Regardless of your diagnosis, do you know others who have the same illness or face similar challenges? Are you involved with a support group? Have you attended gatherings or conferences that focus on your disease?
As many of you know, living with an illness can leave a person feeling isolated and lonely. Although family and friends try to understand, they cannot truly grasp the everyday challenges and emotions that accompany long-term illnesses.
For the first 13 years of living with my arthritis, I felt alone. When I sat in the waiting room of my rheumatologist’s office, the closest person to my age was twice as old as me. Many times I called organizations seeking support and understanding from people with a similar diagnosis, between 20 to 40 years old, but was unsuccessful.
In 1999, I received a phone call that changed my life! A friend offered to send me to a conference in Tucson, Ariz., designed specifically for young adults with rheumatic diseases.
Upon arriving at the hotel, I was overwhelmed by the number of people registering for the event. For the first time in 13 years, I was part of a majority group. Those with arthritis out numbered the healthy people. What a feeling of comfort! Instantly I bonded with people who understood my needs and challenges. It was an amazing experience and an opportunity to make lifelong friendships! I’ve continued to attend conferences across the country to reach out to those who are newly diagnosed and to spend time with friends.
When I returned home from my first conference, I started a local support group called F.A.C.T. (Friends with Arthritis Coping Together). My initial thought was to offer a means of education and support to an age group defined as “young adults.” However, a few years into it, I realized I was almost too old to be in my own group, so I changed the motto, “If you feel like you’re too young to have arthritis, you are welcome to attend”. We are in our 10th year and the ages range from 20 to 80. In my opinion, the best thing about F.A.C.T. is the “F” – Friends!
Being around people with commonalities is important, especially if you have an on-going illness. With the Internet, there are many ways of finding support. Organizations offer educational gatherings across the country designed for the patient, as well as spouses and families.
If you have attended a support group or have participated in gatherings or conferences, please share your experiences. Was it good for you? Would you recommend it to others?
suntio knew
I am looking for support groups in Iowa. Where can I find them?
As a few folks have talked about it here, have you had a chance to check out the AI site? We have a Support System here in Tucson for anyone living with arthritis during the prime of life.
Here is the link to the Tucson group, call us!
http://www.arthritisintrospective.org/ss007az.htm
thankyou
I think it's GREAT that he wants to start a support group! What area are you in? I have friends who may be able to help.
How was the Houston conference? I was not able to attend this year because of a previous commitment. There was a session from Arthritis Introspective on starting support groups which may be helpful.
Thanks!
All of the registration and program information for the conference is on www.arthritis.org or you can go right to the conference at http://www.arthritis.org/jaconference-main.php. There is also a copy of the registration brochure which can be downloaded.
I've had JRA for 41 years now. Growing up I felt like an odd duck - very different and not really understood as the only kid dealing with a chronic disease in my neighborhood school. We didn't have support groups or camps back in the day. When I went looking for a support group as a young adult the ones I found were just not a good fit - everyone was much older and I just couldn't relate to their issues. Like any group, sometimes you got to shop around.
I went to my first AJOA conference in Orlando as an adult in 1999. Honestly, it was a tiny bit scary seeing myself in so many other and yet a new world of acceptance opened up for me. It was so amazing to be surrounded by so many courageous and kindred spirits who shuffled, turned at the waist like me and understood the challenges of living with RA. I reconnected with a number of these fine folks at the first Arthritis Introspective conference in 2007 plus I made a number of new amazing and inspiring friends. I even managed to attend an AI meeting when visiting family in Phoenix. ( I live in Los Angeles)
Last year I volunteered at the Arthritis Foundation's Juvenile Arthritis Conference in Irvine and had the opportunity to hang out with all the young adults and had a blast being the room hostess. If you live in the greater Los Angeles area, I can recommend the Young Adult Network meets in the San Fernando Valley which meets the first Wednesday of each month and Jennifer Ziegler is the contact thru the Arthritis Foundation. Now that I have gotten older - I enjoy my aqua classes and the camaraderie with the Aqua ladies/gents even if I am still one of the youngest ones there. And FYI both Arthritis Introspective and the Young Adult Networks have groups on Facebook.
I once had that same question, "where can I find a support group in my area" My area being Phoenix, Az I assumed there must be a group already set up and active. I contacted the Arthritis Foundation to find out that they did Not have a support group for people my Age, 20-55. So, where to turn. Well, a great new grass roots organization called Arthritis Introspective is on the job. They cater to creating support groups for people with arthritis in the "prime of life" age group.
I was intrigued and started my own support group, right here in Phoenix. It started small, and now has about 20 members.
If you're intereested in more information, please check out, http://www.arthritisintrospective.org/
or e-mail a great friend, and Founder of AI, Kevin, at kevin@arthritisintrospective.org
I agree with your article. I was 19 when I was told I had RA. Since then years have gone by and they have found more types of Arthritis in my body. It felt each year I was unable to do the activites my friends had planed. That everything I did seemed to be very painful and caused me to be in bed for a week or so. It was also tough to find someone who fully understood what I was going through.I tired many times to find people who are like me and at my age level, but couldn't find them. About two years ago I called the Arthritis foundation and finally I was told there was a self help class that I could attend. I meet Lorna Kraemer who was teaching the class here in Tucson, AZ and felt blessed to meet her. I did meet others who were older than me, but was still looking for a group that I was in the same age area. In one of Lornas meetings I got to meet the Director of the Arthritis Foundation and she told me about Kevin & Becky Perciel who runs the A.I. group. I was given Kevins number and made that call. Since then I have been to many get togethers with Kevins & Becky group and have felt very blessed to have a group of people who understands my health issues. Since then Kevin, Becky & Lorna keeps me updated on future events and Kevin gives me a call from time to time on setting up a time to hang out. To end, it does help alot to be in a group and to have support to see you through these health issues.
As I became a teen, I attended a camp for JRA. The camp was in another state and I went for three years. The disease had progressed by then and I was in an electric wheelchair. At camp, I was normal and we had normal teenage dramas. Love affairs, cliques, and comaraderie. We were all on equal footing and we shared what it was like to feel "different" in the real world. Camp Wekandu was an escape but it was also a reality check. And it introduced me to lifelong friends. Friends I still have today.
Teenage angst sent me into denial and the last thing I wanted to think or talk about was arthritis. I focused on fitting in and trying to feel "normal" though I never really did. I had wonderful able-bodied friends who were always there to help me and join in creative ways to sneak out of the house with the wheelchair or lug it onto the city bus in an Odyssey to find NKOTB. Yet my friends could not understand how I felt about being in a chair, having crooked fingers and Prednisone puff--how I felt like boys didn't like me and never would/could. I shut myself down and never let anyone know.
Ten years later. Finally, at age 24, feeling overwhelmed with life, feeling too different and alone, I called my local AF chapter hoping there was some kind of support group available. They told me about an upcoming conference in Tucson, a conference for young adults with arthritis. I registered and prepared for an information-filled weekend that would equip me with the tools needed to form a YA group here in Milwaukee. I never expected to meet a new family. I didn't even take a camera. I never knew I'd find the home I so desperately needed. This was the same conference Annette attended and it was the beginning of a beautiful friendship and the creation of a support system that has been growing ever since.
Today, the family that was formed in Tucson has grown and we have friends across the country. We have created our own support system and we have also recognized the need to reach out to those who haven't been so fortunate to find others to share with and rely on. So we have created Arthritis Introspective (www.arthritisintrospective.org), an organization dedicated to helping people living with arthritis in the prime of their lives. Through our website, newsletter, local support systems and our annual Gathering, our goal is to connect people living with arthritis, sharing challenges from dating to medications to creative ways to wash your hair with stiff shoulders.
I invite others to visit the AI site and join us. I could not live without my arthritis family and there is nothing like talking to someone who truly understands what it means to say, "I can't move today."
This blog that Annette has started is an excellent way for us to share and connect and just one more way for us to help each other make it through life with arthur. We are all in this together and no one needs to face this alone.
I enjoy following your blog and I think it provides an environment where other people with RA can establish a sense of connection while gaining information and insights about the disease.
As an active blogger and someone living with rheumatoid arthritis, I commend you for your efforts and wanted to bring to your attention news of an approval of a new medication.
The U.S. Food and Drug Administration (FDA) has approved SIMPONITM (golimumab) for the treatment of moderately to severely active rheumatoid arthritis, active psoriatic arthritis and active ankylosing spondylitis. SIMPONI is the first patient-administered anti-tumor necrosis factor (TNF)-alpha therapy that offers an effective once-monthly treatment option. As you are aware, RA, psoriatic arthritis and ankylosing spondylitis are chronic inflammatory diseases that result in pain and inflammation, and in some cases, joint destruction and disability. These diseases affect more than three million Americans combined. SIMPONI is available via a novel autoinjector device, which has been specially designed for arthritis patients and multiple grip types.
LINK: http://sev.prnewswire.com/health-care-hospitals/20090421/NY0210021042009-1. html
On behalf of Centocor Ortho Biotech Inc., I would like to thank you for efforts in raising awareness about RA through your blog.
Sincerely,
Brian
Brian Kenney
Corporate Communications
Centocor Ortho Biotech Inc.
I STRONGLY encouage all people with arthritis to find a support group in your area. You should be able to find one by going to the arthritis foundation website or calling your local chapter. If there is not a support group for you in your area, then start one! With so many people with arthritis, there have got to be more people who would like to get together to be friends and share information and support.
Leave a Comment