Some days my heart just aches over the incredible loneliness and isolation, the sense of abandonment, in our Gastroparesis community. This is not the first time I have written about this subject, and perhaps the message seems old and tired to those outside of our GP world; nevertheless, I cannot help but address it. It cries out to be heard as I scan the posts in the groups and in my feed. The physical effects of this illness are devastating, but the emotional aspects are every bit as difficult to bear, if not more so.
Some truly have no family – perhaps they never married, bore no children, and their parents have long since passed; others technically have family members but no longer enjoy contact due to physical or emotional distance. Perhaps they have a family, but not one that sees, not one which seems to care. Once close friends have deserted these poor souls as well, unable to cope with the changes brought about by illness. Our illness impacts every part of our lives. It causes physical agony, often leaves us homebound, and generates anxiety and depression; it taxes us mentally and emotionally to the point where we view ourselves as burdens – too much effort required, too many sacrifices demanded from others. How can we expect them to remain by our sides?
And so, the stories flow:
“I need to see my doctor, but there is no one to take me. I can’t get to the store, either, and I am almost out of my medications. I am too sick to drive myself and I don’t have the money to pay for a cab. What am I going to do?”
“My house is a mess, but I am too tired to clean. I can barely take a shower without passing out. How can I possibly mop the floor? I asked my sister if she could help me just this once, but she said she has her own life and her own problems – she can’t take on my responsibilities, too. I know she can’t drop everything and come over, but could she, for once, try to see what I go through? She’s my sister, but she acts like a stranger. No one has time for me, not even my own family.”
“I used to love my job – and I was good at it, too. But once I got sick, I had to give it up. I thought I was close to my coworkers but not one so much as bothers to call me now. I feel so worthless and lost. I would give anything to be able to go back to work – be around people again. I miss that.”
“No one invites me over anymore. I guess I have had to cancel so many times that they just don’t think about me now. Besides, I am no fun when I can go. I mean, I can’t even eat, and I am too tired to stay long. I don’t blame them. Who wants to spend time with someone who doesn’t have the energy to join in the party?”
“He asked me out, but I had to turn him down. I have been in a flare and the pain and nausea are really bad. It’s not like I can go out to a restaurant and carry a vomit bag! How am I ever going to find someone if I can’t even get out of the house? I’m only 18 years old. I should be out with my friends, not lying on the couch sick. I am going to be alone forever. Who would want to be with someone like me?”
“My dad told me not to talk about my GP anymore. He said if I would stop being so lazy, it might go away. He told me he is tired of hearing about a disease I made up for attention. He doesn’t get it. Can’t he see how I am suffering? I am wasting away in front of his eyes, and, yet, he refuses to see. How can he be so cruel? If he doesn’t understand, when he sees me every day, how will anyone else? If he doesn’t care – and he is my father! – there is no hope for me. No one will ever understand. No one will ever care.”
“I asked my daughter if she could stop by for a few minutes this weekend, but she told me she is too busy. I know she has her own family now, a job, friends – but I feel like she doesn’t know I exist. I raised her. I held her in my arms as a tiny baby. I sat up with her so many nights when she was sick or crying over some boy. I took care of her. And now she couldn’t care less about what happens to me. Did she ever love me? Sometimes, I don’t know. Am I asking too much to expect a visit every now and then? I mean, I am her mother. How can that not mean something?”
“I thought my husband cared, but then he told me he just couldn’t cope with the constant negativity anymore. We stopped going out because I have been so sick, and I guess he grew tired of listening to me talk about how bad I feel. It hurts. We were close once. I thought he cared. I thought he meant the vows we took. I thought he would always be there for me, you know? But he said he didn’t sign up for this. He found someone else, someone who doesn’t have so many issues. Is this all I have to look forward to? Is this how things will be the rest of my life – alone, abandoned?”
“I can’t do this anymore. I have no one. No one. Nobody listens and nobody cares. What is the point of going on? This is not living; it is existing. Why can’t I just die and get it over with, end this suffering? It’s not like anyone would notice I am gone.”
“I could die alone in this house and no one would ever know. They don’t call. They don’t come over. They don’t even write. I’m already dead to them.”
“I want to call someone – just talk for a while, hear someone’s voice. But there is nobody. I picked up the phone and realized… there is no one to call. No one at all.”
“I am alone tonight, like every night. I wish I had someone with me. They wouldn’t even have to talk – just sit by me, hold my hand. I get so tired of being by myself. Sometimes weeks go by and I don’t hear from a single soul. I want a hug. I want someone to wipe my tears and tell me it will be okay.”
These stories break my heart. How can they not? My people feel abandoned and forgotten – and many are. They need a cure, certainly, but more than that, they need human contact. They long to find love but cannot imagine anyone being able to see past the pain, pick up the hardship, and commit to a relationship. They need friends, lovers, companions. They need to know someone cares, that their lives matter in the grand scheme of it all. They need to be listened to and comforted. They need a warm embrace, a gentle caress, and a soothing word. They are empty and need to be filled.
Open your eyes and hearts to the need which surrounds you. We do our best to support these solitary souls, but online groups cannot replace “real life” human interaction. These people need you. They need your presence. They need to feel your touch, hear your tender words, to know someone, somewhere cares. Remember them. They seek only a moment of your time. Is there anybody out there? Anybody at all?