The thing is, there is no safe place with this disease. Sometimes people are your safe place. And sometimes you just need to feel safe. To not feel alone. To feel the validation that you crave so deeply because of the loneliness and segregation having this disease makes you feel.
If you feel alone and unsafe - what do you seek. Security. Understanding. Support. Empathy. Validation that you are not alone.
When you are the only person that you truly know in the circle of humanity that you surround yourself with, that has a disease that is all encompassing - it IS a lonely place. No matter what - people DON'T know what it feels like to live with this disease. To deal with the changes it causes. The symptoms you feel. The fear that it brings. And that's okay!! Praise God the people I surround myself with don't truly innately have to know. That would mean they are living with this disease. And I wish disease on know one.
But in that "Not Knowing" - is a not understanding -created innocently from being naive' to what it truly feels like. And so of course, people may not remember or realize how lonely and intense certain moments of this disease can be. There is no warning when the fear creeps in and overtakes you. Or the irrational anxiety being alone causes after getting out of the hospital, or fighting the reality of your own mortality - only intensified by symptoms or hospital visits.
People live their lives, get busy, have their own changes and stressors. And in their lives, I think that they/we forget that sometimes giving someone what they need - to feel safe and providing validation (no matter how annoying or silly we may feel it is) IS EVERYTHING. And sometimes - means everything.
We all do it. Live our lives. We are guilty of the "Oh I am so sorry to hear that" when it's happening to someone else, but when it happens to you - It's the end of the world! Right! I mean, it's human nature to be a little selfish and a little self absorbed (unless we're Mother Theresa or the Pope, which we're not) I do it. And if you say you don't, well then....hmmm. We all do to a certain degree.
I think it is that degree that defines us. It is that degree that shows the character of your person.
I don't expect anyone to "Live this disease" with me. I don't. I do try to understand that people are living their own lives, dealing with their own issues, their own caliber of stressor, walking in their own shoes... I don't wish the confusion or the reality this disease causes on anyone - which is why I try (I say TRY ) to be very understanding of other's perspectives. Especially when dealing with my own expectations. Which is a challenge and practice in itself. WOW!
But man - Let me tell you. In complete and utter raw honestly, sometimes you feel so alone and isolated when you are "sick". Especially when you are recently diagnosed. You can be in a room full of people, yet feel so alone it is tangible. It is a scary and disheartening feeling to work through. And as I say, Life is a practice. We make mistakes and we learn from them... and I am still learning. Everyday.
I am learning to voice my needs more and to understand the repercussions of not doing so, the repurcussions of my own neediness (justified or not). But for those of you with loved ones dealing with a chronic, debilitating, disabling, uncurable disease... please remember. Your loved ones are probobly fighting the loneliness disease creates EVERYDAY - even when you are right next to them. So please take a moment to remember, that if they seem needy, reach out or even if they don't..... remind them they are not alone. Validate them. Especially when they ask for it or beg for it with neediness, because the depth of that need is intense. It is real and it is justified.
Again - Like I said before Attitude IS Everything - and I don't live IN my disease... I am just keeping it real and raw and admitting the need that this disease causes......which for me, isn't easy.
Not only am I a self professed control freak - but I'm not used to needing anyone. I was on my own at 16, pregnant with a kid at 17. I did it alone and didn't really NEED anyone to make it.....so this Need thing is new to me. Now I can't make it without needing from someone. I need to feel safe. I need a safe place.
So - when I blog - it is in my rawest form, admitting my fears, my regrets, my needs, my weakness. This IS my Scleroderma. This is my journey. Good, bad or ugly. This is how I feel. This is what is happening to me..... and someone of it isn't as flattering as I wish it was. Especially this. Scleroderma suck and it's lonely.....but it/s not me. But it DOES affect me.
Okay..............there is another craiglister at the door. Dresser be gone. Come on... Do I hear fifty, fifty five - Do I hear sixty? SOLD!! Lets make some money to let the good times roll!
C’EST la vie