What Does It Mean To Be A Patient Activist? By Robert

To me this is a topic very close to my heart. The hardest part of being diagnosed with a chronic condition affecting the rest of your life is the initial feeling of bewilderment and of feeling helpless and alone.

When I was diagnosed with Ankylosing Spondylitis, I like probably everyone else that was diagnosed before me and since, had never heard of this condition. I hope soon that with all the great efforts of a great many people, that will not always be the case. I hope that awareness can be raised to an extent that doctors themselves are much more familiar with the disease and diagnoses time can be significantly decreased from the current approx 10 years from the onset of early symptoms.

If it wasn’t for the advent of Social Networks from the likes of Facebook & Twitter and personal blogging, it could be a very lonely and isolated place not being able to enjoy life to the full and sometimes feeling on the periphery of life.

Friends and Family, although sympathetic don’t really know what you are going through as they can’t always see physical evidence of the effects of the Civil war being fought inside your body. It would be nice if we could wear a little traffic light on our heads that picked up the pain signals sent from the frontline of battle and switched from green to red depending on the pain scale on that particular day to alert those around us of what kind of shape we are in that day and please treat us accordingly.

Through searching out fellow sufferers via social networks a vast weight of burden is lifted (especially in my case) as we all become in our own way, however big or small a patient activist to someone. From being worried about a new medication and associated side effects, a new or extremely painful pain flare or just having a general bad day. All it takes is a quick tweet or post on Facebook and the support comes back at lightning speed from fellow sufferers with an encouraging word here, or advice from previous experience that can lift the spirits and help us get through the latest problem.

Through the use of Social Media in linking us to so many like-minded individuals all over the world, the world in turn feels a much smaller and comfortable place. Feelings of loneliness and isolation previously felt can be diminished from a feeling of, as Mulder would say “We Are Not Alone”.

Many of us don’t actually know anybody near where we live that are going through the same daily problems as we are. We may have to drive many hours to talk with another fellow spondy in person, over a drink and a natter. Something that is very difficult to do. Through a few clicks of the mouse however, we can meet up online any time of day or night with new friends. Here we can share our problems and worries and we no longer feel quite as isolated or alone. This can be medicine in itself, lifting us from the depression caused by feelings of frustration and pain and not being able to vent these emotions on friends and family all the time for fear of damaging our relationships.

My favourite Activist and Awareness Schemes so far have been the fantastic Hope and Apples Campaign and World AS Day that took place during April 2011. These events were a great way to concentrate people’s efforts and reached out to so many people across every part of the Globe. Through this I met many fantastic friends online that I now consider part of my extended Spondy Family. Through the Hope and Apples campaign, People were encouraged to share their stories with each other and spread the word about our invisible diseases. To show to “non Sufferers”, be they friends or family and help raise awareness and help them understand what Ankylosing Spondylitis is and how it affects every person differently. We are not all affected the same and one day could be functioning and feeling relatively normal and the next a completely different story. I like to think of it as a bit of a Jekyll and Hyde condition. Always keeping us on ours toes as to what kind of day we will enjoy.

In summary all it can take to be a  Patient Activist is helping just one other person through a kind word or a bit of encouragement online. That person will then be invigorated to help another, thus adding another person to the Spondy Family. In time the family will continue to grow and go from strength, one person at a time to become a movement that can really make a difference in spreading hope and awareness far and wide to the larger community as a whole. Hopefully one day when people experience prolonged early onset back pain, Ankylosing Spondylitis will be more in the forefront of Gp’s minds. It is my hope that years can be cut of the diagnosis time and medical routines can be implemented early in the disease before large amounts of damage are already done.

After reading this please reach out and help just one fellow sufferer today, to help many more in the future.


5 Responses to “What Does It Mean To Be A Patient Activist? By Robert”

  1. I loved it!

  2. Kazzi-K on June 20, 2011 at 21:13 said:
    Brilliant entry Rob! Keep up the good work!

  3. Jennifer Dye Visscher on June 20, 2011 at 20:47 said:
    This is a wonderful post! I’m thrilled to have so many friends and fellow AS bloggers working on Awareness and supporting one another. We are stronger together – as my friend Amanda at United Voices for AS says “together we can set things straight!”

    I look forward to reading your blog – great start my friend!


  4. Jennifer on June 20, 2011 at 19:40 said:
    Fantastic post, Robert!

    This was my favorite part: “Hopefully one day when people experience prolonged early onset back pain, Ankylosing Spondylitis will be more in the forefront of Gp’s minds.”

    I also really like your idea of the stoplight that changes colors based on our pain level. At times, anything that would help our disease be a little bit less invisible would be really helpful.


  5. Cookie on June 20, 2011 at 16:14 said:
    Remarkable! I even called Kelly and read parts of this to her over the phone. I loved it, absolutely loved it. I can’t wait to see more. Laughs I know that my opinion is just my opinion but I assure you I am not a sugar coater no matter what my name is. I speak only my truth in how I feel. Remarkable job Robert

    Reply ↓
    @brother_berto on June 20, 2011 at 16:41 said:
    Brilliant thanks very much, you’ve made my day

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