Wednesday, November 16, 2011

It just takes some understanding

As some of you know I have a Facebook support group. This group has been a God send with 171 members and growing.  It's a safe haven. Leave the judgements and the solicitations at the door. A place to vent frustrations, share in triumphs, have some laughs, get feedback, and feel like you aren't alone.

I keep reading that last part over and over again..."feel like you aren't alone". Doesn't everyone feel alone at least  a dozen times in their life? Before I had RA I had my "alone" moments. I mean I was definitely the only person who had a little bit of postpartum depression after my daughter was born. I was the only teenager that thought her parents didn't understand her. We were the only family living paycheck to paycheck. I'm not a self centered person but I definitely had my moments before this disease where I felt I was so alone.

2 years ago the highlight of my year was participating in the annual Arthritis Foundation walk. No one I knew had RA. At this event there were hundreds of people just like me. I felt home. My family and friends were there in support. They were there because they love me. So in the next year I started a quest. I was going to find a support group and make some RA friends.

I searched online. I Googled support groups in my area, around my area, then the neighboring states. Nothing. I came up with nothing. Just before last years Arthritis walk I emailed the woman in charge and I asked about support groups in the area. At the walk we met and she explained that there aren't any. I went home and I was determined to prove her wrong and find one. Well I didn't.

My friends and family said "why don't you start one?" Ha! I love you but that is a typical "healthy person" response. Start a group? Seriously? I can't even get out of bed some days let alone organize a get together. I would have to network. I didn't even know where to begin. No thank you!

In July I go on Facebook. I don't know what possessed me but I did a search for Rheumatoid Arthritis. All these pages came up! I joined a few. Tons of people in front of me with the same disease. Some better, some  worse. Some with great doctors, some not so much. Some working, some unable to. ALL lonely until they found this online community.

Enter Peggy. She and her daughter are newly diagnosed. I meet her on one of these pages. I get a friend request from her. I have never told her this but I hesitated. I would be breaking my rule (which now seems to be the mantra of our friendship). I was never friends with anyone I didn't know. Finally I figured what the heck. She has RA too. I need a friend that goes through what I go through. Late one night I see we are both online. I am going to start up a chat. I hesitate. I think "she was just trying to be nice being my friend, she doesn't really want to talk to me". Then again I say what the hell. I message her hello. We start talking. Then our hands hurt from typing so we get on the phone. We talk until 4 a.m.! We have so much in common and from that first night I have felt like we have known each other all our lives. Since then we have either talked or texted everyday. I don't remember which RA page we were on but I am grateful it brought us together.

I don't know what sparked this but Peggy and I decide to start our own Facebook group. We use the name of my Arthritis walk team, Squeaky Joints. Word gets out and people are joining. Next thing you know every one is calling themselves Squeakers. I stop a month later and I think "OMG I started a support group with out even realizing it"! And it's great. I don't have to go anywhere. I don't have to find a place to hold it. Anyone can attend. We have the USA, Australia, Ireland, and England represented. I'm sorry if I forgot anyone.

In the weeks since the group has started I have come to an understanding. I am not alone. Not just with the RA. I am not alone at feeling lonely regarding every day things. I come into contact with lonely people all day and I just don't know their story. The woman behind me with the screaming baby at Dunkin Donuts, her husband just left her and she's lonely. The woman that cuts my car off, she just got told she has breast cancer, she is lonely and just trying to get home so she can cry.

I guess my point is if you feel alone you are not. That is probably the one thing we all have in common, no matter race or religion, besides pink tongues.


  1. I am thrilled to have found you on facebook. Maybe there is a use for that forum after all. Huggers and gentle joints to and for you. Tammy

  2. Good for you for starting Squeaky Joints, I really like it!! :)

  3. It is wonderful that you have started and found online friends. Keep at it! Over the past 13 years I have found many wonderful ra friends. I was blessed to even have lunch with one in England! Yup, England! Back then I don't even think facebook existed but there were boards and I joined one and still regularly visit it today...13 years back I do know that without that first board, I don't know how I would have made it through. Facebook can be a blessing and I will have to check out squeeky joints. I don't use Facebook as much as I first did as my fingers can't keep up with all the typing but I do peek now and then :-)

  4. Thank you Brigid for creating and posting about this facebook group! I have been diagnosed for 2 years but have only recently come to grips with the fact this will be a part of my life forever. I am so grateful to find others who are going through what I am right now. :)

  5. I am trying to join your group, but Facebook is saying it's a closed group, and I can't figure it out! Can you let me know how to join?

    I also have a Facebook "fan page" - you can look for "Remicade Dream" and "like" it! And my blog is at