource for information.  Medical, physical, emotional.......and in time it became a neighborhood of friends.  For someone like me.....the folks I became friends with at DS it was a Godsend, truly an answer to prayer.  

The new format brought a new level of challenge for people like me, we struggle with brain fog, pain and very limited ability to interact regularly with the world outside of our doors.  These connections, these friendships became a lifeline, a place where you could feel needed......a place that felt like home in a way that others may not understand.  When illness radically changes  your life, when you can no longer be a part of the work force, have to surrender your career, social life, time with  family and well your life as you knew it........finding a place like Daily Strength provided hope, joy, and real connections over time.

The new format was hard......a lot of my good friends gradually gave up.  They were unable to make the switch.  A lot of us hung in there trying to make sense of it and be a part of the community that meant so much to all of us.  But over time the friends have given up, there is also a reality that it has caused quite a few friends to suffer depression as this new link with others who are locked in to a very restricted life became a difficulty instead of a plus.

The site as it was designed before was user friendly.   It was interactive in the way the different areas allowed connection between all of us.  We could see hugs......we could go to a board and see what was going on, and it was always busy......a lot to talk about.  The new format allows these things but in a different way........it's as if  a gray curtain has come down on so many of my friends.  

We struggle with flares/crashes.....most of us have a  combination of diseases and syndromes that severely limit out abilities.......do you know how I found Daily Strength originally?  I was sitting at my computer crying.......because I felt so alone.

I bowed my head, i prayed to God and said I need daily strength.........when I lifted my head up I got this urge to type in the words Daily Strength and it let me to Daily Strength.org.  

It was all kinds of amazing.......originally I got lost seeking the sites best suited for my needs, but in time and thanks to the kindness of the people on this site I was directed to boards that were a better fit.  For while I was lonely, it's not due to an inability to talk to others, it's not because I'm looking to date or because I have any kind of social anxiety.......it's because I'm sick and still need community, friendship, those close and uplifting interpersonal relationships.

When you become disabled you can't keep up with the life you had......over time the friends you had disappear.  This is not just something I've experienced, but this has been shared by so many on the boards at DS.  

The reality is that the new format is not as much fun, it's not as open or easy to navigate.  You can get there ......but it feels like I'm travelling through the site in the closed trunk of a car.  It's scary, frustrating.......hard to cope with.  Since the new format regular interaction with longtime friends has now all but disappeared.

They have given up, tired of trying to cope with the issues and the huge lack of that former neighborly fun uplifting site that united us......that made us mentally stronger.  That helped us physically with ideas and recommendations for health care professionals, for how to live with disabling conditions.  In particular how to live life as  you transition through the stages of grief and come out seeking a life that is now about joy, faith........finding purpose again.  

I have made some good friends around the world, so much so that we talk on the phone sometimes, that we exchange Christmas cards, birthday cards and such.  We've shared gifts, ideas......hope, endless hugs and so much heart.  

Now we're all scattering to the four winds.........it's  been so hard.  I journal and now hear from one sometimes two people here and there.  The board for Chronic Fatigue has all but died.  It's so sad.......and so debilitating.

I wrote a letter several times to the Daily Strength administration via DailyStrength.org and received essentially the same form letter information every time.  Its hard to respect a site that changes so radically that they wipe out the hope and connection for a group of real people with real problems that now have to deal with depression from the loss of what you used to offer.

I'm tearing up..........I think of my friend Darla who said she just can't cope with the depression she felt coming to Daily Strength now.  It's just too hard.  My friend Elle gave up, my friend ........well let's just say the list is long and the heartbreak is huge for folks like us.  

We're already in our homes more than a healthy person could ever imagine.  We can't go and do when we want and even when we can we can't go and do with our former abilities.  But with Daily Strength I made huge inroads adjusting to this new life because on this site I felt heard and understood.  Healthy people can try to understand or say they understand, but in reality they can't really get it.

And when we get to talk with other folks like us we find out that the symptoms we struggle with are common for our health issues.  On our own we don't always know what to make of what we are experiencing.  Many doctors have little knowledge of CFS/ME, many disregard it entirely..........in my own circumstance I have CFS/ME/Fibromyalgia, Sjogrens's Syndrome, Osteoarthritis, High Blood Pressure, Severe Acid Reflux, Barrett's Esophagus, DVT's/ PE's.......and sadly more.  Thyroid Disease.....sleep issues varying from hypersomnia to insomnia.......my glands hurt every day.  My temperature fluctuates, I'm often achy, cold or hot........with pain in my joints, muscles and nerve endings.  It's a lot to take in.........the majority of these diagnoses were provided within a year of getting really ill twenty years ago.  It was a lot to take in and a lot to take on.

But if you're like me you push to keep on........to keep on working , to keep on being a person having a life so I continued to work from 1997 to 2010.....and finally had to call it quits.  I was so ill at that time my level of function was beyond low.  

I had to grieve loss of career........I served as the Director of Information Services for an international Atlanta based energy engineering association.  I went from that to slippers and pjs round the clock.  My life had been changing for years but now I was benched.  

Daily Strength helped me turn that time in my life around. it helped me figure out a plan to laugh and smile again.  It helped me figure out how to live with illness and find hope, joy ......strengthened faith.........it was a time of renewal and change.

Not every day is perky or perfect, that's not the goal.......the goal is about the journey..........and Daily Strength provided that road to take the journey on.

I'm still posting some, but it's become a ghost town.........I can almost see the tumbleweeds rolling along in the wind.  

If I had the ability or strength I would like to return the site to it's former format......give people like me hope again.  I need help and don't know where else to turn............I've thought about it alot......trying to imagine what the next ten years will be like without the support/love and hope I found though this site.  It's daunting and very depressing.......Daily Strength was a very unique and wonderful place for folks like me..........it's sad that the site still exists but not in a way that unites us.......it's left us behind like so much of the life we used to have.........

I can't imagine that is the purpose of this site........to leave us hurting in this way.

If this is considered too long or too honest or too ?, please try to consider that I have suffered with these quality of life altering changes for 20.5 years......some of the folks here much longer.......and then there are those searching to find what is happening to them........the new format doesn't foster growth and connection like the old site.......so the newbies get lost in the shuffle like those of us who have been there a long time now fall through the cracks.

Is there any way to bring the former format back?  Improved but still very much like what we used to have?  It wasn't perfect either, but compared to the new format it was HEAVEN on EARTH .........

Thank you for listening.  I hope to hear from you.........prayer is key.

Sincerely,

Ruth Bennett

Replies

1sugarbear
1sugarbear

Ruthie,

Excellent letter. I hope that they will at least response.

I must have written Daily Strength 6 or 7 times last year when all of the changes were taking place & I always got the same "rubber stamped" reply back. Once I even asked them if anyone there was able to read English. Used the "user friendly" term myself on several occasion.

Now I mostly boycott the site as it is just as hard to deal with on a regular basis.

How is your week going? Mine has been very bad. My hot spells have been lasting most of each day & they completely wear me out.

Hugs...Bear
JenBen01
JenBen01

Ah, my darling Ruthie. Hope springs eternal, eh? I hope they listen, but I doubt it...this site doesn't make money for them so why would they invest more $$ here? Regardless, I am grateful we met here and I love you! <3

Hug hug.
triunfadora
triunfadora

Beautiful Ruthie, I agree! You expressed it very well. It has been heartbreaking to have these changes mean a loss of connection with dear friends. I also miss hearing more from Darla. I used to be on every day and checking the boards. Now, I rarely bother. So, thank you for doing this. Love you.
KneeDeep
KneeDeep

Its a very good letter Ruthie.I miss Darla as well. I am not a member of the CFS board,but I get what your saying. Connections are important especially when dealing with issues of health.
Grief is what I feel from you. I am sorry about the loss of your friends and connections here with the new site.You can count on me as a friend Ruthie. And I mean that.♥ you and greenies
aussiedi
aussiedi

Well some of us daggy ones are still here...like me lol! I'm not leaving. This is my social scene. Big time baby !! Can't live without you....what was that song from way back ? Hey Ruthie...great letter. You're the girl for the job for sure. You really said it all. Wrapped it up ever so nicely. Yep good one. Bloody beauty !! as they say here in Aus. Well the Aussie ockers do. I'm not such an Aussie ocker. I'm more sophisticated daarrrling.lol! Oh dear.... sleep deprivation pins me to this bed and then I get to annoy you. Aren't you lucky. I've been here for days and only my fingers are moving. Energetic little buggers compared to the rest of this half dead body. Geez what a raw deal. Maybe I really did run over a hundred chinamen in my last life. I had plans. My big plan for today is to do the DS hop and maybe watch the midday movie here in my room. I can't make it to the lounge for netflix or Big pond movies. Now when you've had CFS for as long as me, ,you already know that whatever midday movie is on...you've seen it a dozen times before. It's true. They keep showing the same ones just to punish me. Maybe I will hobble to the lounge later. See a new release. Hobble like a 90 yr old. Well maybe that's a wee bit optimistic. I feel like I'm 100 today. Got the stuffin knocked out of me girlfriend. Hang in there with DS Ruthie. Maybe something will shift again and the good vibes will return and some of the goldy oldy friends too. It's possible.
I do worry about people who were cut off for various reasons and pray they're not struggling with loneliness. Nothing worse when you're really ill.
OK well I'm off..going to roll over...just to add some variety to my dirty rotten sick day.Grrrr. Snarl. Love you always Ruthie blue eyes from The Sparrow Cottage.xoxoxoxo
Massageonthego
Massageonthego

Well said sweetie!
I hope they bring the old format back.
This new one so isolating.
Send me a line if you want to chat!
Hugs Colleen