View Full Version : I am so upset, I need to talk

12-21-2006, 01:45 PM
How many of you who are dealing with lupus and other similiar diseases have found out that your friends are not truly your friends? I figure that 1 out of 10 of my hasband's and mine have stuck around. This is just a total vent about how I am feeling about this. I sent an email to a friend of mine who is about to have surgery and told her I was thinking of her and wished her well. I told her how things were going for my husband, Larry and how we are trying to cope with his SLE lupus, sjogrens, hashimoto's thyroid and acute pancreatitis. Her reply stunned me to no end. She said she has sympathy, but not much. One either gets strong or stays weak. She has other things that she has to think about and won't get involved in any one else's issues. How do you all deal with people like this that you always thought were your friend? I was stunned when I read the email and decided I would never bother her again. Of course I am weak right now. My mom died in June, and we found out just in July that Larry has these terrible diseases. I don't even know what I expect any of you to say, I just needed to vent a little. This is not the only friend that has given us the cold shoulder. This one just stood out to me because in my eyes it was so rude, and totally not expected. Geeez, people just don't get how bad this stuff is. I wouldn't wish any of these diseases on my worst enemy. Even though I don't have any of them myself, I watch my hubby go through this and it is heartbreaking for me.

12-21-2006, 02:09 PM
but I doubt this woman was ever your true friend to start with - she sounds very selfish and self-absorbed. I hope she never finds herself in a position where she needs help!

One of the hardest things to accept with lupus or any other chronic illness is the reactions of other people, especially if you have an "invisible" illness that doesn't show on the outside. When you're in a wheelchair, or something obvious, people are often kinder than they are to someone with an illness they can't see and don't understand. Part of it is fear - when you have a serious illness, other people tend to blame you for it, because that way they don't have to worry that they might get some catastrophic illness too. It's sad and hurtful, but there isn't much you can do except cherish the true friends you have, and don't worry about the rest of them. All of us here have lost something from this illness - friends, relationships, jobs, our sense of independence, the feeling of being in control of our lives. Our dear Saysusie lost the most precious thing of all - her daughter. You still have your husband - love him, cherish him - it doesn't matter if some selfish people turn their backs on you - your true and faithful friends will still be there. God will still be there. And any time you need to cry, or worry, or pray, you have a "family" here who will NEVER turn their backs on you.

12-21-2006, 03:14 PM
I have been telling myself the same things you said to me. I got so upset a couple of weeks ago because another so called friend basically told me the same thing as this one did today, that I didn't sleep for 2 nights and cried all of the time. Then I realized that I don't need people like that in my life, I had to let it go, that I do have true friends and my sister has been so supportive it is unreal. I do thank God for all that Larry and I still have. I know it could be much worse than it is. I think I was just caught off guard with this latest email. And like you, even though she was rude, I would never want her or anyone to go through this mess. I am not a mean person, I think that is why as a newbie to dealing with these disaeases, I am shocked that others can indeed be so uncaring of others.

Larry has developed a large cyst on his pancreas and his pancreas duct is partially blocked. We went to the hospital early this morning and he had an MRCP and alot of bloodwork done. I don't know what is next, but we will have to deal with it and pray for the best.


12-21-2006, 03:27 PM
Just remember that with the techniques available now, many problems that used to require major surgery can now be fixed laprosopically. When my brother had his surgery he was back at home in less than a week, and eating pot roast and lemon pound cake (his favorite meal) the week after that.

This is a link to a christian website for people with chronic illnesses. They have a section on spousal support for husbands and wives, with articles and advice on how to deal with all the changes. You might find something there to help you too.


12-21-2006, 08:33 PM
I am not going to let myself get stressed out over the cyst thing. He has had alot of them before when he was having pancreatic attacks, but this is the first time he has gotten one on his pancreas without an attack. We will wait and see what the docs say and go from there. You are right, there are all kinds of new ways of dealing with those types of medical issues now. I will indeed check out the site you posted about. Thanks!


12-22-2006, 09:06 AM
I too have lost friends, and even some of my family. My sister always tells me that she knows people with lupus and they lead a normal life, work, play, etc. I told her how I feel but it just does not register with her or anyone else for that matter. My husband has tried to tell people what it is like, they do not believe him either.

12-22-2006, 10:06 AM
You hit it right on the nail head. I think it may be because people with these diseases may sometimes look like they are not sick, but they are in fact terribly sick. I am learning to stay away from the people who are not supportive. I don't even have any of these diseases, but my husband does and I want to support him in every way possible, and I have lost so-called friends. And that is okay. It is hurtful at first, but now I realize that these people were never truly my friends after-all. I try to look at it as their loss!