This blog is my perspective of the challenge for a blog carnival on the topic What Would Rheumatoid Awareness Mean to You? from RAWarrior.
Rheumatoid Awareness Day 2/2/2014
What they cannot see, what they do not know … impacts my life significantly everyday.
I feel invisible. Misunderstood. Ignored. Criticized. A diagnosis changed my life with a long list of debilitating symptoms that others cannot see and do not understand and thus, they do not recognize.
When I was first diagnosed in 2009, the rheumatologist looked at me and said “you need to get rid of the deer in the headlights look and get on with your life.” As I left his office my only thought was “How? How do I get on with my life?”
I didn’t even understand what I was now dealing with, much less how to proceed like nothing had changed, because everything had changed.
In a perfect world Rheumatoid Disease would be understood – by everyone. I thought about this on a recent trip to an aquarium. I stood and watched the Beluga Whales as they gracefully moved around the tank, stopping at the front as if to pose for photos. There are guides who can tell you all about Belugas. That is, they can tell you what they know scientifically – but they cannot tell you how the Belugas really feel being in that tank.
A Beluga was born to roam the ocean and being in a tank is very different, even with all the special precautions taken. If I were a Beluga I would wonder what happened. One day I could move about without restriction. I could go anywhere I wanted. I did not feel hindered or limited in any way. I could feed when I wanted and was not dependent on someone tossing a meal my way. I could be in control of my life, instead of something or someone else controlling it. I could take care of myself in case of threat or danger.
WAIT !!! – that’s how I feel with Rheumatoid Disease.
I live with the reality of Rheumatoid, but if I could dream I would see a world where people really understood the impact of this disease. My family, my friends and even strangers I encounter would be understanding, compassionate and concerned. They would know enough not to make silly recommendations for a quick-fix remedy. They would be supportive when I needed help and acknowledge when I need to adjust my responsibilities. They would also support research and education for Rheumatoid with the same enthusiasm other diseases receive. I don’t want pity, I just want people to understand.
I want drug companies and marketers to understand that I don’t fall for their slick advertisements. The pretty pictures and videos only contribute to the misinformation the public now has. There needs to be a dose of reality – of what this disease really looks like – it’s not gracefully walking down a beach or swinging a golf club. This can be a devastating disease – don’t just sell a drug, teach me and the public about the impact of Rheumatoid, develop educational programs in addition to supportive materials for patients and families on how to cope better.
I want hospitals to develop educational and support programs (especially nutritional, fitness and daily living adjustments) for those with Rheumatoid and other autoimmune diseases in the same manner they do programs for cancer, diabetes and heart disease.
I would also like to see the medical organizations, like ACR, embrace more patient involvement in their conferences. I know there is some patient advocate participation currently, but there needs to be more. We desperately need to bridge this gap and work together for a better tomorrow for Rheumatoid patients. There are aspects in medicine that patients may never grasp, but there are also aspects from the patient’s point of view that medical professionals could benefit from. Commit to work together.
Medical providers could greatly enhance their care of patients with better education and interaction. Often you are given a diagnosis and nothing else. Education is a simple fix by having available a brochure, a list of resources, a referral to a foundation, etc. Anything to read to begin to understand this disease. After my diagnosis, I was given a legal release to sign in order to get the medication and directions to the laboratory for bloodwork.
I want my physician to make a deal to be a partner with me in this journey – listen to my concerns, talk to me, answer my questions, commit to make the decisions WITH me for my treatment and care. Treat me and not the HAQ. I have important information about my health and it needs to be recognized. I want my physician to respect the time I have spent to prepare for our appointment. This is life changing for me, it is not a situation to be mocked or shrugged off.
This disease may be textbook to the physician, but I am not a textbook. I am a person with pains and fears and new inabilities that have replaced my previous abilities.
Last, I dream of a foundation that would truly support the patient with education, advocacy and a voice in the medical community. That foundation currently exists, the Rheumatoid Patient Foundation, but it needs more support to accomplish the abundance of work that will benefit all Rheumatoid patients.
If they only knew. If they only understood. That’s my dream.
I would not feel invisible to my physician, to my family, my friends or others around me. I would know that others understood my struggles and would be there with support, encouragement and comfort. I would not be criticized for making excuses or being lazy when, in fact, I just can’t do something. I would not be ignored when I can no longer handle a task and need help, or just a break from the responsibilities. That world is one of support and understanding and hope.
I like the thought of that world – it’s like the Beluga when he is returned to the ocean and says “Yes! Yes! This … This IS the way it is supposed to be.”