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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Describe the best kind of support person for you

Can you paint a word picture of how you would like your spouse, partner, significant other, caregiver (or whoever is watching your back)to respond to your illness. Some things you might consider are;

  • Would you want your illness to be kept private?
    -Would you want this person to collaborate with you and your physicians if you just didn’t have the time or energy to do it yourself?
    -How do you want them to deal with their own anxiety over your illness. Should they talk to you about it or seek counsel elsewhere?
    -Would you want them to do research on remedies that you might need to help you cope with some of the nasty symptoms of PSC?

Add anything else the is important to you. Thanks.

My wife is my caretaker and she has helped pull me through a 60lb weight loss, 106 days in the hospital (mostly from post-transplant complications), and putting up with my sudden retirement. She is very obsessive compulsive which helps because she counts out the 40+ pills I take every day and she also reminds me of doctor's appointments, and plans life around my 3X/wk renal dialysis schedule. She also helps keep me grounded and positive!

She has seen a psychologist, during my illness who has helped her straighten out her problems.

Regarding telling people about your illness, I feel it is a good idea (provided you have health insurance). If you lose 1/3 of your body weight like most people do pre-transplant, people will know something serious is going on and troublesome gossip may start.

Stay strong!

EAD3

My husband is my everyday caretaker. And my mom-in-law is also a tremendous help. She is an EMT and has a tremendous amount of experience with hospitals and illnesses of her own, so se really helps keep me hopeful and helps me think on things I might need to ask my doctor about.

I know a lot of people don’t mind sharing when they’re ill and such. I kinda can’t help it, because when I’m sick it is very obvious. I would keep it private, but as my family is kind of high-profile in our community, everybody wants to know how we are doing.

It is really easy for me to get overwhelmed with how my illness affects my family, so when they get stressed about it, knowing that they’re stressed about it just makes me feel guilty and horrible for dragging them through it all with me. Mostly because they are so wonderful and supportive, and they do so much for me.

I am always open to coping methods. I don’t mind them researching things, as long as they don’t get caught up in pseudo-cures.

I wish my husband did not want to hide his disease from the world. It is making it very hard for me to cope. I can’t talk freely to friends, our children, my parents or sisters, his mom or sister. It makes it so difficult to plan anything at all… Medical, financial, retirements, purchases, maintaining our home , something fun… Anything. I grow more weary of trying to communicate. What to do? Weeping does not work and I can’t stand myself when I am… but I am…

Dolphin5,

I'll tell you a little bit about my own experience. For my wife and I, speaking openly of this disease as well as her breast cancer back in 2008 has meant so much. If I were to bottle up all that we have faced together over these 27 years of marriage with these health conditions coming in recent years I think I would go crazy. Our families, our friends, our church and even people I know in the business community where we live, we have freely shared all that we've gone through. During my wife's cancer I had a large email list of people that I sent regular updates to them of how she was doing. Yes, not everyone felt comfortable asking us directly how she was doing or how I am doing, but they appreciated so much the emails and I know they were praying for her and now for me. Please encourage your husband to open up. If he continues in this line of thought it could be detrimental to his thinking which will affect his health as well. It's not pills and shrinks we need but it's hope, faith and a determination to live this life to it's fullest through all that we will suffer. Please be assured of my continued prayers for the both of you.

Mark