Cirrhosis Support Group
Cirrhosis is a consequence of chronic liver disease, most commonly caused by alcoholism and hepatitis C. Ascites is the most common complication of cirrhosis and is associated with a poor quality of life, increased risk of infections, and a poor long term outcome. Liver damage from cirrhosis cannot be reversed, but treatment can stop or delay further progression and...
I am 19, female, diagnosed with Cirrhosis February 2015.
First of all, Ive been a silent reader of forums regarding this matter because I am not the sharing type. Ive seen myself as an optimist, but not this time. When I am sad, I write on my journal or keep thinking that things happen for a reason, but Im just tired. So basically, this is kind of a big step for me.
Im sharing this because I have no one to talk to. Or I dont want to talk about this with anyone because I dont know how, or I dont know if I can. And I believe that no one will understand this as much as I do but the people who have the same situation.
Weve been to excellent doctors in excellent hospitals for consultations hoping that the diagnosis could be wrong. Because after I was hospitalized, Im doing very fine. Except that the jaundice in my eyes did not fade. All of them said I am too young to have such disease. Even people who drink every single day could develop Cirrhosis at the age of around 30 or so. In addition to that, I am a teenager who stays away from alcohol. I dont do hard parties, cigarettes or whatever. I live a healthy, yet happy life. Negative to all Hepatitis A, B, and C. But after several labtests, one thing is positive. Auto-immune disease. Wow. Our immune system is supposed to protect us, right? Isnt ironic that the thing that protects us is also the one which destroys us? Hahaha! Adding a little drama there.
Things are going better until they put me on prednisone. Ive been on 30mg a day for a month now. I feel terrible. My face has changed. Got the moonface and pimples. I am afraid to go back to school because I will be facing life outside home. You know what I mean. The confidence and self esteem that used to boost me is all gone. And people will keep on commenting about my face and they have no idea how much it hurts. They have no idea what struggle it is. They will be telling, ooh you were sick but youre fat!, you should exercise!, what happened?!, Im guessing you did nothing but eat! and I can go on for more. I can actually live with Cirrhosis, but whats keeping me down is my looks. It sounds crazy. But it was my strength. I cant help myself from being conscious whenever I go out. I am tired of thinking about this, I am tired of being sad, if only I can rest from all these...
For now, my disease is in control and I am asymptomatic now not like before. I have my monthly checkups and my labs are doing good so I know I shouldn't be stressing myself over my looks.. It seems like everything changed. I am scared of what's comin'. If possible, I would just stay here in my room. But life goes on, so I've got to face this. I can manage my disease alone but with the strings attached, not really.
So there. Sorry its too long. For those who took their time to read this, THANK YOU. God bless us!
First of all, Ive been a silent reader of forums regarding this matter because I am not the sharing type. Ive seen myself as an optimist, but not this time. When I am sad, I write on my journal or keep thinking that things happen for a reason, but Im just tired. So basically, this is kind of a big step for me.
Im sharing this because I have no one to talk to. Or I dont want to talk about this with anyone because I dont know how, or I dont know if I can. And I believe that no one will understand this as much as I do but the people who have the same situation.
Weve been to excellent doctors in excellent hospitals for consultations hoping that the diagnosis could be wrong. Because after I was hospitalized, Im doing very fine. Except that the jaundice in my eyes did not fade. All of them said I am too young to have such disease. Even people who drink every single day could develop Cirrhosis at the age of around 30 or so. In addition to that, I am a teenager who stays away from alcohol. I dont do hard parties, cigarettes or whatever. I live a healthy, yet happy life. Negative to all Hepatitis A, B, and C. But after several labtests, one thing is positive. Auto-immune disease. Wow. Our immune system is supposed to protect us, right? Isnt ironic that the thing that protects us is also the one which destroys us? Hahaha! Adding a little drama there.
Things are going better until they put me on prednisone. Ive been on 30mg a day for a month now. I feel terrible. My face has changed. Got the moonface and pimples. I am afraid to go back to school because I will be facing life outside home. You know what I mean. The confidence and self esteem that used to boost me is all gone. And people will keep on commenting about my face and they have no idea how much it hurts. They have no idea what struggle it is. They will be telling, ooh you were sick but youre fat!, you should exercise!, what happened?!, Im guessing you did nothing but eat! and I can go on for more. I can actually live with Cirrhosis, but whats keeping me down is my looks. It sounds crazy. But it was my strength. I cant help myself from being conscious whenever I go out. I am tired of thinking about this, I am tired of being sad, if only I can rest from all these...
For now, my disease is in control and I am asymptomatic now not like before. I have my monthly checkups and my labs are doing good so I know I shouldn't be stressing myself over my looks.. It seems like everything changed. I am scared of what's comin'. If possible, I would just stay here in my room. But life goes on, so I've got to face this. I can manage my disease alone but with the strings attached, not really.
So there. Sorry its too long. For those who took their time to read this, THANK YOU. God bless us!
I can't imagine the self conscious side at your age, considering how the media has set up an ideal that no one can emulate. Most people your age probably can't understand that different can be due to illness, treatments, birth defects etc. Its fear based, I'm sure you know that. Look for those who are not repelled. They are unique. They may have a family member who has suffered.
You've heard people react to you according to how you present yourself, but, I am sure in your peer group it is particularly challenging and I am not suggesting that the way people react is your responsibility. Its a maturity issue. There is a public awareness campaign to accept others as they are, TG!!!
We are older than you are, but have cirrhosis. Thank you for sharing your story here. We will do everything we can to support you.
Due to mental and physical problems that have come after I got cirrhosis / stopped drinking some 3 years ago,, I have found myself isolating a lot. I am lonely, but it is necessary in order to protect the rest of the world (and myself) from my more and more anti-social behavior (sometimes I am worse sober then I used to be as a repulsive drunk). This story is only relevant to you indirectly - the point is that you are somewhat changed and isolated.
But it is not that bad - I read, study, rest without guilt, research the web, grow flowers, have hobbies and reflect on life and the world (at least I am alive, not in jail, and relatively pain free compared to many other people). And I CAN visit the nearest town any day if I want to.
It is 'unfair' that you have been given your disease so young and without guilt. But that fact can not be changed. If I were you, I would sit down and analyze your situation. Write down all activities you can do at home, which outside ones you CAN do if you choose to, and those that you don't want (i.e. like parties with alcohol / drugs). Then go on living simple day by day. I am sure the solutions will present themselves one by one.
All the best for you.
Roy