Although I can only speak of my own personal experiences, I am only too aware of the many millions all over the world who battle their own pain on a daily basis.
When most people think of pain they may think of a time in their lives when they experienced a break, a fall, surgery, or some incident that caused them pain for a specific amount of time. As the days passed their pain lessened and they healed. However, for hundreds of millions of us all over the world pain is a daily part of our lives and we will never heal from it.
I really don’t know how we all cope with it day after agonizing day, but the truth is we have no choice. This pain is not something anyone would choose for themselves. Ever. And it is why we will try anything to get relief. Anything.
Probably the only thing worse than bearing this pain on a daily basis is having to justify or convince someone that your pain is real. That’s why I don’t bother anymore.
If someone, either through ignorance or unkindness, does not want to believe in the pain that I endure I simply move on. I can’t afford the effort or frustration in trying to convince them. Doctors, friends, family, peers, acquaintances all get the same response from me; my absence.
I find myself genuinely lost for words when the occasion comes and I am asked to describe my pain. The first thing that enters my mind is “which part?”
In every part of my body and everything I do there is pain.
Over my life time I have been no stranger to pain, having had a burst appendix, gallstones, third degree burns, kidney stones, Ross River Fever, Meningitis, car accident, broken foot and ankle and so on… however the every day pain associated with all these autoimmune diseases is truly beyond words and so much worse.
On top of the everyday pain that stops us from walking, grooming, driving, eating etc there are flares of pain like Trigeminal Neuralgia; also called the suicide disease. The pain is torture. Beyond torture.
There are cluster migraines that are excruciating and isolating.
There is bowel pain where I have told my GI that I feel like an Alien is trying to burst through my stomach like the movie.
There is nerve pain, joint pain, muscle pain, tremor, spasms (spasticity), bowel pain, stomach pain, migraines and many other symptoms, and almost all are invisible to the casual observer!
And on top of this physical pain, that starts the moment you open your eyes, there is the emotional pain that never leaves you either.
I am a positive and fun loving person but I have considered ending it all more times than I can count! The pain is that bad! In fact countless Autoimmunes and chronic pain sufferers have chosen to end it all. I only wish they didn’t have to make that painful choice.
Knowing that I must live with this pain for the rest of my life, and that it will likely worsen progressively, is more than I can handle emotionally, so every day I try not to think about the next day, and just try to live moment to moment. Many autoimmune sufferers do the same. We have to.
I am not too proud or too embarrassed to admit it is more than I can handle many times. I am not made of stone. I am not some sort of super hero that feels no pain or vulnerability, and so I have periods when the pain can break me emotionally. It is an incrediblely isolating and lonely time.
I am always saddened by the fact that when I feel this way, or when my autoimmune brothers and sisters feel this way, we are often told to simply cheer up and are offered mountains of anti depressants and some counseling by people who have no idea of the realities we live in. It is quite insulting!
Imagine for one moment that tomorrow you had to wake up and have your career, life, identity, mobility, independence, social life, meals, privacy, finances, relationships, security and future taken away forever, how would you feel?
I imagine you really couldn’t imagine it with anything close to accuracy and so I hope you never have to.
The simple answers to this scenario are pain and outrage. Anger and disappointment. Sad and frustrated. Hurt and isolation. And I am all of these.
I have tried to use these emotions to some positive means by advocating, educating, connecting and raising funds for research, but none of this activities takes away the pain that haunts each and every moment, the tears shed daily or the deeply felt losses that must be endured.
September is pain month, and like a fighter in a terrible war, my heart and thoughts go out to all my comrades. You are in my thoughts and heart more than you can ever know. YOU are the reasons this little blog started and why I keep going even when it would be sweet release to simply give in.
To those who do not have these diseases and daily battles please, I beg you, cherish your health and abilities. Never take them for granted.
But most of all, spare a respectful thought for those who dont have your health and abilities and who are, even now, fighting the hardest battles in this world. Show them the respect and kindness they deserve.