The Benefits of Being Your Own Best Advocate

Yesterday, I sat in on a teleconference presented by The Southern California Chapter of the Scleroderma Foundation. The teleseminar’s presenter, Karen Gottesman, is the author of "The First Year: Scleroderma: An Essential Guide for the Newly Diagnosed". The topic was "Being Your Own Best Advocate." She covered the types and subtypes of Scleroderma and provided a wealth of information on self-advocacy and how powerful that tool really is. This seminar will be available on the So Cal Chapter's website.

The seminar was geared for newly diagnosed patients. It was filled with information for "Newbies" and I felt was a great refresher for "Old Timers" like me, who found things out the hard way.

The full time job of managing any chronic illness as a patient can be overwhelming stressful, repetitive, frustrating... I could go on, but I think my profanity filter might malfunction, so I'll end here. Karen talks about the benefits of managing illness as your own advocate and calls it (paraphrase) a Journey, with the ultimate goal of co-existing with the disease. Scleroderma is different with everyone and can take one person in many different directions. Karen really drove the point home by presenting great ways a patient can be proactive about his/her own care and how that advocacy can restore some control. That's potentially comforting for control freaks as well as the easygoing.

One of the topics that got my attention was the "Common Sense Things” that can be overlooked. (Of course I found a way to make this about me. Put your hands on the screen and feel the egocentrism!) Through the years, I have overlooked some of these common sense things Karen mentions, such as scheduling my appointments, getting labs done and renewing prescriptions before I am faced with an empty pill bottle on the Sunday morning of a holiday weekend.(Oh yeah, I've done it.) These seem like common sense items, but let me give you an example. When I have a long streak of feeling great, surrounded by healthy people who don't have to manage the workload related to maintaining their health, I assume: I feel better, so I must be well. I do grow tired of the doctor's appointments, labs, infusions, invasive tests, procedures and on and on. Sitting in on that seminar yesterday for Newbies gave me a much needed boost and reminder to stay on top of things. It brought to my attention those red flags I ignore when feeling well. I am glad I had the opportunity to be reminded of the benefits of staying on my wellness path throughout my journey with Scleroderma.

I would love to read comments from any Newbies or Old Timers out there who had a chance to attend the seminar, or have read Karen’s book. To find out how to get a copy of Karen Gottesman’s Teleseminar, check out the So Cal Chapter’s website. Become a member and get updates and newsletters about the latest in Scleroderma treatment, research, advocacy and to find a support group near you.

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