Can We Get A Respectable Disease Over Here.....Please....

Do you ever wish you had something else.....almost anything else other than an invisible illness that is suspect and misunderstood???  Well I sure do - every day.  I know that is counter productive and silly but it is the way that many of us feel!  I remember way back when I was first diagnosed with ME/CFS - I was relieved and I told a friend in a support group how thankful I was that it wasn't something else.  Then when Fibo was added and then Osteoarthritis and Paget's Disease and so on and so on, I realized that with these chronic illnesses we have the same quality of life as someone with MS or Parkinson's Disease.  But.....we are vilified, accused of being hypochondriacs and worse on a daily basis.  We fight for disability in a way that those with more respectable diseases don't have to.  No one wants to talk to us about how we feel or what is going on with us.  These conversations are avoided at all cost.

Please don't misunderstand - I don't want sympathy or anyone feeling sorry for me or my situation.  I don't want to drone on endlessly about my symptoms, I and most of us, just want to be understood.  We want to be treated in the same way a person with one of those understood believed in types of illnesses are.  I know this may sound petty to someone who is not traveling this path with us, but it makes our journey harder each day.

How many times have you been in a situation that someone asks about your health and you don't want to say what the actual problem is because you don't want to see that look on their face??    I believe all of this has come to the surface again for me because I am in the process of completing my SSDI Update Report and it brings back all of the memories and looks of disdain I experienced when first filing for disability income.  I worked 34 years of my life - many years after I was first diagnosed and fought to keep working way too long and therefore I will admit to being a little over sensitive about this topic.

I can't tell you the number of times I have read in reports that ME and Fibro alone can be as debilitating as MS or other neurological diseases.  When will this become a commonly understood fact??  I tell my husband that one day, long after I am gone, I hope there will be understanding for what we live with and people will say.....I can't believe how hard it was for those who came before us and were misunderstood.....