Parent In Denial Of Pots

[MomtoGiuliana]

I know this has been faced many times by many of us, so I hesitate to even bother to write this. No good reason to sound the broken record, other than my personal frustration.

I've decided to be evaluated for EDS in light of my sister's recent tragedy. I just feel it should be ruled out once and for all and by a specialist.

Dr. Francomano in Baltimore is willing to see me. I need to have medical info from all family members. To my shock, the response from my dad is that all my problems were/are caused by my choice (??) to overtreat Hashimoto's thyroiditis, including all POTS symptoms and my placental abruption apparently. Since he is not a medical dr and has not even reviewed my medical records not sure how he has come to this. I now realize he won't even accept that POTS is a condition and that I am diagnosed with it. He is 75, so I have to remember that he is getting older and may be losing his faculties. But it is hurtful, particularly in light of what we are going through as a family right now. I would probably be even more upset, except that I am still struggling with deep grief for my sister and nephew.

Frustrated that he is unwilling to fully share medical information, but I am guessing that I can get appropriate diagnosis without his cooperation.

Katherine

[EarthMother]

{{{{{{{{{{{{{{{Gentle Hugs}}}}}}}}}}}}}}}}}}}}

What makes it so hard for me is that I continue to have expectations when it comes to my parents. It must be in our DNA or culture, or in our Hallmark cards. But there is that assumption that parents should love their children, unconditionally. They should trust us, support our goals and comfort us when we are feeling down. Even the dysfunctional family TV shows seem to have each other's back and even though we may not have grown up in the Ozzie and Harriet homestead, a part of us may still cling to that image of how things "should be".

For me the "suffering" comes when how I think things should be is wide of the mark of how things actually are. My mother won't even pick up the phone when I call. Now, my story could be that Mom can't handle my illness. And this could be true, she has certainly told me on several occasions that I am just making everyone's life around me miserable and I should just grow up and take care of myself and leave everyone else alone. Or it could be that Mom can't talk with me anymore, because there's something just wrong with Mom. And I don't have to fix Mom. She's the way she is. Am I sad? Sure. Do I still call and listen to the voice mail recording say "I'm sorry but the caller you have reached does not have a voice mail box set up. Goodbye." Yep, more times than I know why. Its a habit I suppose.

Sometimes I think it is just too painful for a parent to hear about a child's illness. Even when we don't talk about it. To see us or interact with us on any level may just be too hard for them to handle. Maybe it activates their own cellular memories, perhaps they feel guilt or worry that maybe "they did something wrong." After all the story is really always about THEM, not about us even when we seem to be the target of their opinions.

I wish your Dad understood the organic nature of your illness. I wish he hugged you gently and said he was so proud of the way you are fighting so hard to do as much as you can to improve the quality of your life. But then again, I still wish my Mom would pick up the phone. But for now, this is how it is. Its not pretty. We wish it was different. But this is how they appear to be in this moment. So given that, I wish you some peace and space around the issue, and the ability to love without conditions all that is, in this moment.

Deep bow.

~EM

[Guest tearose]

Dear Katherine,

Oh, how I hear your pain and feel your hurt. It just never seems to end sometimes. It is so normal to feel so abandoned when those who we love and trust suddenly shock us with their opinions that "maybe we just need to do .............and we would get over it".

It is, in my opinion, a dangerous place for us to be in. We are so desperate to get better and live a normal life that we, having a new disease, so misunderstood, actually do more harm by trying to please others and "try this or try that".

I have no question that my deeper ability to love, forgive and be compassionate comes from the never ending hurtful comments and actions of others. It becomes increasingly more difficult to "trust" however, if we allow ourselves to be ruled by the intentions of others and not by our own true understanding of our bodies, mind and soul. I realize that we here truly do walk to the beat of a different drummer and having the strength as you do now, to pick up and move forward looking again for answers, it so commendable!!! You accept what you have but continue to want better. That is amazing Katherine. You have not given up on your desire for better and as hurtful as your own father's words are, try to accept it as just his desire to fix you and frustration for not knowing how. Remember, if our doctors still don't understand this process you father is also of limited knowledge of the process.

Please continue looking for answers. EM understands, I understand, here we understand. Know that I am sitting beside you, walking the path with you.

lovingly,

tearose

[mkoven]

Hi KAtherine,

I'm so sorry to hear this. My family (parents) also don't get it or want to get it, and have decided that my health issues (eds- joints, ans stuff, migraines, etc.) are psychological. It makes me feel furious, sad, lonely and misunderstood. There's a lot of family baggage in my case that predates these issues of people not getting a lot of empathy or understanding for their struggles and my parents feeling threatened or shutting down when other people were struggling. My mom has intermittently shown glimmers of "getting" it, but then will say something that shows she really blames me and "stress" for my difficulties. My dad is the most dismissive. I guess I should be glad that now I'm an adult and am able to get the social and medical support I need without only having to go through them. But it still stinks. But even though I know all that, I still stubbornly want to share with them, have their support, and have them understand. For me, it's so important to know that there are other people who do get it. I don't think I'll ever stop being frustrated and sad. And I still do want relationships with my parents. But I do need to know that there are other people I can turn to--including my dinet friends! It's so hard not to be able to have the people you love be on the same page.

Hugs.

Michele

[MightyMouse]

Oh Katherine...sadly, I know how you feel. My uncle confessed to me that my dad thinks I've made up all my medical problems to get attention. My dad has yet to tell me directly, but then, he doesn't tell anyone much directly, so I shouldn't feel left out. I suppose the fact that I'm not the emotionally close with him should help me feel less of an impact, but as you know, most people, me included, want our parents' belief, care and support. It was hurtful to find out he was making jokes about my health with my uncle.

(for those who may be confused b/c I'm mentioned my step dad has cancer and sometimes refer to him as my dad...I'm speaking above about my biological father... and to confuse matters, I have TWO step fathers, and the one who is sick is the FIRST one, the one I grew up with until I was 13).

Take a deep breath and try to remember you can only be responsible for how you conduct yourself. It will still feel terrible knowing he doesn't believe you but you can at least know that you have the support of many, many others who care about you; and you know that you'll be a better parent to your daughter for having this experience b/c you'll never treat her this way yourself.

With love, Nina

[futurehope]

My mom pities me and on one occasion thought maybe she should have aborted me. I told her I don't pity myself so she should refrain (if possible). If my own daughter has ailments, I accept them as part of life. My health is not "perfect", so I have no expectations about how someone else's health should be. Therefore, I can accept ailments in my own child without "pitying" her.

It boils down to the outlook you have on life. I believe that. A parent may feel responsible, guilty, full of pity, whatever, depending on how they view life. I am a religious Christian and every life is valued by me and I look at illness as an opportunity for me to grow in my compassion and love towards others. I have no self-pity at all. I can empathize with other people that have "invisible" ailments and suffer misunderstanding from others.

Nobody's life is perfect. We are here to support each other and minister to others.

Okay, off my soapbox. I certainly hope you can get genetic testing without your father's cooperation. Maybe he has a brother that would volunteer, or there is another living relative whom they could use?

It is difficult enough to go day to day with this ailment. I do not need a person's callous remarks added to the difficulties. If at all possible, I steer clear of people who do not nourish me spiritually or emotionally. The last thing I need is to allow other people to drag me down. I am on my own walk and they are on theirs. I have a choice as to who I allow into my life. Obviously, if we are talking about a relative such as a parent, it is more difficult to "disengage". I get around this by having a great relationship with my mother and ignoring her remarks that are hurtful (to the best of my ability). She can only be what she is able to be and I cannot blame her for who she is and what she doesn't understand. Easier said than done.

I do my best to be the supportive person to others that I would have them be to me.

God bless you. You are valued and important.

[mjan]

HUGS to ALL !!

So sorry for ANY one here suffering from misunderstanding.. feeling dismissed..misunderstood!! GOSH..I cannot believe parents do this~!

ANY way.. either your folks are in DENIAL..as that may mean that something THEY did (or did not do) caused you an illness/disorder. "NOT MY KID" syndrome I call it. OR..they are just choosing to remain ignorant. Certainly self centered rather than LOVING in my opinion.

Still..I know we want to be loved..understood..validated. ALL of us NEED that.

Guess why forums are needed. But try to remember..you are really NOT alone.. WE're here for you!!

Warmly, Jan

[firewatcher]

Katherine,

I am sorry he is being this way. I know when I mentioned at the family Christmas gathering that my POTS was genetic, my grandmother was quick to speak up: "Well, you didn't get if from MY side!" Actually, I probably did, she used to faint frequently and has many of the symptoms, just not as badly.

Guilt is an awful feeling, parental guilt is even worse; it isn't rational...you just didn't want your child to suffer from ANYTHING you could have given them. I remember when my first son was born, he was perfect...except for one toe, it was deformed exactly like mine and I had a stab of guilt so sharp it hurt! When my second son was diagnosed with anaphylaxis, shortly afterwards my husband realized that he also was allergic to the same food, just not as badly. He still admits guilt every time there is an issue with it (which is often.)

To ask about family history health issues somehow feels like a search for blame by those who may believe it came from them. It isn't rational or even true, you can't control your genetics, but since when are feelings rational? Coupled with the pain of your family's recent loss, I'm sure it stings even more.

I think the doctors will find what they need without your Dad's information, ask your Mom or an aunt or uncle if they are still with you. Anecdotal evidence can work just as well at times.

Peace and comfort to you and your family!

Jennifer

[momofsara]

Katherine, I'm so very sorry your Dad is not supportive of you. Speaking as the Mom of one who suffers with the effects of dysautonomia and numerous other maladies, I cant imagine not being fully involved in Sara's life. Yes, it hurts to my very core to see her sick, but also it makes my heart sing with joy when she has a good day and we can laugh and enjoy each other. The pain comes along with the joy when you are a parent. I hope you feel the love coming your way from this forum, because its definitely being sent your way. I hope your Dad will come around and become involved in your life, I know its very painful for you. Take good care of yourself and good luck with the new doctor. Keep us updated........

Love and (gentle) hugs,

Susan

[ramakentesh]

Maybe its because my onset was sudden, but most people in my family understand the condition - particular sense the Yellow Wiggle Greg Page has been so public about how bad the condition is.

There are times when they dont understand but if someone doesnt except what Im telling them they I generally dont value their opinion about me.

[MomtoGiuliana]

Wow--thanks everyone for your kind and thoughtful support. It really helps. I do realize, as I had said before, that many of us face this. And I understand the reasons why.

My dad is an only child and really never talked much about any medical conditions or symptoms in his parents. I don't know his cousins really at all. In general I've never heard of any chronic problems for anyone.

I wrote him an e-mail letting him know he hurt my feelings, that I understand why this could be scary and uncomfortable for him, and I laid out the medical facts (per my diagnoses by medical doctors). So far I have no response from him. Maybe sometime he and I can talk about it.

Thanks again everyone. I hope we are all able to resolve or come to peace with any lack of support from family. It's tough.

Katherine

[Desperate Mom]

I am new to this site and wanted to reply to your post about your father not accepting your illness. I am the mother of a child who has been very ill with an array of illnesses, the most recent one being POTS and chronic fatigue syndrome. Without going into all her health issues, I can tell you that it has been a real nightmere for her. I have learned and researched everything I can to try and help her, but her father doesn't quite see it like I do. I don't know why, but I think it's easier for him not to think that his daughter is really ill and needs help. He seems to think she can pull herself out of it if she wants to. It's amazing isn't it, how our own family members cannot understand the frusturation, pain and constant struggle that my daughter and you and other members on this board go through every day. I think it's unacceptable, but I can tell you that you have to put your own health first and try not to let what your father or anyone feels get in the way of finding relief for yourself. It is your life, not anyone elses, and as hard as it is not to have the kind of support you should have you have to do it on your own. That's how I deal with it anyway. It would be nice to be able to discuss my daughter's health issues with her father, but I have come to the realization that it doesn't matter anymore what he says or how he feels, because I know that I will never stop trying to find the answers for my daughter. I know it is harder if you have no one their to help you or understand what you are going through, but please dont let that stop you from getting your life back. I hope my daughter has learned how important this is, because some day she may have to do all of this on her own. I may not always be here and she will have to fend for herself. Please don't let anyone or anything ever stop you from finding the answers.

[Rachel]

Katherine,

I'm so sorry. It's always difficult to deal with people who are close to you and don't believe you are sick. It must be so hard to face this with your father.

I hope that the email you wrote to hime will be well received and that this will not cause long term tension for you.

Big hugs,

Rachel

[ana13sanchez]

Hello, I just want to say that I see for many parents or family members is hard to "belive" in this illnes as sometimes it seems like we are perfect!! my parents live at home with me, my husband and my 5 year old son, and I am a very independent kind of person so I never call anyone while I suffered of vasovagal syncopes, wich sometimes last almost all night, one after the other..... so no one at home saw all this horrible episodes, now my cardiologist finally diagnosed me with dysautonomia and mitral valve prolapse.... but sometimes my mom just says... I think you should do more excercise.... I think you should go out to walk every day... etc etc.... she seems to forget what I have and when I say I am very tired, she just keep quiet..... my dad... well, he just ignore me when I talk about this... he doesn't say nothing but I bet he doesn't belive a single word I say..... now my vasovagal crisis are controled with effexor and I am on a beta blocker to calm my tachycardia, but I am still having it.....there are days that I feel good, and some others I don't want to even move!!.... but the most sad part of this illnes is when family don't belive in what we suffer or just .... keep quiet..... just ignore......

[corina]

katherine,

i am sorry i am late, but wanted to add a few words. like EM i thought your dad could be in denial because he might feel guilty as he's your dad but can't do anything to help you with this. i think, in general, men have more trouble expressing their real feelings, they just want to solve a problem instead of listening (which i think is more a "woman" thing). i think it's a good thing you wrote an email, it might get him thinking and make him aware of your feelings. that is important as well to you as it is to him.

i hope all goes well and wish you all the best on your road to find out what is or isn't going on with the eds.

love,

corina

(ps: i hope i used the right words as i am a bit fuzzy today, but just had to write you)