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.