How supportive are your loved ones?

Pancreatitis
#1

Hi everyone,

Just wanting to know if anyone else is having issues with struggling with support from spouses or significant others or family & friends.

I’m hearing “You’re always sick”, "We never do anything anymore. I am trying now to not complain out loud, and just deal with it and be as normal as I can. But the truth is, I am just exhausted from it. I didn’t ask for this disease, or to have my bile duct screwed up.

Sorry for ranting, but this is the only place I feel I can. Where others understand the pain and nausea.

Liz

#2

Hey liz,

Don’t feel alone, i think all of us that have had this for a period of time have gone through that, its just what it is, and our husbands and wives married us in sickness and in health, it is hard almost impossible for the people who do not have this disease to understand the magnitude of pain nausea and diahrea that we live with day in and day out, pain in itself is exhausting so just pray for these people that they may be more understanding and tolerant of us.

i just do what i can and go when i can and that is all one can ask of us, we cannot sit on the sidelines but we can’t be on the go 24/7 either.hang in there we all understand, i feel safe saying that, hugs to you dear and do not take it personal, like you said nobody asked for this misery! have a sweet evening and sleep pain free my dear!
Julie

#3

Liz.

Yes, we do have that problem. However, are you having it directly with your spouse/significant other and children (you know, those who LIVE with you)? Those who do not live with me do not understand and avoidance is their primary tactic. “If I do not see it, then it does not exist.” “I can’t really spend time witth (your name here) because you are so tired and sick all of the time” with the further subtext of “and I don’t want to wear you out or down or put you out” or whatever the hell is in their mind! I just told a friend to stop making visits so short and that “I” will tell him when I am too sick or tired for him to be there. This is the best way to handle these people. It is actually a health/mentally positive thing to have guests visit and take time with us.

With love and care,

Anyse

#4

Thanks you two for the support. I know it is impossible for others to fully understand. My husband is mostly understanding, but he does get tired of it at times and will vent without thinking. I mean, how fun is it to go out and eat or to a party when your feeling nauseated and unsure what you can eat and how private is the bathroom.
For the most part I do ok with doing what I can, but lately it feels everyone is pushing for more & more . The understanding is lacking. Just because I am not in the hospital does not mean I am not having pain or issues.
Thanks for understanding

#5

Liz,

I am coming from the other side of the coin so to speak since I’m on here to learn more about chronic pancreatitis so I can do my best to support my girlfriend. I will let her say how well I am doing but I have always approached things with the motto that knowledge is understanding. I know that as a partner, I am in for the good and bad parts. I tell her I like her warts and all. So my question is how well does your husband understand the things that you are going through? Does your husband see what is going on here and what everyone else is going through? Sometimes we as the “well” partner do need to better understand what is going so we can be more supportive.

Hugs,

Dave :slight_smile:

#6

oh dear i so know what you are saying, i am the same as you, i stay way out
of the hospital unless i am on the verge of death, i just do the best i can
at home and most of the time it is with much pain, but let no one ask more
out of you then you can give, we know what we can take and that is just the
bottom line and do not feel bad saying hey i have pain and am not able, stay
strong and keep your head up high!

julie

#7

Liz,

On page 7 of the forum conversation there is a topic titled Mayo Clinic. This is an article that I read in their newsletter and put on so that others could copy it off and give to friends, relatives, etc. I sent a copy to my family and it helped a lot for them to read it. It also helped that it came from the Mayo Clinic. It carried a lot of weight. You can go there, copy it and hand it out.
I hope this helps you.

I will pray for you also.

Vonnie

#8

Hi all,
thanks for your support and relies,
Dave, for the most part my husband has been understanding. He has been there 24/7 for my 3.5week hospital stay. He has seen me through my worst times. I think he gets frustrated bacause I am not as healthy as I was when we first met, and we are limited more now on what we can do. I understand that and all. I think it is easy for people to forget I’m not ok if I look ok on the outside.
Anyse, your words of strength are always helpful!
Jewels, thank you for your support and kind words.
Vonnie, thank you for the info, I will print that.
Here’s to a new day today. Going to work and “telling them” I can only do half today…
Thank you all again,
Love Liz