"it's All In Your Head"

[mkoven]

At long last, it's confirmed. both of my parents believe that all of my difficulties are psychological. I can't tell you how frustrating this is. and there's no convincing them otherwise. having documented medical conditions isn't enough. I suppose I sort of suspected this. It's just painful and infuriating to have it confirmed. Makes me not want to talk to them. At least, not mention anything medical. Sad and angry.

[Megan]

I'm so sorry your parents don't understand. Hang in there, there are people who do.

Meg

[Ernie]

Hi,

I am sorry that you don't have any compassion and understandind from your parents. I think they should see a psychologist!

[Radha]

i know exactly how you feel, in the beginning, when doctors had no ideas what was wrong with me, my parents and family also didnt believe i was really sick

and i have to say that after so many years and even now that everyone totally knows and believes how sick i am, still i can never forget how alone and

desperate i felt during those terrible times and still i feel a very strong need to keep proving how sick i am, and i can never forget the pain they caused me

even though i think i have forgiven them, i feel so bad for you that you have to suffer through this mental pain, i hope you have some friends or someone

else you can talk to and who will be open minded. we are all here for you

radha

[MightyMouse]

For many years, my mother and sisters and father all believed I was making all this stuff up. I got to the point where I would not discuss any health issues with any of them. Eventually, my mom came around... the others, well, I've pretty much written off with regard to being emotionally supportive of my struggles with my health.

Nina

[Guest Sandy Sims]

Best bet, assuming you have a doc who DOES believe you, is take them to the appts. This works in that you probably shouldn't be driving anyway.

Also, when you take your BP and it IS off the wall--show them the readings.

Past that, I hear you and feel for you. Is the worst part of this--it's so lonely at times.

XOXOXOXO

Sandy

For many years, my mother and sisters and father all believed I was making all this stuff up. I got to the point where I would not discuss any health issues with any of them. Eventually, my mom came around... the others, well, I've pretty much written off with regard to being emotionally supportive of my struggles with my health.

Nina

[firewatcher]

I am sorry. It is a sad and lonely feeling and I think we have all been there. I was told that I was lazy and out of shape for 20 years, and my Mom said she felt so guilty once I was finally diagnosed (actually MISdiagnosed) with asthma. They will understand...eventually.

Chin up, we all support you here. <<hug>>

Jennifer

[lorrie]

Sorry that your parents are being like this when you need them most. I totally understand because I went through this for years. Most of my family has come around now that pretty much all of them have witnessed an episode and they watched the Mystery Diagnosis show with me about POTS.

I still have a few that doubt I feel as bad as I do at times. They think I need a good therapist to talk things out. But, you know what? I have gotten past the point of needing them to understand. I know I have a real illness and I realize the most important thing is to take care of myself.

Hugs to you...things will get better!!

[mkoven]

thanks you guys for the support. It does feel really lonely. I don't think taking them to appointments or showing bps will help-- my mother thinks my low blood pressures are brought on psychologically. I asked her how one could will one's bp to 70/30, and she said some combination of it's not possible to have that low of a bp and that somehow my psyche made it happen. and clearly I"m neurotic for monitoring my bp.

My parents have made up their mind. I get no where arguing. I tried yesterday, with, "How does my psyche produce genetically defective collagen." "How does my psyche dislocate joints?" She just doesn't understand how something like ehlers-danlos is possible. So it doesn't exist.

Although my visit to Cleveland was mixed, I still did get confirmation of pots and nmh due to excessive pooling, and a hypercontractile heart. I told her this at the time. but she decided to remember the whole thing as "they found nothing at Cleveland"-- and transmitted this to my father. When I tried to correct this wrong memory, she persisted in her interpretation. And she shows no interest in learning about my ACTUAL diagnoses. I forwarded her the link to dinet and ednf-- probably in vein. (they must be some crackpot diagnoses--the internet being a wacky place...she is all convinced of her interpretation, despite her having no medical or psychological training.)

the whole thing makes me so mad and disappointed.

It wouldn't do any good, but part of me wants to scream "so is it your psyche that's caused all your health problems--such as her knee-replacement-needing arthritis, or the various other "real" ailments she suffers from."

I want to continue a relationship with them, but the only way to do so is to keep my mouth shut. And then any display of physical weakness-- from my walker to my needing to lie down or take a break--is a sign that I'm a headcase.

[kjdube]

I have gotten past the point of needing them to understand. I know I have a real illness and I realize the most important thing is to take care of myself.

I'm sorry to hear that your parents don't have a clue. Its frustrating and hard to be young and not in control of your life. The quote above is great advice, don't let what others think bother you - you know the truth and know how critical it is to take good care of yourself.

Also... just wondering if you had a brain MRI... since eds and pots can be linked to chiari malformation.

[Michelle F.]

I'm sorry you do not have the support you need so much from people in your life that are in such key roles. I have a little of that, but it is from relatives that live far enough away, that we just do not have much contact with them. This is helpful for my own state of health. Holidays are another story. I do hope that something will happen to cause a change of heart and mind for your parents. You have a lot of support here and I am glad you came here to share your struggles.

Michelle F.

[delphicdragon]

So sorry that your parents aren't understanding about this whole thing. I hope and pray that they come around soon or if not, at least accept you for who you are and still love you and understand you despite your "psychological" problems.

Sara

[momofsara]

Just adding my 2 cents worth, I, too, am very sorry you are not getting support from the people who are supposed to love you and support you the most. Sometimes people just won't see whats wrong for being in denial. They feel as if they are out of control of a situation, therefore it does not exist. I truly hope they come around to see that your condition is real and that you really need their support and help. Sending you the very best wishes and long distance hugs......Susan

[Tessa]

I am so sorry that you have to go through this. Parents are supposed to be the first ones to understand our health issues and suffer. At least, we expect them to support us... But this is only the theory and sometimes you can find the support from friends instead that from your relatives.

I know how you feel, because I have been through it too.

They always thought that I was healthy, that it was in my head and that they made me perfect...

Our differences increased and we have not seen echoder for over a year...

A week ago my father came along and said he wanted to try again... And here there are now, trying to understand and accept the situation... Though they still insist that they made a perfect child...

I think that they just need time to assume and accept, but at the end, your parents will get there too.

You have my support.

Take care,

Love,

Tessa

[Maxine]

I am also very sorry you had to deal with this lack of support from your family. It's terrible, and I hope things change for you soon. Even with "proof" in all the medical records, and still you have to deal with the doubts. Then the Docs who have validated your symptoms must be nuts too----right? NO.........it's not right.

They are wrong, and it's very sad. You need all the support possible, as these disorders mess with our heads enough, we don't need family doing it too. This is on top of what the ignorant medical community does to us, and how we have to deal with such dimissive docs who also insist it must be in our heads. If you show THEM proof in the medical records, then once again, those docs who validated us must have it all in their heads too, and of course they can't be credible doctors. Even if their from NIH, or they have an MD-PHd in genetics, and one of the top researchers in connective diseases in the world.

I've been through all this, and every time I read stories like yours my heart goes out to you, and all the other people dealing with such madness. They know in the back of their minds that we have a REAL illness, and that is what hurts all the more.

I have my dad's support, but he still doesn't fully understand all of this. My sister in law likes making a mockery out of me, and tries to convey to the rest of the family what a hypochondriac I am. I don't think they all believe her, but I just don't speak about my health problems now. It's too big for them to understand---- at least the ones with the closed and simple minds.

My heart goes out to you, and you have all my support.

Maxine :0)

[gertie]

I'm sorry for your situation. I know how hurtful it is when family doesn't believe us. In my case I'm old now & have lost my parents but I've been dealing with the same thing from my siblings & now my child for 20 yrs. I no longer even mention I'm sick. If I do I'm ignored. I've come to realize it's all about them. I've had them tell me, "you've got it made". My family is always telling me how sick or stressed they are. Try to ignore them if possible.

[Angelika_23]

I had issues with my family understanding - they kept saying I had anxiety or I was making it up, whichever was more convenient.

I took my dad and sister with me to Vanderbilt, and they got to see firsthand what happened when I was off meds for three days, and they listened and took notes when I saw the doctor. It was a very good thing. I still don't think they understand it totally- but they do accept something is wrong with me and it is not "in my head"

Angela

[ladyt]

hi hi .....

Family and parents are people too, and people are strange. Non of us are perfect and generally we have a way of try to figure out the world in easy boxes. We do jugdje on to litle or no information. Most of us have a lot of potensial to grow more emathi and understanding.

Its hard when the people closes too us dont understand and even belive us to be "liars" or hypicondriacs. because strugling whit health one need some suport now an then. ust too keep the head over the water...

Its a bunch in the stomac when people close to one direct or insinuet that on are not trying hard ore its all in our head.

hang in there... this site is full of people that know what is like....

[taylortotmom]

Dysautonomia is a strange, funny word to describe an even stranger disorder. It is complicated even for those of us that live with it day in and day out to understand. Sometimes, when people do not understand something it is easier to just dismiss it. If they don't understand it- it doesn't exist. I know this sounds simplistic. With your parents, it may be easier for them to accept the fact this disorder "doesn't exist" than to accept the fact their daughter is very sick and there really isn't a lot anyone can do about it. It's a loss of control. By saying it is "psychological" and something you have brought on yourself- they are putting you in control. You can just stop all this and be well- problem solved. To be honest, the reality may just be too much for your parents.

I know my mother has really had a time dealing with this- initially, she too blamed "stress" and then when she realized it wasn't stress, she had to deal with the fact there really wasn't anything she could do to fix it. That is a hard thing for some parents. Parents that like to "fix" their kids' problems can really have a hard time with disorders like this- again, it's a control issue. So, even though your parents may never admit to this--this might be part of the issue. What you need to do, is to come to acceptance that your parents just do not understand and may not ever- take care of yourself the best that you can. You can really do a lot of emotional and physical damage to yourself trying to make loved ones understand something they are not ready to understand.

Carmen

[Bella127]

I'm so sorry that your family doesn't understand. That can be one of the most difficult things to deal with when having a chronic illness. Some people will just "not get it" no matter how hard you try to get it through their thick skulls..

Too bad they couldn't have been there for your tilt table test (if you had one)! That's the time to let them really "see" you going downhill, and hear the doctors saying "her heart rate is skyrocketing, her BP is low", etc.

Have they ever gone along with you to a doctor's appointment? Have they ever seen you nearly pass out because of heat? Although, with some people, even when seeing something like this...they might be so stubborn in accepting that something IS medically (not psychologically! ) wrong, that even seeing something like this wouldn't push them over the "edge" into believing.

If possible, could you take them to an appointment, and have your doctor talk about the seriousness of POTS and the symptoms that you deal with on a daily basis, etc.? Just a thought. Maybe listening to an "expert" will change their minds.

I have to say that I agree with taking care of yourself FIRST. The emotional toll of this can easily exacerbate POTS symptoms, as well all know. Please try to believe in yourself, and know (as I know you do) that you DO have something legitimate, and that some people don't have the capacity to understand unless, maybe, they have something similar happen themselves.

It is so difficult when you don't have the support and understanding of those close to you, but know that you have that here. We all understand where you're coming from. ((hugs))

Chrissy

[juliegee]

My heart breaks for you. As human beings, we all crave our parent's love and approval. By negating your experience, your parents are withholding that from you. You are not hurting alone. So many of us here have experienced similiar family relationships.

When my son first became severely ill at age 12, he was unable to eat without vomiting.. All of his local doctors told us that he was mentally ill. I was terrified. I lectured him many times (as he loves to remind me!) "You had an awful stomach virus. But, you are b-e-t-t-e-r now. You just think you are sick, etc." He finally persuaded me that he was really sick and over time I've become his biggest advocate.

Your parents may turn around. If not, they're the ones who are missing out on an authentic relationship with their precious child. We don't chose our families, of origin; but as adults, we can re-create better ones with the people we chose to associate with. All of us here are your new family.

Hugs-

Julie