View Full Version : Dealing with family members in denial!!!

01-08-2011, 12:55 PM
I think over the last 7 years we have gone through many diagnosis' to finally arrive at SLE. My mother has been able to accept everything but the lupus. Even though it is now medically undeniable, she still finds a way. She simply refuses to face our current cituation. I just had my latest bloodwork done and it is so enemic it is almost at transfusion level. She has an excuse for that too. LOL. HELP!!!!


01-08-2011, 10:24 PM
I think that many of our family members just can't believe that we are really sick, or they don't want to.
My kids are all adults, but when I'm with them, they expect me to be the same old Mom that I used to be.
See if you can get her to read some printed info, or even read a bit here at WHL.
There is also a great thing called The Spoon Theory that you can show her. Mari has the link, or you can google it.

01-08-2011, 11:12 PM
It is funny but my family is a lot like that but my friends can see the change. My siblings and I have never been close and my daughter is a teenager (wonderful child but at that age they are very self involved). When I do hear from one of my brothers (which is about 3 times a year) he always wants to tell me how I need to get off of the meds. It is the medicines making me feel bad. It makes me want to punch him and I am not a violent person! LOL

I did have success showing a few people close to me the Spoon Theory. It is a really good way to make them understand what our day is like but they have to be open to hearing in. Hope it works for you!


01-08-2011, 11:22 PM
I loved the spoon theory it was posted last week and I emailed it to everyone. The problem is I can't make them read it.

01-08-2011, 11:47 PM
My toxic SIL, who is married to my only sibling, actually had the nerve to say I was making myself sick. Needless to say, I no longer have a relationship with her or my brother. Sadly, my brother has allowed this "woman" (she's no lady) to also alienate him from our mother. Anyway, I digress.

You can't make loved ones understand if they're unwilling to read or educate themselves about SLE or anything associated with the disease. Sadly, that's why people with chronic illness often feel so depressed--because they don't feel like their family understands their illness and that their family/friends have abandoned them when they've already lost so much.

After all, we don't look sick (usually), may have lost weight (sometimes) and can still string ten words together to create a sentence (if cog fog hasn't totally taken over).

I've given up trying to educate people because I find it more depressing when I realize they just don't care. Not to be a downer, just my experience of late...

01-09-2011, 05:27 AM
You are so right. I can't make anyone believe anything. Its kind of like faith. There are so many people that I wish could experience the kind of faith that I have. But they can't or won't. I can tell them and show them even present them with scientific evidence but there minds and hearts are closed. I think my mom will eventually come around. It is on me to also consider her feelings and not just my own. Oh, but that doesn't apply to your toxic SIL. LOL

01-09-2011, 07:45 AM
I think most of us can agree that sometimes our family members do not see the physical and emotional changes in us because they are in denial that anything could possibly take us away from them. It gets very frustrating when you do not feel well but do things because you feel obligated to do it. I am a great one to put everybody before myself. Bonita

01-10-2011, 07:38 PM
I understand exzctly how you feel. My grown kids are always telling me that "I am getting old" because they think I never want to go shopping or to the playground or just run around with them like I used to. I have tried to explain to them how bad I feel and I just can't help it, but it is like if they don't discuss they can pretend it really isn't happening. It is so frustrating because I just want them to understand and be there for me when I feel so bad.

01-12-2011, 09:27 PM
LanaS, good luck with your Mother. It's interesting that she has accepted other things through the years but not SLE. Do you mean other diagnoses before the lupus? I wonder why that is, what is different for her about you having SLE than the other things she's accepted.
BonusMom, your SIL is totally out of place to tell you that you are making yourself sick.
I still don't totally understand the attitude of the few close family members that I've talked to about my SLE. They seem to forget. Those same people ask how I am and I'll say I'm achy and have bad headache today and stayed in bed all day and they'll ask why. I think because I don't look outwardly sick, and I really push through the pain and fatigue when I'm around people and I don't constantly complain that they don't think I feel as bad as I actually do.
Take Care!

01-15-2011, 11:00 AM
I think some people that are in your life will only accept your lupus if it benefits them in some way. When they want you to be around for something and you aren't... then you see true colors come out. Sometimes I feel like pushing myself to do things, pretending I'm not in pain, and not complaining only come back to bite me in the end because family and friends don't always understand that Lupus is not going away, it hurts and sucks every minute of every single day. People in my life are getting better about it because I'm more open... but then I say that and someone will be insensitive or think they know better than I do about medicines or exercise or something they hear on the news..

01-15-2011, 07:16 PM
There is no way, I would say my husband was in deniel, but I would say, he did not understand the severity of lupus and what comes with it.
Ever since my dx, he has been loving, helpful and understanding.
But two weeks ago, when I came home from my rheumy appt. and I told him that the doc put me on MTX, ( he didn't know what MTX is, until I told him it was chemo), He was visibly shocked, I could read the concern in his eyes.
He actually said' i had no idea, that it is THAT bad".
Believe me, my husband is not ignorant, but he didn't comprehand(sp?). But I also didn't tell him all that lupus can do, like kidney failure etc. Because I did not want to worry him to much.
Maybe that is the case with your mother, she doesn't understand?
I hope you will find more understanding from your family.


01-16-2011, 12:07 AM
Nobody in my family is in denial except for my ex back before I dumped him for that reason and many others. My mother however is very jealous of my illnesses and keeps trying to tell me that I have Fibromyalgia like her and nothing else is wrong with me. She says the internet says my doctor's are wrong, and that just makes me crack up. Come on...They aren't wrong, and the internet is not smarter than they are. My mom has a lot of mental problems though, she is clinically crazy and will never be able to come back to normal. Everybody else in my family, as well as my friends understand what I am going through and accept it.
It's very hard for our loved ones to come to terms with what is going on with us sometimes more than us having to deal with it ourselves, and I hope one day you will get the understanding you need and deserve from your family.

01-17-2011, 10:18 PM
Well it looks like Mom and I have kind of had a little break through. She is still trying to fix me and doesn't realize just how much pain or damage lupus can cause. However, this weekend she was very nurturing toward me. and very pleasant to be around. It was a little surprising seeing as this is not our usual banter. Thank you for all comments and support.


01-18-2011, 07:03 AM
Oh Lana I am so glad! Baby steps! Baby steps take us where we need to go it just takes a little longer!

01-18-2011, 10:22 AM
hi lana,

your mom may have just needed a little time to talk with her friends and/or drs. My parents reacted the same way until they had their friends to tell them how serious lupus is.

I have learned not to expect others to understand this disease, because the only way to fully understand it, is to have it....and i would not wish this on anyone that i love. You have to do what is right for you, and if others don't understand, then that is their problem.....you have plenty to worry about without worrying if others' understand.

this is why this forum is so wonderful. we can come here and share with people who "do understand what we are dealing with."

01-18-2011, 05:41 PM
Happy to hear you've had a break through, no matter how big or small. Sometimes, like hunniebun, my mom tries to call it something else (since I haven't had a "proper diagonosis" since I was first "diagnosed" years ago) and other days she admits it. Some days might turn out like that, but over all, I'm sure she will come around. It might take a little time, but until then and even long after, we are all here for each other. We're a family too!

01-18-2011, 06:22 PM
I think it is funny that you say "a proper diagnosis since I was first "diagnosed" years ago" LOL. The first day I walked into the rheumy he said "Classic Lupus". He backed off that 1 month later when the next set of test results came back. I think we should hang 'em all by their toenails!

01-18-2011, 06:51 PM
I guess I'm lucky in one way, the prednisone has totally changed my face so they certainly know something is going on. No one believed me about the fibro though, to be honest, it hurts more but it's invisible. Now that my ANA is down, my parents have decided I don't have Lupus. I don't fight it anymore. If they ask how I'm doing (and they genuninely care, I know), I tell them the truth and they can take it or leave it. I have one friend I can talk to about it in detail (like watching myself bald where my bangs used to be) but I don't say that much to any other friend. There's something about these diseases that seem to spin people into denial. For those I love, I think they fear they'll lose me (I've had some serious medical issues since this all started) and for other people, illness just isn't interesting and it doesn't usually pertain to their life so why discuss it?

We're blessed because we have each other. In such a short time I feel so connected to many of our members. There are some beautiful words expressed and support given and ideas shared. I guess I've just decided that sometimes family is just an opportunity to celebrate a holiday but friends reach out and try to understand.

It will get easier, somehow and someway. Just think of two doors - one is locked and one is open. Don't beat your head on the locked door, just walk in the open door and start to mingle! : )

01-19-2011, 08:00 AM
I was reminded of this thread on Monday. I was having a conversation with my younger sister about a someone we had met this weekend who trained himself in nutritional information and used it to help himself loose about 150lbs. He has helped others and we both thought he was great. I mentioned to him that I really wanted to start working with a nutritionist or dietician to see what foods exactly were flaring which diseases for me and to start a meal plan specific to me but he said he wasn't trained to know about the diseases and doesn't feel that he should work with people with specific needs like me b/c he didn't want to worsen their condition. I completely agreed and respected that. Well my sister and I were comparing notes on what he had told us and when I repeated what he said she immediately pops off with it's all in your head you just need to start thinking positively. Never have I ever wanted to reach out and smack my sister like that before. I know she has no real idea of what it is like for me since I don't complain about it often and she is used to seeing me just do whatever I had previously set my mind to but still it was a little stinging that comment. I just told her that until she read up and educated herself on what it is that I have she shouldn't assume how I feel and that considering I am a positive person who sees the glass as half full already, she should realize that the power of positive thinking won't 100% change my situation. The funniest part was that I had told her about the power of positive thinking only a little bit earlier than that and suddenly she was an expert on it. lol. I feel better now that I shared this with you and I know you can all relate.