Why is it that we have our most profound thoughts when we are in our worst pain. Perhaps there is something about pain and thinking that has been unmapped and unexplored. Perhaps Pavlov only saw half the picture!! 

Perhaps Archemedis was drowning when he had his eureka moment?! I guess we will never know. All I know is that pain gives me a lot to think about and a lot of time to think. 

The thing that can’t be avoided or ignored is that a chronic illnesses is not fun, glamorous or popular. This puts us in a very difficult place, and not by choice. 

No one wants to show off their pics of their chronically ill family member. No one wants to say “I am so proud of my (insert name), they are sick but they are doing their best! I don’t know how they do it!!”

I haven’t heard those words on the Internet or in the movies or in commercials. We are the forever overlooked and unwanted. And here is the kicker… we did nothing wrong! 

I mean if I had been born this way I might have been a little more accepted or at least not so… Unwelcome. 

But the cards were dealt. 

Strangely enough I have found total strangers, old friends, and of course, my darling hubby, as being some of the most caring and accepting. 

The attitude HAS to change. It’s time! 

I think rapist and murderers get much more public acceptance and public. There are far more rapists and murderers in the work force and in family photo albums than people with “complex” chronic illnesses and autoimmune illnesses. 

We suffer from very bad PR. 

I used to think that it was because we might post or say some difficult realities. But so does everyone. Plenty of people write, post and comment about the sad and annoying minutia of life. Plenty of people make their struggles known. In fact we SHOULD want to know how are family and friends feel and what they deal with. Shouldn’t we??

It is 2016 and while the world is accepting some very ugly truths and difficult social realities…. So why aren’t we allowed on the landscape. Why is there still so much social isolation and rejection? 

It must be hard to watch someone you loved go from being a lot more active, vibrant, successful, intelligent and independant be so affected and limited by these illnesses. And… I get it! It’s hard to see and harder to understand. But so is global warming, stock markets and romance. 

Some things are worth it. Some issues are worth it. Some people are VERY worth it!! I mean we are morally and ethically outraged at animal rights breeches, and social justice issues, surely there is room for the over 100 million (conservative estimate) of us out there that would welcome and value a little of that social empathy.

Do I write these things to point the finger at anyone or put the blame on one group. This would be pointless and futile and has nothing to do with the efforts of so many fellow advocates. We want back in! 

We want back in the hearts and minds of society. We want awareness. We want accpetance. We want to be loved. We want the respect we so richly deserve. We want to be part of the landscape. 

I would love to hear the words “… My (insert name) is chronically ill but I couldn’t be prouder of how they have coped. I love them to death!..”

We would love that lasting, valued and appreciated place in your hearts and minds!

Gentle hugs, 

Trish