Everyone has dreams and plans. Everyone wants to live a peaceful life with freedom and enjoyment. So, how can I miss it? I had also lots of dreams, plans have thought for a better future. But all dreams, plans, and thoughts have been broken into pieces and gone into vain after knowing and diagnosed with an incurable disease called systemic sclerosis. A kind of rare auto-immune disease and it doesn’t have cure only signs and symptoms can be managed through drugs and steroids. If it is untreated than slowly it will be progressive and destroys the internal organ like heart, kidney, and lungs but lungs are more likely to collapse in this disease’s patients. The most visible symptoms of this disease are tightening and hardening of the skin. I have seen what kinds of people of this disease and have been already damaging the internal organs but fortunately, I haven’t developed internal organs damaged.
I have a problem with getting an ulcer in hands and feet and difficulty getting healed and take a long time also it has affected bone and after getting ulcer/wound that infected/affected bone comes from the wound and it’s such a pain. I was 6 years old when I was diagnosed with this incurable disease. At that time I was just a kid so I didn’t know anything only my mother and father knew about it. I’m growing up with time and able to understand the situations also getting mature. I was studying in class 7 and at that time everyone can study and able to understand. I was curious about my condition and I kept asking a question myself ‘what is going in my life?” why I’m always getting sick?’’ Am I diagnosed with some kind of disease and am I unaware of it? These questions, thoughts and curiosity were rapidly growing up. I thought how would I get the answer about it, who will help me to get the answer about it?
Finally, I got to the conclusion about it and thought my answer might have been in the hospital’s opd card. Immediately I searched it and found it then I quickly turned the page but I couldn’t understand the doctor’s handwriting. I went through pharmacy and asked them what is written here and they told me everything which was written in that card as well as my incurable disease name. I had no idea nor heard about it. So I searched it on Google. After searching it what I found that was shocked me. I’m diagnosed with an incurable disease called systemic sclerosis. It can’t be cured. After knowing this I couldn’t accept myself. Thought “how could I be?’ Tears was full of eyes was sitting in the darkroom. I couldn’t face myself. Frustration, anger, and irritation were running in my head. Finally, I dared to accept myself the way I’m. Again I searched it thought there might be others people also who are more severe than me and I found there are people who are severe than me even their internal organ has been destroyed and I thought “at least my internal organ hasn’t been developed yet, I should accept the way I’m then finally I had decided to accept myself. And I have been trying to make happy but it is difficult. I like to hang up with friends, want to share it with friends but I have no friends. Due to the cause of this disease, I can’t move on. Whenever I try to get out but I can’t. I have been hospitalized since the day of the nursery class. So I can’t even attain a regular class.
It’s been 14 years I have been doing my treatment at Dhulikhel hospital and the economic or financial condition of my family is very poor. Whatever has earned that has been spent in my treatment and has taken a loan and it is difficult to manage. I haven’t got any charity from any foundation. This causes me really hurt and break my heart. I just blame myself “if I weren’t born then it wouldn’t happen like this”. Day by day thoughts is increasing. During school time, I didn’t have that kind of friends who could understand me only just the name of friends and still not. No, any days have gone without pain, No any night has gone without tears. When the light off my tears starts to fall and that tear soaks the pillow. Whenever I see other people think I wish I could be like them. I have been cheated, lied, broken, rejection, and failed. The person who was supposed to stay and support me has left me in the throne of place. Failed to make parents proud, failed in studies, failed to be a good person and failed in my life. Rejection, cheated and heartbroken has been part of my life. Cheated by friends. I can’t do anything whatever I want to do I have to be depended on people. I think I’m useless, I’m living in vain. I have been suffering alone, dying every single day and living with regret and still no one with me. Only my parents haven’t given up on me. Support me whatever I need they fulfill it. Whenever I look into my parent’s eyes they deserve better kids than me.
I always get cut off in the conversation, no matter how much the part is small or big I always left behind. I always have to wait for people but for me, no one waits even 1 sec. I have been living with suicidal thoughts for 3 years and couldn’t fall asleep until the taking of medicine. Thoughts have been controlling me for 3 years. I still can’t bear the pain. I really want to tell I’m not feeling well, I may be dared to cut my throat and I’m anxious, I need help to get out from it” but to whom should I say no one is there. This time I have been admitting for multiple times at the hospital. No one comes to see me and sill I’m at the hospital. While staying at the hospital I have to face criticism.
No one understands my disease even the medical people can’t. Whenever I open social media then I can see in their pictures that my friends are enjoying and having fun. Laying on the bed and watching those things again it kills me. So many things that I want to do and desire in my heart. In class 10 I couldn’t concentrate on studies. SEE was near and couldn’t concentrate. Suicidal thought was controlling me still It is. Rejection, cheated, heartbroken I can’t bear and leads me towards the depression. I always stay in darkroom yelling, crying, and even I harm myself when I get angry or frustrated.
I have had an ulcer in my right foot’s toe and it was completely infected and bone came through the wound. For it, I have been admitting for multiple times. During the staying at hospital Suicidal thought has been turned into a Suicide attempt. Pain which can’t be tolerated, people are leaving, the heart is continuously braking, feeling no reason to live If it is continuously going like this and I can’t live my life the way I want then what’s the point be alive. One night I couldn’t fall asleep, crying whole night thought “suicide is an option” and I almost killed but suddenly I closed my eyes I remembered and thought about mum and dad then I stopped. “How could I do this” if I do this, mum and dad can’t live and I can’t hurt them cause I’m hurting, I can’t let them suffer cause of me”. My parents are the reason why I’m still alive otherwise there is no reason to live. Still I’m admitting at the hospital, still that thoughts are in mind, I have been under sleep medication and taking medicine for anxiety disorder and continuously going to the psychologist and counselor for counseling but still, that thoughts are in my mind and still sometimes I harm myself.
I’m trying to get out of it but something happened and can’t. I’m still feeling depressed all day. Pretending to be happy and smile as nothing happens and no one cares. I have been living with suicidal thoughts for 3 years and I’m still fighting for the sake of my parents because they can’t see me broken. I have been suffocating because of this disease. Living with suicidal thoughts isn’t easy for me it’s difficult to hold inside the heart. I have been never invited for anything but it is ok I’m used to be. I wanted to do lots of things, so many dreams but that all has gone in vain. I know my disease won’t go away. People come in my life and leave me like tissue paper is ok I’m used to be. I had one big dream to graduate from abroad universities like the USA but now it’s all broken and still is ok I’m used to be. I had never thought that one day I would have to stand and come in this way where no reason to live. I have done a lot of mistakes but I’m getting punishment where there was not even my fault.
Frequently, the trust has been broken. Everybody judges me on the basis of my health condition. I have been taking medicine for 13/14 years. Everything seems hopeless. A person who once told me “I will always be there for you no matter what, call me I’ll be there for you no matter what” Has left me when I needed the most. Everyone keeps saying “you aren’t alone, we are with you, we care you and listen” but the bitter fact is no one that’s why I choose to be alone instead of being in the between of surrounded people. I never celebrate my birthday I think it is the worst and black day of my life so no reason to celebrate. No one with me and I also don’t celebrate. Physical pain sometimes almost kills me and I’m depended on the painkiller. After all, I have to live with this disease. It’s not that life hasn’t given me chance, life has given me lots of opportunities in fact opportunities have knocked the door but I couldn’t use those opportunities and I’m still holding that regret and can’t let go. Most of the people discourage me and hurt me but it is ok I’m used to be. I’m dying every single day but it is ok I’m used to be. I keep saying it is ok and moving. Feeling hopeless but still, have hope. I know it won’t be alright but think someday it will be alright. Someday I may be overcome by this thought and get out of it. Maybe someday this shit things will be over. I’m hoping and someday it will be alright and moving on. Just hoping even though It won’t be….
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