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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Keeping Chronic Illness a Secret


#1

Hey all! I was just diagnosed with PCS about a week ago. I don't know yet if I have any other illnesses that usually tag along with PCS such as ulcerative colitis. Hopefully these answeres will come soon. I am starting this discussion because I feel that I would like to keep my health a private matter and a secret from my friends and family. I was wondering if there was anybody else on this site that is doing the same or has any comment or advice.

The people surrounding me have known I was sick for the last five months, but I didn't have a diagnosis yet. I couldn't have a conversation with anyone without first giving them a detailed update about my liver. (I call him Oliver... I'm a dork, I know. But in these situations you have to be a little silly) A lot of people didn't even ask me questions; they just expected me to give everybody a call after my biopsy, MRI, you name it, to update them. I'm a very independent person; I've been supporting myself since I was 16. I'm also an introvert. I'm really not interested in people's pity, and I also don't want the people that mean the world to me (my wonderful wonderful brothers) to be worried or feel bad for me. I understand that if I do die early from this (hoping for the best), then some people may be upset because they didn't know. But I would hope that they could understand that the best thing they could have given me was to let life go on normally.

I worry that I will struggle with this because I have a very hard time not being fully honest with the people I love most. The reason I love and trust these few is because they are willing to share their whole selves with me.


#2

Hi Lily,

I'm sorry that you have had this recent diagnosis of PSC. I have had it for 3 years now. One thing that has really been a help to me is to have my family and friends involved. I know everyone's situation is different, but I think it adds to my overall health and well being to be able to openly share with them what's going on. I even have an email list set up that when something major happens, I send out a report. It keeps me from having to repeat the same thing over and over to people who inquire. You might consider that if you are not one who is comfortable speaking of these things openly. But I do believe that keeping all this bottled up inside of you will affect how you feel daily as this disease progresses. Thankfully for most of us, this thing is moving slowly and there is hope on the horizon for medications that will slow down the progression of the disease. I just want to encourage you in your ongoing battle with this disease.

I also would like to encourage you to check out an excellent PSC group on Yahoo. It will give you a treasure trove of information and there are excellent people in the group including scientists and doctors who are more than willing to share even something that may seem small to you but important to you as well. Don't feel like you are alone in this.

Here's the link for the group. http://groups.yahoo.com/neo/groups/psc-support/info

Mark Wilson


#3

Hi Lily
You sound so much like me! I kept my illness to myself until I knew the prognosis. I just could not tell people about this crazy illness with this name no one had heard of, until I knew what the future looked like for me.
What brought it to a head was a conference call that I tried to be on from the hospital… Code blue in the background with board members on the line was not a good idea- lol.

I am also independent and try to take care of those around me. Some friends could not deal with the role reversal of me not being the strong one as I got sicker and they disappeared while others who are now my best friends, stood up to support me. You will be surprised when you do let others know as to how this shakes down.
In the end though, you will need support from others on this one. It is not a journey best travelled alone! So get ready to practice receiving.
I am now 18 months post transplant and getting my life back on track.
Best to you on this crazy journey… You are not alone.


#4

Thank you guys for such thoughtful responses. This topic really is something that will be very challenging for me. Please be patient with me as it may take me some time to digest your replies and respond. I really am so grateful for all and any input.


#5

I think the horse is out of the barn Lily. From what I understand from your post, people know you've been ill and they've learned you've been having some tests. The thing you can control now is the amount of detail you give and the timing of your information.

Anyhow, what if you live another twenty years before getting a liver transplant? Won't you need support while living with PSC? And what if they come up with a cure? Wouldn't you want your brothers to know that you suffered with the insecurity of PSC but now you're doing well again?

My problem is a little different. I've told many people and they seem to not "take it in." They seem in denial, and it's as if they're tired of thinking about it now, fifteen years in. They don't alter their patterns because of my fatigue. They actually don't alter anything. They might only think about it occasionally. I don't think pity enters into the equation. I wish they did treat me a bit more specially, such as giving me more rides to family gatherings or spending money on cleaning ladies so that I don't have to struggle with household chores.


#6

Hi Lily,

well, it looks like my first reaction to your post is shared by many others: keeping it a secret nothing but hurts you in the long run, and talking helps you and your surrounding manifold!

you are severely sick, that's a fact, your fatigues will get noticed, so why not explain what troubles you?!?

Lara is so right! you can't hide it, but you can control,what others know. Most people don't want to know all (they aren't supposed to know anyhow). I found out, that telling that I have an incurable liver disease which slowly destroys the liver is normally more than enough. And much better than letting rumors grow about some other disease potentially dangerous for others! Gossiping always starts due to lack of information.

so go ahead, make your decision, and live with it the best way you can manage.

greetings from Rippi (Small Duct PSC, even more seldom than PSC)