View Full Version : Does anyone else have family who is in denial over their Dx?
10-29-2006, 07:05 AM
My mother theoretically understandshow awful my situation is, but when I try to talk with her about my actual symptoms in the here and now, she either changes the subject; talks about how with the right care I should be in "remission" shortly -- e.g. if I'm not --it's my own fault because I'm not doing what I should to get better; or downplays the aspect (brain fog) that scares me the most -- even though she's seen me making out of character stupid mistakes. I'm not looking for a pity party -- but it would be nice not to be made to feel like I had this coming or am trying to use this to explain character/intellectual faults.
10-29-2006, 07:37 AM
Hi. I just read an interesting post this morning that may help you with your family. The post is by SoleSinger. It is from a web site that you and your family should check out. I found it to be quite interesting. Check it out. It is http://www.butyoudontlooksick.com/the_spoon_theory/. It may help you and your family. I hope that this helps in some way. Hugs, Kathleen
10-29-2006, 08:54 AM
Part of this may be a generational thing, if your parents are older, that may have been raised in a time when personal things like illness just weren't discussed even among families. It may also be that your mother herself was not raised in an emotionally supportive atmosphere, so she simply doesn't know how to deal with the situation. Try not to take her responses personally because I doubt she realizes the effect they are having on you. What she is saying and what you are hearing may be totally different.
The website Kathleen mentioned is cxcellent - you may also find more information at the Invisible Disabilities Advocate website - www.myida.org - which focuses on helping people with "invisible illnesses" communicate with their friends and family about the effects of their disease. Look at the section called Articles to help Loved Ones understand.
Ultimately this may be an area where you have to accept that your mom loves you in her own way, but will never be able to give you the support you want and need. This is no one's fault - just something that happens. So looking to other places for support may be your best answer.
You also have to understand that you cannot rely on other people to "validate" your illness, By this I mean that there will always be people - doctors, co-workers, family, even total strangers - who do not understand your illness and who will make callous or insensitive comments, or imply you are making up your symptoms or their severity - a common reaction is "I have a _____ (fill in the blank) wih lupus and she doesn't have all these problems" "She holds down a job" "She doesn't take all these meds" - making this mythical "she" sound like Zena and Wonder Woman rolled into one. It's useless to reason with this line of argument, all you can do is smile and say she isn't me. If you listen to this too often, you start believing it yourself, and from there it's a short step to "It must be my fault" or I'm doing something wrong to still have all these problems which is bull (pardon my language). Lupus by its very nature is unpredictable and no one can predict the course yours will take. So believe in yourself, believe you know your own body better than anyone else can, and don't listen to anyone who tells you how you "should" be feeling. Your inner strength is your greatest resource in this illness - learn to trust it.
10-29-2006, 02:16 PM
I have family and friends in denial, too...with my friends, it's sort of like, after I told them, they avoided me for almost a month, and then there was a point where things just went back to normal, and it seems like an unspoken rule now that we just don't talk about it.
My grandmother insists that I have just got a "temporary inflammation problem".
My mom is getting better, but she was in alot of ways the worst.
I think it's proportionate to how much she loves me and how important I am to her...she had this vision in her head of how things were going to be, and my being sick wasn't part of it.
We've talked a little about it, and she's told me she feels ripped off.
It's honest, but if I think about it too much, it could be hurtful...I just remind myself that it's hard for her because she loves me, and that makes it easier to deal with.
Sometimes when I say something about how I don't feel well, or if I mention a specific symptom, she'll look away or change the subject, too.
Or just get really quiet.
Sometimes I'll catch her looking at me funny, and when she sees that I see her, she'll look away quick.
I also think, part of what she's going through is guilt....for years I was saying I didn't feel well, and lots of times she would get short tempered with me about it...I think alot of those years she thought I was being a hypochondriac or a nut case or just plain lazy, and now that she knows I wasn't, it's hard for her to remember things she's said and done.
It's easier to pretend everything is the same as ever, because then you don't have to deal with those other icky feelings that go with the changes.
I think it's also frustrating to her that there isn't anything she can do, and not much I can do either to fix it...every now and then she gets on one and seems to think that if I just ate more, or ate differently, or exercised more or *insertlifestylechangehere* then I would feel better.
It's hard to fault her on that one, since I've been thinking the same thing for years, and nothing ever helped no matter what I did.
The thing that worries me the most is that my mom is very insistant that I am going to be fine. That I'm never going to get any worse than I am now, and that I'm going to live to be an old woman, and I'm going to be able to take care of her, and everything is going to be fine.
And I try telling her, well, I don't know that...and we should be realistic about this.
If I do get worse or have any serious problems, I'm not sure how well she'l l deal with it or be able to help me, which is a scary thing, because she's really the only family I have.
10-29-2006, 04:05 PM
Heck, I'm still in denial about my illness. It's still so new to me, I'm just not sure I want to believe it's really Lupus. I keep waiting for the doctor to say something like, "You know, I think we may have made a mistake here. It's not Lupus its XXXX (whatever.)" Could happen. My husband swings from being scared and attentive to being impatient and a bit angry. I think he wants me to take control of the disease..or he wants to take control. He's a bit 'old school' and wants to fix what's wrong. But this time he can't. I think it's important for me to remember that our relationship can't be all about my illness. It's so easy to do that, particularly right now because it's new, I'm in a major flare, and it's overwhelming. But I need my husband to be there for the long haul, so I try to give him some room. I know he'll do whatever I need him to do, and I'm grateful for that.
10-30-2006, 07:39 AM
I had read about the spoons anaology earlier -- it's a relatively good one.
I'm trying to understand and put others' reactions into context but it's still very difficult. Basically, despite their comments to the contrary -- people only want to hear the good news.
I'm thankful to have somewhere (e.g. here) to go where, when there is bad news, I get non-judgemental support, not "what did/didn't you do now" type comments.
Bless you all !
10-30-2006, 11:47 AM
Please don't feel that you are alone in this response from people. I know the feeling and it is incredibly frustrating. My mom and sister, who both live in different states, have decided that I am exaggerating and whenever I am on the phone with either of them, they tell me I am "over-dramatizing". My mom is bipolar and she thinks I am just depressed and that if I just started taking the same anti-depressant she takes, I would feel better and that the Lupus would diminish.
My husband happens to have a cousin with Lupus. I have never met her, but my mother-in-law is very close to her. My mother-in-law is constantly saying "but that doesn't happen to Mandy" and "Mandy doesn't have to take those meds". So, anything that I say can't possibly be true because it's not happening to Mandy. It doesn't matter that she is 10 years younger than me and apparently is blessed with a much milder form of Lupus. In fact, she spent a week in Florida sunbathing with my in-laws and had no problems. Lucky her!
My father in law is one of those that if you can't see it and touch it, it isn't real. He has called me a big baby and a lazy whiner to my face. He has told my husband that he believes I am making it up so that I don't have to carry my share of the marital, parenting or household responsibilities. Hmmm, the fact that I work 40 plus hours a week, have two kids and I am the full-time parent when my husband is overseas in the military for six months at a time seems to have escaped his notice. The house hasn't burned down yet...
My husband has been great, but he does get angry and frustrated sometimes when he can't fix it and he can't see what I am complaining about. I can understand his frustration. I get frustrated too!
So, there you have it. A lot of people flat out don't understand and they are not going to. I won't even get into the issues I have with my co-workers. Some people refuse to understand because if they do, that means they have to deal with something unknown and scary and they might have to go out of their way sometimes, because not to would make them jerks. I don't mean to be jaded or callous but it's true.
Hang in there!
10-30-2006, 02:56 PM
People either "get it" right away, are "slow" in getting it, or will NEVER get it.
Some of my family just didn't want to know until this last bad flare. I sent them all the spoons theory, along with what was currently happening. It has made many of them come around. (believe it or not, many of them took me losing my HAIR the worst---as it that was the worst pain I have had!)
but then, I don't like to complain and complain and complain. so I sheilded them in a way that wasn't fair to them or me.
I'll post about how my husband handles this somewhere esle. I am baffled about it.
By the way, a lot of how people have learned to deal with me in the throes of a flare has been a reflection of THEIR maturity. some people just cannot handle someone they care about being sick. The real keepers are the ones who see ME, not my illness, and are willing to wash a dish, bring me a sandwich, sit with me and watch a movie and share a cup of tea. May god forever bless them!!
10-30-2006, 05:42 PM
My mom does that same thing, comparing me to a guy who comes in to her place of work who also has lupus.
She'll say, well HE is handling it just fine, HE goes out and rides on his motorcycle, and HE lives alone and takes care of everything just fine, and I keep trying to tell her, he's not me, it's different for everyone, but she just sees this guy who seems perfectly fine and doesn't get why I don't seem perfectly fine, too.
It's really frustrating...and yes, I did tell her the Spoon Theory, and it didn't help at all.
11-01-2006, 02:26 PM
I have to say my husnad and kids have been incredibly supportive. My husband "fights" the relatives who say "oh she'll be fine" and sticks up for me when I don't feel well. He makes me nap and doesn't complain when I go to bed early without him yet again. My kids are adults and make me proud of the way they accept this and always ask how I feel and how they help out. I am one lucky woman ...lupus or no lupus!
11-06-2006, 04:19 PM
It is hard to try to explain to others what you are going through. It is really tough when you turn to family and they try their best to justify it all away for you. My mother is trying really hard to understand but she doesn't. I read on the posts yesterday about the spoon theory and sent that to my mom yesterday. That is the best way that I have found out yet to describe daily living to her and why I am not able to do everything that I used to do.
She sent me the reply today "...thank you for sharing this with me. I know deep down I wish someone would say you have been misdiagnosed. It breaks my heart I cannot fix it. I love you so much. You are a very important part of who I am. 'our Mom, Me"
We are making progress and it is slow. I still need someone to talk to that knows what I am going through and I have found a great strength is sites like this one.
I had a patient come into my office today that asked me why I was going bald. I have never been so bluntly confronted with that. I always try to joke it away with my co-workers because I know that it is very noticable and I bothers me more then I let on. Her words, meant with inocense, really hurt. There will always be ones that will say things that hurt because they just don't know any better.
I wish you the best of luck with your friends and families and if you ever need to just chat then I am there for you.
11-07-2006, 09:57 AM
It's amazing how sensitive some people can be and how horrible others can be. All my husband's employees are wonderful, if a bit "freaked out" by the dramatic turns this illnes can and has taken...they even come to see me in the hospital! but there's this one jerk....and he is a jerk all around....his response to me was, "Yeah, I have a sister who died last year of Lupus. they tried everything and there was nothing they could do. My mom has it bad now, and it's just a matter of time." I wanted to slap him.
11-09-2006, 03:39 PM
Oh you all will love this one: My sister and my mom just vacationed together for a week. Their last night together, my sister called me. Apparently they had spent some time thinking and discussing my "situation". They have decided that I haven't gotten enough second and third and fourth opinions regarding my condition (apparently 2 GPs, 2 neurologists, 2 rhuematologists and a cardiologist weren't enough for them). They think that all the medication is going to seriously hurt me, if not kill me. They are especially concerned about the methotrexate. They think it is silly to take "chemotherapy" drugs for a non-cancer condition. Then they actually accused me of having cancer and not telling them. Then they switched gears and said that I should be seeing a psychiatrist and attending group therapy and that I am just sad and depressed. And then, here is the big kicker, If I would lose weight, my joints wouldn't hurt, my chest pain would go away and I wouldn't need the drugs anyway. They want me to have gastric bypass surgery or lap band surgery. Or at the very least go on Nutrisystem or Jenny Craig.
Now, I am not saying I don't need to lose weight, I am about 120 pounds too heavy. But, both my family doctor and my rhuemy and my cardiologist say that is the least of my problems at the moment. And they don't want me crash dieting and I don't qualify for surgery with a compromised immune system. My mom even knows someone who died from complications from a gastric bypass surgery, but she said "oh that won't happen to you" and "this could save your life".
The last thing my sister said to me was, that I should just stop taking all the drugs, and just deal with the pain and lose weight. Then she said that I can't have Lupus anyway, because from what she's read, it's hereditary and genetic, and since Mom doesn't have it, it isn't very likely that I have it AND she doesn't want to get it (she's three years younger) and she doesn't want to spend her life worrying every time she has a pain or a cold that she is getting some lifelong disease.
So what do you think? Denial is not just a river in Egypt....
11-13-2006, 07:01 PM
This isn't quite denial, but I think it's related.
Any time I am feeling crappy (fever, chills, body aches, fatigue, and rheumatoid arthritis) and complain to my husband, who has arthritis, he says something like, "Yeah, last week my knees hurt too," or "Last winter, I had to take Naproxen every day." It makes me feel totally juvenile for feeling this way, but it feels like he is trying to one-up my symptoms, or somehow say that what I'm feeling is no worse than what he's had in the past.
Of course, I don't know what he went through in the past, but it just makes me feel like he is invalidating what I'm going through now. Or like he's saying I'm a big baby for not being able to handle it like he did (last week, last year, or whenever).
I'm really not very sick and know I should be counting my blessings (and do, most of the time), but every once in a while I want to whine about feeling like crap and my husband seems like the appropriate sounding board -- it's not like I'm carrying on to every random person who passes by.
Anyway, thanks for listening. One of these days I'll have to get over it and tell him how he's making me feel... but for now, whining to y'all is making me feel better. :) Thanks for letting me unload.