Parent in denial

My mother wont admit that i have lupus. she believes that it is an intolerance to gluten and nothing else. It hurts me to not be able to talk to her about certain things i am going through. I feel like i have to lie to her when i am having a bad day or why i have hives or rashes. It hurts my heart to have a mother in denial. Has anyone else been through this with someone close to them? And how did you deal with the situation?


I'm sorry your mother won't accept this. It's difficult for a mother not to be able to help a child, we're supposed to take care of them and kiss their boo boos. Has she gone to your doctor's appointments with you? Perhaps this will help her.... I think of how I felt when I was first diagnosed, and it took some time to accept it, and decide I was going to do what I have to take care of myself. This is the place for you to vent, and we understand how you feel. Your mother loves you, and give her time.

My family, dad and sister, do not believe me either. My sister thinks that anyone with lupus is just said that if there is nothing a doctor can find wrong. She apparently told my dad this too. He told me that I just want to be sick. Then there are those that don't deny I have lupus, but think that I should be like the actors and athletes who have lupus that seem to be leading normal, healthy, active lives. I don't let anyone know exactly how bad I feel. The looks I would get would just make me feel worse.

Fortunately, my husband, daughter, and mother-in-luv understand and believe. But, I don't even let them know how I really feel. I don't want to be a burden.

I have a friend whose husband sware she is making up everything about lupus. I'm sorry that your mom don't believe you. Sometimes people look at me and say things like you don't look like you have lupus. My first initial thought was well what does that person look like. Then I thought about having them attend a couple of doctor appointments with me. While their there they can pick up the co-payment as well lol. Just trying to make you smile. Seriously maybe take small steps by providing your mom with some litearture on lupus. Hopefully she will come around.

thanks for sharing.

My mom and I don’t speak because she does not believe me either. I would call her in tears every time a doctor would find something that didn’t make quite sense she would say “bummer” and then talk about herself or tell me that maybe it was just mental. That I was just exaggerating and I was fine. Never has she called me to see how I am doing, she may say “hope you are ok” but never actually asks to know. She always says her friend’s kid has it and she does just fine so why am I not fine. It is probably just because I am fat, she says. I was in the hospital last year I emailed my mom and sister and they were sending me the meanest emails. My doctor suggested I bring her in to talk to her she said it happens with lupus. That families just don’t understand. I didn’t want the argument anymore especially not in front of my sweet doctor. I have been so much more peaceful without the stress of forcefully trying to make my mom understand. I just go elsewhere for support. It sucks, but I have to and it is so much better now that I did. You have to think about you and go to the ones that support you. This is when you find out who does and I am shocked to find out who does. I sometimes want to show her the brain spect that shows the brain damage caused by lupus to prove to her how bad lupus is but it I am not going to do that anymore… I am happier this way :slight_smile:

This reminds me of the 80's, when Chronic Fatigue Syndrome started to be diagnosed. Most of the time people just thought the person was faking and using it as an excuse. Boy, have we come a long way. And then there are people who still believe anything autoimmune is in our heads. I don't know what to say to all of you except I have a lot of experience with people being incredibly unsupportive. Thank goodness we have each other.

Thank you so much everyone for the help and stories. They have all helped. It’s wonderful to know I am not alone

You have to take care of yourself. Stop lying to your mother too. If your constantly trying to hide how you are feeling, how is she going to eventually “get it”? I was constantly hiding things from my family then getting upset when they couldn’t see how bad I felt. If she still doesn’t see it, limit your exposure to her. If she asks why you don’t call anymore, tell her. Honesty IS the best policy here and YOU are the only person responsible for your health. Good luck and stay strong. I had to do this with my own mother. Her problems were always worse. So frustrating.

Maybe she cannot accept it since she thinks she passed on bad genes of lupus? So she feels guilty for passing it on so to say? Just a guess. I know my mom has felt guilty about this theory especially since my half brother was severely ill with autoimmune disease too and she is our parent in common.

Odds are it is her stuff not yours so try to just think of it as her problem. I know we all would like support especially from our moms but world is far from perfect. I think in time as she learns to deal with her feelings of guilt she will support you as well.

If really hurts you and you just cannot get over the pain i put myself in counseling to learn how to accept that this is her problem not yours. You have enough with dealing with the disease! i am sorry though all the same

As Trisha said,

It is difficult for a parent not to be able to help their child. This sounds like it goes farther than that, tho. My youngest son and I don't speak (he's 18) because my ex-husband has spent the last few years basically telling him that "I just want everyone to feel sorry for me" I wasn't diagnosed until last November. I don't tell people unless it affects plans or it's not something I can hide and even then I simply say " I am not up to doing, going, etc." and they can be angry or not. That is not my problem but theirs.

I went to see my parents and brothers over the 4th and on Saturday I simply slept the day away after 2 days of little to moderate activity (one day just sleeping in the car). Not the first time, but because I see my family so little they aren't aware of what my day-to-day life is like and assumed my days are always like that. This was about the only "visible" evidence of my lupus except for the puffy face from the Prednisone.

Prior to going, my step-mother continually asked if I was up for it or what could I do, etc. because I had been VERY ill. I told her I couldn't predict what or when I could do certain things. Heavy physical activity was out and if we were going to go to the bay Saturday (the original plan) I would to have a large umbrella or even possibly a canopy. I have only been on Lupus meds since Jan, but the change is remarkable. I try to do as much as possible when I can, but as we all know sometimes there is just no going. By Sunday before we left, I was hearing things from her like "I've read that a person with lupus should walk a mile a day", yeah, right! Because my husband sees every day what I go through, he let her know in no uncertain terms that it's just simply not possible and that every person with lupus has different levels of what they are able to do or not to do.

She doesn't see the days when I am lying on the bathroom floor throwing up, speaking to people who aren't there, forgetting how to get home, etc. I am thankful that they didn't have to see it, because I am very quick to shut down anyone feeling sorry for me. I simply tell my family that although I would love to do the things I used to do, I now do what I can on a day to day basis.

As to the gluten theory. although I have stopped eating nearly all gluten, the best benefit that I have found from doing this is that I don't have nearly as much stomach upset, however I haven't noticed a significant difference in my lupus symptoms. Again, if I accidently eat or can't avoid gluten, I don't get a flare... just a tummy-ache.

Unfortunately, you cannot make someone believe you, however I agree that you should be honest about how you are feeling that particular day. If she asks you to do something or go somewhere and you can't, just simply say NO.

Siskiyousis is absolutely correct. This is her problem, not yours. It is very difficult, I know...but living with the constant stress of the situation it not good for your health.

We KNOW that you are ill and you will never have to downplay or lie to anyone in this family.

Biggest of hugs,