Literacy's Invloved with Coping with Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome By: Kari Grosser

It was a cloudy December day and I was driving down a hilly, curvy back road on my way to work when all of the sudden when I tried to push down on my break pedal it would not go down. The next thing I remember is a man running up saying "Is anyone alive?" My car had hit the guard rail head on and the rail had come through my car, pushing the dashboard on top of me and thus pining me in my car. After getting cut out of the car and airlifted to the hospital I was told that my worst injury was a broken hand and wrist. Considering myself lucky was an understatement.




As the months went by and the cast came off the debilitating pain never stopped. I went to numerous doctors. Some told me that it was all in my head, while other doctors told me that pain after breaking a bone is normal, learn to live with it. About six months after my cast was removed I was sent to pain management therapy. After they had tried every medication there they decided to refer me to yet another doctor, where after eleven months, and fourteen doctors I was finally diagnosed with Reflex Sympathetic Dystrophy or otherwise known as Complex Regional Pain Syndrome. This condition is a progressive neurological condition. Often times a minor injury like a broken bone, sprain, simple surgery, or even a bug bite can trigger the onset of the condition. If caught with in the first three months RSD/CRPS can be treated, although most people go much longer than three months before even being diagnosed correctly. Here Dr. Elliot Krane explains what this condition is like:





Getting diagnosed can be a confusing time. I was glad to finally know what was wrong yet terrified at the same time from the prognosis. An article published in the Journal of Rehabilitation Medicine titled "Coping Strategy Use: Does it Predict Adjustment to Chronic Back Pain After Controlling for Catastrophic Thinking and Self-Efficacy for Pain Controlling?" written by Woby, Watson, Roach, and Urmston stated that "the coping strategies employed with CLBP could be one factor that partly influences how well they adjust to their symptoms." (p.100), thus suggesting that how well one copes with a diagnosis can impact how they adjust to their symptoms, suggesting that how well one copes can impact how they feel overall. There are many forms of literacy within coping with RSD/CRPS which include online forums, Facebook support sites, as well as local support groups which provide the support one needs to cope with RSD/CRPS. Within all of these groups the common discourse community, those affected with RSD/CRPS, are able to bond together, and provide support and hope for others who are going through the same thing.

In this technological era many people have the ability to find support from others online. For those affected by RSD/CRPS, online forums are a great way to be able to connect with others who are sharing the experience. The online forum, RSD Laughter, is a site where people can go and share their experiences with the condition. On this site there is a wealth of information, anything from listings of local support groups, information about chronic pain, postings on fundraisers for a cure, as well as treatments that others have tried. Here people have the ability to talk freely about what they know, have been through, and reach out for support from those similar to them. The literacy practices that revolve around coping on this site are all very similar, they all a re written in an informal and casual writing style and they all provide a positive and supportive nature to each other. This is important within coping with this condition because chronic pain can be very taxing on someone, physically, emotionally, and mentally. Being able to freely express how one feels can do wonders for a person as well as give them hope for a better tomorrow. On other RSD/CRPS support sites there are many people who share poems which they have wrote. This literary expression helps many people not only cope with RSD/CRPS themselves but it helps share with others the words that they might not have been able to find. An example of an RSD/CRPS poem found on the International Reflex Sympathetic Dystrophy Foundation written by Mrs. Jackie McComds in honor of her husband who suffered from RSD:

RSD? What does it mean?

It causes so much pain I would like to scream.

You wake in the morning and all day thru.

It's constant, constant pain and nothing you can do.

In later stages... they say there is no cure.

We Pray they find one. That's for sure!

It's hard to deal with all that goes on.

Being in pain from dusk 'til dawn.

Anger, depression, mood swings, I could go on and on.

Then some doctors think. It's all a Con.

Drugs, drugs, and more drugs... you must take.

Starting from the moment we awake. No one really understands what we have.

Too bad there's not a magic save.

So to all of you, who know how I feel, The ones who KNOW the Pain is real.

Hopefully someday in the end we will win.

Guess we just have to wait and see and pray they find a CURE for YOU and ME!

It's not in our heads. The Pain is there.

Please Doc, show consideration, show YOU care.

Until there's a cure, we all must cope.

So DOCTORS... PLEASE LISTEN TO US, IT'S NOT FOR THE DOPE!!!!!

The American RSD Hope website provides numerous poems that tap into almost every emotion providing support to those who are experiencing those emotions, or difficulty coping with what they are going through. Often times it can be hard for anyone to find the words to truly explain how they are feeling. Poems are a great genre of literacy to be able to explain those emotions in words. For those who read these poems, they can feel like someone else understands what they are going though, and this notion of not being the only one can help them cope with what is going on.

A key aspet of coping with anything is the ability to share what you are feeling and receive support and hope from others. The RSD group on Facebook provides just that. Group members have the ability to communicate from all over the world, and share what they are going through, as well as their feelings while also getting support and hope from others. Being able and willing to do so can be seen as active coping. The article "Adjustment to Chronic Pain: The Role of Pain Acceptance, Coping Strategies, and Pain Related Cognition's" published in the Society of Behavioral Medicine by Esreve, Ramirez-Maestre, and Lopez-Martinez explained "active coping where patients attempt to control their pain or to function in spite of their pain...". By actively coping the the codition those affected have a better chance to express how they are feeling and live, in spite of their pain. A group of people actively coping can be found on Facebook's RSD/CRPS Research and Developments page, which currently has just shy of 3,000 likes. On this site there are many different literary practices that can be found. One form is simply posting something to the wall. This form is a very casual for of writing and content contains people seeking/providing support, sharing stories, sharing treatment experiences and more. Another form of literacy found on this site are links to medical journals and academic articles. Many people pots information that they have found online about numerous things pertaining to the condition. This is a way to help others cope because it provides hope for the future by showing others that there are doctors that are interested in and are working towards a cure for RSD/CRPS, and nothing provides more hope than that!

RSD/CRPS can be a difficult condition to cope with because there are not that many people who have been diagnosed. Online support groups are the easiest way to connect to others but another way to cope with RSD/CRPS is to go to a local support group. Cincinnati has a local organized support group that I was lucky enough to get to observe. While at the group I observed a vast amount of literary coping strategies. The first type I saw was simply people informally talking about their experiences to each other. This was to me what seemed to provide the most hope for others there and inspired everyone to keep moving forward. Another literary form I observed was the formal speaking from medical professionals that gave advice on treatments, medications, and shared insight about research being done. This speaking was from a member of a different discourse community, who altered their speaking to better suit the community in which they were addressing. At the end of the session I got the opportunity to talk to Lisa, who had been suffering with RSD/CRPS for almost seven years from a minor fall. I asked Lisa what she has found most helpful in term of coping with RSD/CRPS:
"You know this is a difficult condition. We spend years being told we are
crazy by numerous doctors to finally hear that we have this horrible
condition that at this point is untreatable. They tell us if we came
to see them with in the first three months we could be cured, but now there
is no way to cure us. One doctor even told me that pain builds character so
I should be thankful to have chronic pain. For me the most helpful way to cope
with that news used to be Skyline's chili cheese fries everyday, but now i think
the best tool I have found for coping is this group. They are my new family. We
can talk, laugh, cry, and just throw a fit, and everyone here understands
exactly what you are going through. Being here and able to do that makes me
feel normal again. So being able to come here and talk to everyone and feel
normal and like i am not a diseased outcast has what helped me the most to
cope with RSD/CRPS."

During my time with this support group I learned about many different types of literacy's that are involved with coping. More importantly I discovered that these different genre's of coping all had a bigger meaning, they made people with this condition have the ability to express themselves in areas where they did not have to worry about being judged. They could be able to feel like themselves again, which can be rare for people with this condition.

In life we all have to cope with different things. Some people cope with the loss of a job, the loss of a loved one, or even a illness. For some people, like myself, they have to cope with Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome. Through my observations I have discovered how many literary genres there are that are involved with coping, such as online forums which showcase poems, Facebook's RSD/CRPS group, and local support groups. One moment can always change your life being able to cope with those changes is what matters the most. It is always important to remember to never take your health for granted.

Works Cited

Esteve, Rosa, Ramirez-Maestre, Carmen, Lopez-Martinez, Allicia E. "Adjustments to Chronic Pain: Coping Strategies, and Pain-Related Cognitions" The Society of Behavioral Medicine 2.33(2007):179-188. Ebsco Host. Web. 22 May 2011.

Woby, Steve, Watson, Paul J., Roach, Neil K., Urmston, Martin. "Coping Strategy Use: Does it Predict Adjustment to Chronic Back Pain After Controlling For Catastrophic Thinking and Self-Efficacy For Pain Control?" The Journal of Rehabilitation Medicine 37 (2005):100-107. Ebsco Host. Web. 22 May 2011.