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DeniseB1069
12-05-2010, 04:43 PM
Today my boyfriend stated that I am teaching my daughter to be a hypochondriac. She had a pimple or something on her back and asked if i thought it was something serious. I told her no. He says I go to the Dr for everything. The facts are, I have no insurance and havent for a year now. I dont go to the Dr unless i am in serious need. I am very hurt and am really re evaluating the relationship. Am I over reacting to his offhand remark? Maybe its just that he has these remarks so often. I have zero self esteem so these comments really work overtime on me.

Islablue
12-05-2010, 07:33 PM
That pisses me off and he's not even my boyfriend! I hope that he knows the severity of Lupus. It's not that you're a hypochondriac, it's that with Lupus you have to be on your toes when you start to feel sick. As soon as we do, we have to figure out what's wrong so it doesn't get real bad real fast. He needs to be sensitive to you about it. Listen to your feelings. Chances are ifyou are feeling misunderstood, then you probably are correct in thinking so. What you do about it is your decision. (((hugs))) Don't let him make you feel crazy! That's what doctors are for!

tgal
12-05-2010, 08:44 PM
Hi Denise! Welcome to WHL! I understand that it is difficult for healthy people to understand how we feel since we don't always look ill but comments like that are very irritating! Lupus and Fibro together is not a good combo and it makes for a very rough time. As was mentioned above we do have to watch out for things that others do not and there are times we may look fine and feel like crap! I suggest that you ask him to read up on these two diseases and get a better understanding of them because it seems like he is very uninformed. There is a story called "The Spoon Theory" at a http://www.butyoudontlooksick.com that may help him understand how you actually feel. If he continues to be so nonsupport your comment about reevaluating things may be a good idea

I am glad you found us and I look forward to getting to know you

SandyR
12-06-2010, 08:24 AM
i have the same problem with my sister. she's a trained nurse. It's very easy for a "healthy" person to dismiss us so easily. I guess part of it is we feel most comfortable talking about how we really feel with those closest to us (your bf, my sister) and they hear us talking about how we feel but maybe don't really see us looking so sick and just assume we are making it up. I hate that AI diseases have so many invisible symptoms. The worst are the doctors who are only willing to look for the concrete symptoms like serand4's rheumy who is so willing to undiagnose her at the moment. Your bf is not being as kind or compassionate as he could be right now. He really needs to do a little reading up on your diseases or maybe join you at a support group so he can understand how sick you really are. The Spoon Theory is a great place to start with him. You might also want to suggest that he check out WHL. There is a thread here for family and friends of spoonies on here. Anything to open his mind and expand his knowledge of your situation and how he can help or hurt it. If he's not willing to do those things then I would be having second thoughts about the relationship too if I were in your shoes.

DeniseB1069
12-06-2010, 01:39 PM
Thank you for your support and ideas. I sent him the spoon theory months ago and i agree, it really does explain it so well. I told him how much he upset me and he says he did not call me that, he says I think everyone should go to the Dr all of the time. I do have to admit when I am down sick and you can "see it" pain across my face, bawling in bed etc... he is very attentive. Its the offhand comments that make me go hmmmm...... He is a really good man and I think with the right person he would be amazing. I just dont think its me. In the time we have been together I went from a confident understanding intelligent artsy women to a jealous, edgy bitter no self esteem biotch! I love him but to quote samantha in sex in the city, "I love me more"

rob
12-06-2010, 02:01 PM
Hi Denise,

I really went off on the last person who called me a hypochondriac. It was someone who had been told many times that I have Lupus. I told this person that the facts about Lupus are readily available and easily accessible via the internet and from sites like WHL. Or, this moron could have simply asked me about Lupus and would have gladly talked to him about it. But no, that would have been too easy, too polite.

So, with that in mind, I asked this person if they were simply dumb as a box of rocks and illiterate, or if they were just wallowing in willful ignorance. This guy actually got pissed off at ME for insulting HIM. Well, if he had not called me a hypochondriac, I certainly would not have slung any insults in his direction. His last words to me were the typical "Well you don't look sick" to which I replied "Yeah, and YOU look like a reasonably intelligent and educated person, but looks can be deceiving, can't they".

I don't think you are overreacting at all Denise. In our world, hypochondriac is one of the most insulting things you could call a person. I hope your boyfriend decides to learn about Lupus so he can better understand you and what you have to deal with everyday.

Rob

SandyR
12-06-2010, 03:01 PM
He is a really good man and I think with the right person he would be amazing. I just dont think its me. In the time we have been together I went from a confident understanding intelligent artsy women to a jealous, edgy bitter no self esteem biotch! I love him but to quote samantha in sex in the city, "I love me more"

it sounds to me like you already know what you want to do. :wink: I do so love Samantha's wisdom in that remark. I am sure with the right man, you will be back to your good ole self.

Linda From Australia
12-06-2010, 03:59 PM
Rob you seem to be very quick with your come backs. I only think of good things to say back to people afterwards when they are long gone. Perhaps we should all have a liitle black book with effective comebacks to use at the appropriate times. When we are insulted, we can pause and say "just a minute' then flick through the little book then say 'there I got you with this cool one liner'.

Actually, that would be really luppie, and will add to their confirmation that people with Lupus are just a bit strange. mmmm. I have to come up with something better.

Denise, we often hurt the people we love the most. Your boyfriend, as you have said, has been very attentive at times, but then other times has hurt your feelings. I suppose it is hard for someone to live with a chronically ill person and feelings are going to get hurt sometimes. Relationships are very precious and they need to be nurtured, good communication is the key to any good relationship. Only you can decide whether you can feel comfortable with your boyfriend. Hopefully you can have a better week this week.

mountaindreamer
12-06-2010, 05:29 PM
hi deinse,

first, welcome to whl. this is an incredible support site, and the members are always here to share their experiences and knowledge with each other. so, welcome.

There are several of us here at whl who know exactly what you are feeling. A chronic debilitating illness can absolutely snatch our "lifestyles" right out from under us. We are put into a position where we must make changes in every part of our lives. And in this process, we have also had to make very difficult and painful decisions to let some people go, because they just don't seem to get it, and they continue to take verbal jabs at us. And there are some people who become great support members after they go through the initial shock of your diagnosis. Your boyfriend is also having to learn how to live with your lupus and he may be letting off anger at your illness when he says things. However, it is imperative that he keep his "serpeant tongue" in his mouth, and be nice to you. Friends don't intentionally hurt friends.

You must put yourself as a priority, and make choices that are best for you. That is one of the requirements of learning how to live with lupus. Always remember the spoon theory...every decision/choice that you make is precious, so do what is right for you. It might seem selfish, because that is what it is. You are learning to prioritize your "to do" list, and you need to always be close to the top of that list.

When the time is right, you will know what decision to make. You can trust yourself.

tgal
12-06-2010, 06:52 PM
Excellent post Phyllis. Perfectly said

teresaa40
12-07-2010, 01:46 AM
OK, Im just gonna jump in here with my take on it. I also have a DH who has run the gammot from being semi supportive, to very concerned, to down right disbelieving, and then, just this summer, asked me for a divorce because I did not fulfill his needs the way he thought I could be, and then changed his mind entirely and decided to give it the old college try as long as I hold up my end of what he thinks is the marital bargain, and then lately, seems to be back to the supportive concerned phase.

All I can offer for an explanation, if there really is one, is to suggest it may be similar to the phases of grief. Denial, Anger, Bargaining, Depression, and Acceptance.

I think our spouses, significant others, friends, and even our children, go through the phases, probably not in a clearly defined pattern, but, in some way the same as when a person grieves the loss of the life of someone close to them. Those closest to us are grieving for the loss of the person we either used to be or were supposed to be in their mind based on the relationship, in my DH's case it was the wife he imagined he was going to have. I never really fulfilled that, and he naturally had to come to terms with the loss of that life he anticipated living with me. Did he grieve in a way that was sensitive to me, not all the time that's for certain.

I think this summer he went into the anger and the bargaining phase, but, now is moving into the acceptance phase. The depression phase actually preceded the anger for him, which isn't uncommon. The phases of grief come in a unique way to each person, and for him, he gets depressed first, then he reacts.

I love him. He loves me. I miss the person I once was, how can I expect him to not miss her, too? I long for a life free of this disease, and so does he. The question isn't should he have a negative reaction to his grief. The question is, how committed are the two of you for the long haul? Is this relationship one that you are willing to fight for, and is he? The only way to answer these questions is to have a serious talk, and ask him point blank, given the situation you both will be in, and the fact that there are no guarantees in life for anyone, him included, to have perfect health and long life, what is it that both of you want. My DH really needed to hear from me that I didn't want to be this way, I hate it, and I fight it, but, that I need him to understand that I can't always win, and that I will need his help.

I hope you get some answers, and I really hope you will have love for who you are and not who they want you to be.

mountaindreamer
12-07-2010, 09:51 AM
thanks teresa for sharing your personal story. Sometimes it it hard to put our stories into print, but so often these stories truly help those who need our help.

I too am with a man that was in and out of my life after my diagnosis. We were married when i was diagnosed, and he felt cheated bymy illness. his life had been affected, and it made him mad. We divorced, but later became friends. We are still together 16 years later now, and are great friends. He has gone the full cycle that you spoke of, and i am thankful that i was still here when he made it around the circle.

Nonna
12-07-2010, 12:09 PM
Having Lupus and having a relationship is something that is hard to balance (I think), mine broke up before I knew I had Lupus. I couldn't be the wife he wanted; I couldn't work, raise children and keep the prefect house. One thing always seems to get missed. Like Phyllis we are friends now; he is concerned for my health. He has gone full circle also. At the time we divorced, I was hurt and couldn't understand what I had done wrong; I just knew I wasn't wanted anymore. It was hard; but I started over with my life. I continued to try and do all 3 things; but it took a toll on my health. I'm paying now. So like the others have said, we need to remember the spoon theory and prioritize our wants and needs.

We need to remember that we are important. We have feelings and we are people who matter in the scheme of things.

Twitchy Nonna
sharing good thoughts and love

rob
12-07-2010, 05:23 PM
Excellent post Phyllis. Perfectly said

I'll second that Mari.

And Teresa, as well as Nonna, both of your responses are filled with wisdom, yet tempered by a good dose of down to Earth reality. Very well said one and all.

Rob

MicRoMediC
12-08-2010, 10:35 PM
DUMP HIS A**. There is someone out there for you that will love you for who you are and will accept what you have. One that will research your disease and the process and know the symptoms and ask you everyday how you're feeling and if there's anything that he can do for you. I found mine and I don't plan on letting him go.
I'm done now, sorry.
Micromedic

OHMEOHMY
12-19-2010, 08:29 PM
OH, rob, how i love your post!!!
hypochondriac is what most of us are called, both before AND, sometimes, after a firm diagnosis.
it is so sad. one can look normal, but, inside, feel like they are dying!
finding a partner is very problematic...unless they, too, suffer from a chronic disease and it's associated pain, it's very hard to find understanding. even from people who know you, live with you, SEE you.
Denise, if your BF won't educate himself about your condition, go it alone. or start looking around for a new partner!
i know from experience that people in your life who don't, or won't, understand can be more hurtful than the disease itself, causing guilt and stress that will only make you MORE ill. AND, no matter about lupus, you are an individual worthy of love, worthy of compassion!

DeniseB1069
12-21-2010, 09:17 PM
Thank you so very much to all who jumped in here. For those of you who shared your personal experiences, I am truly touched, by your willingness to bare your private pain, in order to give someone you dont know,(ME!) the support to move on to a new day. I am grateful, thank you so much!