Anyone with an "invisible" chronic illness is painfully familiar with that churning inside that comes from the need for validation and support - for those you care about to accept your illness as being real and every bit as debilitating as you say it is. Over the years, I've come to terms with that and feel that I rarely let people who don't "get it" get to me. However, there has still been a daily churning that had puzzled me. Am I still worrying about what other people think? Am I letting the world get to me, just because I don't look sick? Perhaps, those are still issues, but they aren't really at the heart of this particular internal turmoil...
I've got a good handle on the relationship issues associated with an invisible chronic illness and I think I've learned to cope with it all pretty well. I've accepted that this is just a harsh reality and I try to focus on what I can do instead of what I can't do. Basically, I'm quite a happy camper considering these very trying circumstances! So where's the inner turmoil coming from?! In a nutshell it's quite simple. When I wake up with that profound run-over-by-a-truck sickness, all sorts of alarms and sirens go off! It doesn't matter that this has been a daily routine for many years, my brain is still screaming "Danger! Danger! Something is terribly wrong, Jim!" Of course, I know that! But it's like hitting your thumb with a hammer. It doesn't matter how many times you've bashed your thumb before, you're still gonna say "Ouch!". You're still going to have to deal with the shock to the system, the pain and the healing - and questioning how could I be so clumsy?!
Basically, the churning for me consists of the ongoing need to square things with myself. Not to gain anyone's acceptance, approval or support, but simply to come to terms with the inevitable questions and confusion that comes with an obscure, erratic and debilitating illness...
Do I have the right diagnosis?
Shouldn't I be doing better than this?
Are my doctors using the best treatment or should I find new doctors?
Are they missing something really big?
Is there something I'm doing or not doing that's making things worse?
Is this just the way life is going to be?
I hope this insight is helpful. It can be easy to assume this kind of emotional turmoil is because of what someone said or a self-esteem issue or that you have the wrong perspective - when it's simply part of your inborn survival mechanism being kicked into overdrive by a relentless illness. Trying to ignore or brush it aside is kind of like a fire alarm going off and not even checking to see if your house is on fire...