Living with Sickle Cell Anemia can be a very lonely thing. Most people don't know what it is and if they do know their knowledge is limited. Aside from that we feel ostracized somehow for having an illness we did not ask for. When you try to explain to friends/family their understanding is limited because they cannot comprehend the extent of Pain that we go through.
As for myself, it is even harder for me because my tolerance for pain is high so when I explain to friends/family that I am feeling sick somehow those words cannot truly translate what I mean when I say I'm feeling sick. Many times because of the tolerance I've built up I can walk around with a smile, even laughing and doing normal things while in the midst of allot of pain. It makes no sense to anyone else that one could be in so much pain and yet on the outside look fine. This is the trouble I run into when around family and friends. Okay so I will now try to find the closest words I can to define what I mean when I say I feel sick: I feel stabbing pains as though someone were taking a knife and would stab me continuously with it to the point of feeling paralyzed (unable to move my arms), I would feel someone taking several needles and like with a gun shoot me with them all over my body front and back by several people at the same time, I'd feel someone crushing my bones as though all they wanted was for my bones to turn to dust, I'd feel someone twisting my bones to the point of them snapping into two, I would feel someone like the incredible hulk punching me in my stomach as though trying to get through me to the other side of my back. There are so many more analogies I can give that wouldn't give the pain I go through justice but I am left with only words. Words that can only go so far yet my pain continues from there. Think of all the examples I gave above and imagine feeling all of them at the same time. WOW. It's beyond this world how painful it is.
When I go through a crises and while someone is beside me they see my body convulse in pain and all I can do is grab something, anything for help. Many times family or friends will stand beside me in my pain crises and be clueless. Let's go a little further and imagine a doctor or nurse standing beside you as you go through this endless, excruciating amount of pain and they say no. No, you will not receive anymore pain medication. What would you do? Seriously? Would you sit there quietly and just take it or would you fight with whatever you have left to get the one thing that is capable of relieving your pain~>pain medicine. Some people that I have had by my bedside have seen me in the most painful of times but are so clueless that they instead of sympathizing with you or at least try to help instead criticize me in my battle for relief.
God is awesome! He alone knows what I go through. I remember him when I see the heartlessness of others. At times, death seems so close when in the midst of such excruciating pain. I fear many times my body not being able to take any more pain yet because of my God I survive. He is my rock whether or not I have the understanding of people by my side. I sometimes wish some people could feel just for five minutes the hell I go through on a constant basis. But they can't so they're left in their cocoon of how they feel when they are sick. They compare my Hell to their head-ache or their stomach cramps which is so menial compared to the pain I go through. Not to say that their pain is not justified but to limit me by the pain they've only known is UNFAIR!