Saturday, June 30, 2012

Promoting Understanding of Chronic Illnesses

There are millions of visible and invisible illnesses out there. There are even ones that medical science hasn't even named and which they are totally baffled by. I should know it took years for them to diagnose me. 

My symptoms reared their ugly heads when I was a teen and then went into remission. Periodically they would pop up and then go away. In October of 2006, they came to stay. However, I wasn't until 2012 that I was finally diagnosed with Mixed Connective Tissue Disorder. Mixed Connective Tissue  Disorder has overlapping features of Lupus, Rheumatoid Arthritis, Sj√∂gren's, Polymyositis, and/or Scleroderma. 

Over the years, I've been told that I have been faking my disease by some people. I've also been told it is all in my head (yup, that's where Chronic Migraine's resided). I have been told by a dear friend, "I don't think you want to be well". Still others have told me that I don't have enough faith. Still others want to lay hands on me to be "HEALED". And when I wasn't, it was because my faith wasn't strong enough. Doctors have argued in my presence as to which of a variety of diseases I have and then because I was an RN have them say, ""which one of these do you think you it is" I must seriously consider never going to that ER again)? 

Yet at at some point or other for whatever reason, somehow someway the person with disease (me) is found defective, guilty, and/or lacking in some way because the medication/treatment isn't working and according to the assumptions of friends and family members you should be well. These statements, although said with the best of intentions and are made in order to motivate us to health, are hurtful. Until now I hadn't found a good way to explain chronic exhausting long term pain to them.  That was until I came upon a video which explains Lupus and other chronic illnesses through the story of Spoon Theory. I hope it touches your heart and the hearts of your loved ones as it did mine. 

Character picture and video are provided by Christine Miserandino. The video is available in this format on youtube and a slightly differnent format on the website

No comments:

Post a Comment