crohns disease and community

crohns disease has always meant many things to me over these years, mostly private un mentioned things, locked away for a rainy day of 'dishing out' dark thoughts. I know that i was slow on the uptake at 14, 15 .. I knew this illness had put me in places, with people, that i never imagined. The 'shame' of indignity and fear, things you hope to only have to reveal to the closest, trusted loved ones. Yet, i can recall re-running saying things, even then to try understate my embarrassment and fear, to help me, or make a young nurse feel more comfortable!
To be honest, Crohns has given me so many visible obvious things to 'display' to attempt to distract away from the deeper pain that is not so visible. I can pass off a self deprecating comment about an embarrassment or scar, to help me or a doctor , and over the years this has become my shield. I realised that humour or sarcasm can tell the medics how 'big and 'strong' i am, how i can cope and move on.
Yet, over time hidden scars and damage gets worse and infects your being, they can influence your mood and how you see people. They can make you use a shield of protection to show how you cope with pain and more problems with a smile and philosophical retort.
I think i am philosophical and by nature not bitter or angry.
Yet, the shield allows you to accept yourself as a person in the eyes of others, when in reality it hides regrets and wishes, lost loves and dead ends. It gives you an apparent strength when you are really as vulnerable as every one whether fully fit or carrying the burden of illness. It allows you to be content with travelling a journey alone, excepting family and friends that is, when in reality, deep down, the care and love of someone would help carry the burden at times when it gets too heavy for one to do. The shield helps you to maintain a lie a protective force field if you like.
You would think that 36 years should mean you have the wisdom and openness to be in a place where 'what you see is genuine'. In reality its merely time, lost time at that. Time spent being brave when you were scared to hell; time being alone and okay, when you needed someone to hold your hand; time accepting 'this is it' when underneath  thinking is this it?
I know in my heart that this shield is now also a burden. It is a mistake to use it as a protective method. Its harder at the time to be honest but weak and vulnerable, then in the long run let the honesty come out and prevent that very vulnerability to multiply and gain strength.
I know that anyone with any illness but specifically Crohns should just open up at the start, express their 'shame' and fears. they should say they can't do it alone and are afraid what the future holds.
The hardest part is opening up at the start, it should mean you are the one to benefit in the long run.