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Being A Health Activist is Challenging #A4Amonth

Posted by Connie on Thursday, August 23rd, 2012 at 11:32 pm and is filed under Advocate, Autoimmune Disease.
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Prompt: Leading a community isn’t all sunshine and ice cream – it’s hard. Write a post that delves into 3 challenges that you face as a Health Activist.

Whoa, I don’t lead the Autoimmune Community, but I do advocate for it. And yes, it’s challenging, but so rewarding too. Please don’t take these as complaints. This is a reality check though.

As someone who has five autoimmune diseases (Ulcerative Colitis, Fibromyalgia, Sjogren’s Syndrome, Myasthenia Gravis and Rheumatoid Arthritis), I’m tired a lot of the time and hurting most of the time. I’m used to it and have learned to deal with it. When it comes to being an advocate – talking to someone online or on the phone that has questions or is feeling down, writing blog posts like this one or attending a meeting – there are times that I want to go to bed and zone out. My body is screaming for sleep. I need to do some deep breathing to get a handle on the pain. I am in no way a martyr. There are lots more people who do much more than me, but this is how I feel sometimes. My own needs get in the way and I don’t like it.

I get angry when people refuse to listen to facts. People still believe that because you look good, there’s nothing wrong with you. Listen up! Just because we can get out of bed, get dressed and put a smile on our faces doesn’t mean that our pain level isn’t sky high. No one knows what goes on behind closed doors. It may take hours to get ready and that smile is real, but it can be because we’re finally out around friends and doing something fun, or that smile is plastered on. Then there are people who believe that we did something to deserve being sick. I could go on and on, but I’d rather dwell on those who support us and understand.

It’s easy to feel hopeless when very little in the way of new treatments or dare I say “cure” comes around. When I’m explaining the facts or talking someone down who feels like giving up, that tiny little voice sneaks up and says, “there’s not much to offer them”. Be quiet! There’s so much to offer – beautiful flowers and clouds, hugs from children, the wonder of the written word, the kindness of strangers. Live each day and look for magnificence.

Just like in life, there are good days and bad, good moments and bad, when you advocate for a community.

I’m taking part in the WEGO Health blog carnival. To learn more about the Advocating for Another Blog Carnival visit http://bit.ly/A4Amonth.

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Fave Things About the Autoimmune Community #A4Amonth

Posted by Connie on Wednesday, August 22nd, 2012 at 10:24 pm and is filed under Advocate, Autoimmune Disease.
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I’m taking part in the Advocating for Others Blog Carnival made possible through WEGO Health. I chose the community of people with Autoimmune Diseases and conditions to write about.

Prompt: List time! Write 5-10 of your favorite things about your community. Celebrate their uniqueness and be sure to tell us why those are your favorite things.

  1. We are unique. I didn’t mean to steal this from the prompt, but this community is made up of different types of people. We don’t seem to have one thing in common besides having an Autoimmune condition. Yet we gather in real life or online: in support groups and in communities or forums.
  2. We Support Others. Whether strangers who need someone to listen, or close friends who need a ride to the doctor, we do what we can to assist other people. We help raise money, spread awareness and provide referrals to doctors who treat us well.
  3. We are courageous. Many of the conditions we have can lead to other medical problems, but we learn to focus on the positives. We face pain, discomfort, fatigue and many other symptoms, but we don’t let it rule our lives.
  4. We are skeptical. Yes, that’s good. We don’t take things at face value, especially those snake oil treatments that cure everything from hang nails to cancer. We research everything, even medications that our trusted doctors give us. We don’t just accept a diagnosis so we can be dismissed. And that’s where the support from others can come in. They can share what works and what doesn’t, but also understand that each person is different and can react to treatments in a different way.
  5. We are respectful. It’s OK to turn down someone’s advice or to ask for no more advice. When we have bad days, we do our best to vent, but not take it out on others. We accept that we have different belief systems, different financial situations and unique medical conditions. (Some of us have allergies, more than one autoimmune disease or other diseases.)

The best thing we can do as a community is to join forces for research on why some of get autoimmune diseases and to find better treatments.

To learn more about the Advocating for Others Blog Carnival visit http://bit.ly/A4Amonth.

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