I posted this in some of the Facebook support groups to which I belong and wanted to share it here as well. I would dearly love to reach those of you who are struggling with gastroparesis and who are not a part of any support groups right now. If I can help you, please contact me at firstname.lastname@example.org.
I realize that some of you do not know me, and so this post may seem a bit odd to you. I apologize for that. I get a little mushy sometimes and have to post these kinds of things. I have many friends here, and this is the only way I know to reach them. I just want you all to know how thankful I am for everyone here, how much I care about you all, and how badly I want to help. You are the first thing on my mind each morning and the last thing on my mind each night. I come into the groups every day, and no matter how poor I am feeling, I know someone here will understand. I see how much time, effort, and care so many of you put into this group every day, and I am so touched by your dedication. We are all sick; yet, so many of you take the time to come in here every single day and try to make a difference for others who are struggling – people you do not even know. You give advice, offer insight, comfort and pray for those who are hurting, and just generally do whatever you can to make others feel better and help them get through the day. Sometimes, all anyone can offer is a kind word, a little encouragement, a story, or even just a little sticker comment. But you know, sometimes that is enough. Sometimes that is what makes the difference between hope and despair for a person who sees no light at the end of the tunnel. I want you to know that you are important and that what you do matters. You mean the world to me, and because of that, I will never stop fighting for you, for us.
I want you to know also that I see the physical agony you endure on a daily basis. Beyond the struggle to somehow meet our nutritional needs without experiencing tremendous pain and nausea, I see that many of you are in and out of emergency rooms, must tolerate frequent and/or lengthy hospital stays, and are forced to suffer through seemingly endless surgeries and procedures. I see that many of you have no effective medications and that you are denied insurance coverage for the few necessary medications, treatments, and supplies you do have. I see that you are frequently mistreated and even downright abused by a medical community that lacks knowledge, understanding, and the will to help. I see that many of these same medical "professionals" lack even the desire to help -- and treat you as if you were nuisances to be dismissed without so much as an ounce of concern. I see that you are made to feel humiliated; that you are treated as hypochondriacs and drug abusers; that you are pushed out their doors without receiving any help and without any guidance as to where you might go for such assistance. I see that your pleas for help are ignored, mocked, and fall on deaf ears. I read stories from those of you who cry out in agony while lying in a hospital bed being denied pain medications. I hear you when you say that the doctors tell you there is nothing else they can do for you, and I see the anguish this causes you and your loved ones.
I want you to know that I see your personal struggles as well as your physical struggles. I see how so many of you have no one. You have no one to fight for you, and you have no one to comfort you at the end of the day. You have family members who do not understand -- who sometimes do not even make the slightest effort to understand. You have friends who have deserted you. You have financial hardships. Some of you live alone and do not even get the chance to feel a comforting touch at the end of the evening. There is no one to take you out; no one to help you complete the household chores and errands; no one to even talk to you or hold you at the end of the evening. That is a huge burden to bear, even for a healthy person, but to have to endure it on top of a chronic illness... well, it is overwhelming to think about. My heart breaks for you. I wish so badly that I could change your situation. No one should have to live that way.
Most of the time, I have a very positive attitude. I have never believed in giving up or not fighting, and so I post comments that reflect that. I am very blessed. I have a fantastic support system within my family and a strong belief in God. I pray for us all every day. These things are of great help to me. But I know it is not that way for everyone here. I cannot take away that pain, no matter how badly I desire it; but I can tell you that you are never alone here. I care. So many people here care. I realize it is not the same as being there with a physical presence, but I hope it helps you some to know that so many of us are here for you. I can also tell you that I am not willing to accept this situation. I am not willing to say that we cannot change our circumstances. Many of us are fighting to change things. We are writing our elected officials; we are contacting the media; and we are pushing medical facilities, insurance groups, and anyone else we can think of to do what is right. We are fighting for research funding, for better treatment options, and for better educated and more compassionate medical professionals. We are doing everything we can think of to help. I hope when you see our posts regarding petitions, bills, and letter-writing campaigns, you will know that we are only doing this because we care and we want so badly to make things better for all of us.
On a personal level, I want you to know that I could not get through a single day without you all. And although I do not always have the answers to all the problems, I care deeply. I see your posts, and I feel your pain. If there is anything I can ever do to help, you need only ask. I am not the most knowledgeable person, and I cannot make all the bad stuff disappear, but I am totally and passionately committed to our little community. Every single person here matters to me, whether I know you personally or not, and I will do whatever I can to help you. (I am sick, like you, so you might have to be patient with me; but please know that I am trying, and I will not forget you or desert you.) I hope you feel how appreciated and loved you are – and how much I want to help. I value you all, and because of that, I will do whatever I can to fight for us and to change our situation. Thank you for all you do! And please do not lose hope! <3