the forgotten and misunderstood....
I have a friend/co-worker who was diagnosed with colon cancer several months back. She had a surgery to remove the affected part of her colon and has been undergoing chemo therapy. Her last treatment was yesterday.
Don't get me wrong. I am very happy for her that her treatment is over and that she is currently cancer free. With that said, I watch all of the posts on FB showing support for her, sending her hugs, putting posts for cancer awareness or saying how proud they are for how strong she has been.
It takes every ounce of energy in me not to post something about how everyone is aware of cancer. Everyone knows how bad cancer is. Everyone sends hugs and messages to those with cancer.
What about those with chronic diseases? what about awareness for those of us that can't cry because our tear production is diminished? What about those of us that are in pain with every step we take? What about those of us that choke on fluids because our pipes are dry and take medications that surpress our immune systems? What about those of us that have absolutely no hope for a cure and are told constantly that our disease is progressive and that treatment is symptom based??? Where is our awareness?
It drives me absolutely nuts to read the constant posts in support of those with cancer but when I used to post things I would get comments about how I should push harder and not give up. But than I feel selfish for feeling this way so I keep my mouth shut and scream on the inside!!
Don't get me wrong. I am very happy for her that her treatment is over and that she is currently cancer free. With that said, I watch all of the posts on FB showing support for her, sending her hugs, putting posts for cancer awareness or saying how proud they are for how strong she has been.
It takes every ounce of energy in me not to post something about how everyone is aware of cancer. Everyone knows how bad cancer is. Everyone sends hugs and messages to those with cancer.
What about those with chronic diseases? what about awareness for those of us that can't cry because our tear production is diminished? What about those of us that are in pain with every step we take? What about those of us that choke on fluids because our pipes are dry and take medications that surpress our immune systems? What about those of us that have absolutely no hope for a cure and are told constantly that our disease is progressive and that treatment is symptom based??? Where is our awareness?
It drives me absolutely nuts to read the constant posts in support of those with cancer but when I used to post things I would get comments about how I should push harder and not give up. But than I feel selfish for feeling this way so I keep my mouth shut and scream on the inside!!
Replies
I am glad that your friend is doing better......very glad.
And you are so right in your abject frustration....if people understood what chronic illnesses are, what it means........the debilitating impact on each person affected there would be a change in the response. It is hard, no two ways about it........want to knock down that wall.
Other diseases like cancer draw such a well of support and encouragement. Education has garnered public and individual support. Our conditions need and deserve that same level of care and kindness. People do not understand that we have quantity of life, but the quality of life is forever changed. That we suffer to get through each day and grieve the death of dreams, abilities and energy. The effect on us, our loved ones, our daily lives are never the same. We have moments of light, but we never have what we had before.
We don\'t have the physical stamina to change the world, be spokespeople to educate about our conditions...it is hard enough to express the impact to those closest to us, let alone the world at large.
We have all dealt with push on, try harder, keep fighting, don\'t give up...comments like \"well you look good\" or \"you don\'t look sick\" or been told every manner of nonsense. I still have so many who think if I just ate differently or took more supplements.....that I\'m not trying to help myself in some way. I have been given the glazed over look if I talk about it, I have been shut out of many people\'s lives and/or given a wide berth. People with chronic illness know all too well the inappropriate responses and the sounds of silence.
I am so sorry that you suffer not only from your conditions, but the added disconnect from those you need support, kindness, respect, care, gentleness, and compassion from on your journey. I found more heart, understanding and care here at DS then I ever found in real life. I rarely go on facebook. It is hurtful to me......I can\'t keep up with them, I can\'t do what they do, most of them do not understand or relate.
I don\'t want to have or create the negative thinking and emotions facebook can bring, so I put my energy elsewhere. I seek positive reinforcement as much as I can from those who do get it, do understand....seek to share the road and lend light to my path. Facebook is not all bad, it is just not the right place for me, so I let it go. I make other choices.....I am sorry for all you go through, feel and hurt over......it makes me so sad that there is such a serious disconnect from others.....they don\'t have even a glimmer of what we survive on a daily basis......
Gentle hugs, understanding and space in my primal scream room is always available for you......no lines, no reservation required....you can let it out, scream, cry, vent or share anything.......appreciate the branches you have lent me from your beautiful willow tree more than I can ever say.......you have a beautiful caring heart......