Benefits of a Little Understanding

“That’s my bosses’ doctor!” exclaimed a recently retired friend.  I’d just handed her the contact information where I could be reached in an emergency.  Although I hadn’t given her any details beyond a name and phone number, she knew so much more.  She knew who the doctor was and what type of patients he treated.  She knew someone with RA.  She had seen her bosses’ struggles, which gave her an understanding of some of mine.  Next time I saw her, she handed me her bosses’ telephone number and suggested that I give him a call.  Support and a little understanding when I needed it the most.

***

Even before my diagnosis, when my labwork first came back with an elevated ANA, I began my investigation into autoimmune diseases.  Nearly every article I read recommended assembling a treatment team including PT and OT.  I phoned a very good friend who just happens to be an occupational therapist and we had a nice long discussion about what the future might hold.

***

One family member is a med tech who spent ten years running the private lab of a rheumatologist.  In my extended family, four people are nurses, one is a cardiologist, one is a paramedic, and one is a physical therapist.  No explanations were needed when I told relatives about my diagnosis.  Family members are pretty understanding.

***

It hasn’t all been roses.  I’ve had a few of the “Oh, I have that in my little finger/neck, left knee” comments, and one day I exploded, via e-mail, at my husband’s aunt, who asked about my plethora of doctors’ appointments, “I’ve been diagnosed with rheumatoid arthritis, and I’m getting mighty tired of people who don’t know what it is and think it’s osteoarthritis instead!”  Her reply began, “I know what it is because I have a dear friend with RA and I see the pain she lives with every day…”

***

After diagnosis, my symptoms worsened before DMARDs kicked in, and shaking hands during the greeting time at church every Sunday morning became a nightmare.  While most people would shake hands and say, “good morning,” or “how are you today?” I would greet people by tentatively extending a hand and saying, “don’t squeeze.”  Before too many weeks had passed, one woman asked, “What’s going on?” and in our ensuing discussion I learned that her mother has RA.  Another person who understands.

***

My husband, understandably upset about my diagnosis and having had his previous OA/RA misconception shattered, was talking to a coworker.  Said coworker has a family member with RA and was able to provide my husband with the support he needed.

***

When I was in excruciating pain and could barely walk, our music teacher asked what had happened.  I told her my new diagnosis, expecting the common, “Oh, everyone gets arthritis as we get older,” response.  Instead, she gasped, looked horrified, and exclaimed, “Oh, I’m so sorry.  We had a violinist in symphony with that; she eventually had to quit playing.”  Not very cheerful or optimistic, but at least she knows what RA is.

 ***

During flu season, I helped out in the church nursery by covering for a sick teacher one Sunday — only after stipulating that someone would have to be the bad guy and enforce the “no sick kids” policy.  It should have worked.  Unfortunately, a sick toddler slipped through as a late arrival, and this feverish, runny-nosed kid sneezed in my face.  Being new to methotrexate at the time, I was extra sensitive to the possibility of infection and might have overreacted.  Maybe.  Just a little.

After class, visibly upset, I told another teacher, “There is a reason I said, ‘no sick kids.’  I’m taking immunosuppressants.  I have to be very careful to avoid sick people.”  Best/saddest response possible:  “My daughter has lupus.  I understand.”

A week later the pastor approached me and said, “I understand you have an autoimmune disease.  If you tell me these things, I can make sure you’re not put in that kind of situation again.”

***

My adjustment to this diagnosis has been much easier because there are those around me who understand that there is a difference between OA and RA.   Everyone should be so blessed.

I’m posting below the entirety of the IAAM letter.  If you wish to skip it, the gist is that we can work together to create awareness.  Donations are being solicited.  $1 donations, given by enough people, will add up.

What if autoimmune arthritis conditions were universally understood, so you never again would hear, “well you’re too young to have that” or “why don’t you take some aspirin to make the pain go away” or “but you don’t look sick”?  Wouldn’t it be nice if people understood that “I’m too tired to go” meant you were experiencing obnoxious, debilitating fatigue that is not necessarily remedied from rest or a good night sleep? What if there were in-depth, age-appropriate exercise programs in place that catered to different levels of disability and fitness preferences?  How much better could your health be if there were partnerships with retailers who would offer discounts on healthy foods or fitness facilities that would minimize monthly payments for autoimmune arthritis patients?  What if there were a global database of sufferers, family members and caregivers who had the ability to form friendships in order to deal with the daily struggles of disability? Hopefully beginning in 2010 these wishes will start to become a reality.

The “Buckle Me Up!” International Autoimmune Arthritis Movement (IAAM) is an up-and-coming, worldwide nonprofit which will focus exclusively on helping the autoimmune arthritis sufferer*.  Their mission: committed to eliminating autoimmune arthritis, and diminishing the disability associated with it, by raising global awareness and improving the quality of life through education, partnerships and support.  It is a nonprofit formed by autoimmune arthritis sufferers, run by autoimmune arthritis sufferers and, therefore, will continue to address the problems faced by autoimmune arthritis sufferers.

IAAM is not in competition with any existing charity.  Matter-in-fact, part of the mission is to partner with current organizations to assist with existing autoimmune arthritis awareness efforts.  Recently IAAM has joined forces with the Arthritis Foundation and are working on partnering with other arthritis-based charities both nationally and internationally.  Founder, Tiffany Westrich, is personally working with the Arthritis Foundations “Let’s Talk RA” program to restructure the 2010 strategic planning, in which IAAM will maintain an intricate role.  In addition to partnerships, a primary focus is to make a lot of noise, verbally and visually, by re-branding the misconceptions of the term “arthritis”.  Examples include the published web-commercial series, “A Day with RA”, showing the realities of living with an autoimmune arthritis disease, developing the first official autoimmune arthritis charity bracelets, and being featured on MyRACentral.com and WebMDtv’s “RA in the News” (Summer 2009).   They hope to continue this level of exposure in all autoimmune arthritis arenas, including creating web-series awareness commercials for each autoimmune arthritis condition.

If all the autoimmune arthritis sufferers around the world come together, we can make this a reality.  But first, we must raise money to finance the legal fees and start up costs to become an official nonprofit. So, today, many autoimmune arthritis blogs are joining forces to reach out to our community of sufferers for help.  Just like you may see while checking out at grocery stores and other retail establishments, the IAAM is asking for $1 donations to assist with these start up costs.  Every dollar earned will bring us all one step closer to being understood.

To view a complete list of start-up costs and to send your $1 donation,
please visit www.BuckleMeUpMovement.com/donate.

Let’s all work together to bring awareness to our misunderstood conditions! 

_____________
*Currently, we have found the following conditions officially classified as Autoimmune Arthritis. 

  • Rheumatoid Arthritis
  •  Juvenile Arthritis
  • Psoriatic Arthritis
  • Reactive Arthritis
  • Ankylosing Spondylitis
  • Scleroderma
  • Systemic Lupus Erythematosis
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4 thoughts on “Benefits of a Little Understanding

  1. Great post! You’re right; I do think things are getting better. The last few people I’ve talked to about rheumatoid arthritis have been really understanding.

    My voice teacher said, “so you’ve had it for 24 years – how are you still walking?” He wanted to know all about it. He didn’t have it all right, of course, but he knew it was serious and wanted to know more. (Although I did have someone recently ask me if I volunteered with the arthritis society because my grandparents have arthritis. When I said, “no, it’s me,” they were completely shocked.)

    I’m looking forward to reading all of the IAAM posts today.

  2. It’s really encouraging that you’ve met so many people who are aware of RA and how it can affect you, WarmSocks. I’ve not met but one, in real life, but I can now proudly say I know quite a few people online who share this disease with me. I consider them friends.

    This was a great post. I’m smiling.

  3. I love this post. You have some very kind and very compassionate people in your life. I would love to meet just one person (in person, obviously I’ve done that here!) who I didn’t have to explain it to. Thank you, thank you for sharing this!

  4. It was great yesterday, to see so many people sharing their experiences. Not so great that this disease remains off the radar of so many people, but I’m hopeful that we can make a difference.

    @Helen: That’s great that your voice teacher is interested in learning more.

    @Wren: I, too, consider some of the RAers online to be friends. There’s a huge difference between the head-knowledge that I’ve referenced in this post, and having contact with people who walk in the same shoes.

    @Amanda: Talking 3D to someone who’s been there really helps. Why can’t hospitals that offer multiple childbirth classes, diabetes classes, heart attack recovery classes… offer even one group for people with autoimmune diseases? Why can’t rheumatologists set up a way for their patients to meet with one another? Even a “contact me if you want to get together” bulletin board would be an improvement over the zero visibility this disease currently gets.

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