RA Blog Week 2017: Day 1: Mental Health

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I am proud to be participating in the third annual RA blog week.  Thanks to Rick @ RADiabetes for inviting me to participate.  I look forward to catching up on everyone’s blogs soon.  I am currently attending the American College of Rheumatology’s annual Advocates for Arthritis in Washington DC.  I will do my best to blog daily for RA blog week and so you can follow my journey with advocacy in DC.

Day 1’s Topic:  Mental Health:  How do you manage to maintain your mental health while dealing with autoimmune disease? Discuss how dealing with RA every day makes you emotional. Do you hide your emotions?

When I first got sick in my early thirties, I went through a serious bout with depression.  It took so very long to get a diagnosis.  I would see doctors with multiple joints inflamed and red, and they would look at me and say “nothing is wrong with you”.  It did make me feel like I was crazy.  When I was finally diagnosed, some medications I was taking made me so labial that I could not function and I even considered ending things.  The pain was so severe.  I felt like my life (as I knew it) was over.  I remember a friend calling and I still swear that call stopped me from doing something drastic.  The next day, I found a psychologist who specialized in chronic illness.  It took about 18 months for me to feel strong enough to end weekly therapy sessions.  In the beginning, I felt like my disease was the end of the world.  Therapy helped me to realize that it isn’t the end of the world, rather it is a different way of living in the world.  I’m not saying that shift in perspective came easily.  It didn’t.  It was a struggle and still is at times.

I had to learn how to be this “new” person who struggled to walk and use her hands but still lived well.  That meant re-evaluating relationships that caused added stress to my already stressful life.  Eliminating social events that were physically draining while finding others that I could actually enjoy.  Most importantly, it meant I had to learn how to deal with my issues and communicate with people instead of allowing my negative thoughts to fester.  The people who appreciated my honestly and really listened are still in my life.  Those that constantly tried to cure me and/or insist that I could still do things if I just tried a little bit harder, are no longer in my life.  I had to learn to put myself first and stepping away from negative relationships was brutal.  It’s an ongoing process to maintain positive mental health.  I still have days where I do break down and I think in some ways that is healthy.  Some days, I need to cry over the fact I have to crawl up my stairs to go to the bathroom because it hurts too much to walk.  Those tears are always so bitter, but releasing those feelings can be healing in the long run.  Bottling stuff up is exhausting.  I don’t always show those emotions to other people, because I don’t want others to feel sorry for me. I am not sure if that is good or bad.  It just is what it is.

Tools that have helped me deal with and maintain positive mental health have been therapy and meditation.  Diet and exercise has also helped me a lot in the past and I know I need to get myself back on track with this.  I definitely eat more unhealthy foods when I am feeling down.

At the end of the day, the best thing you can do is be kind to yourself. I was so determined to “cure” myself early on that I couldn’t appreciate the small successes I was having.  I still have to remind myself how much better I am now that I am on the right medication.  Slowly, I’ve learned to appreciate my chronic life, warts and all.  I don’t LOVE dealing with my chronic illnesses, but it’s the only life I have got and I’m going to make the most out of it.

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Follow me this week as I participate in RA Blog week an the ACR’s Advocates for Arthritis Event.

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

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