In Need Of Some Advice!!

[Steph06]

Hello Everyone,

Recently I found out that my sister believes that my symptoms are due to stress and what I have is not real. She said that popping pills is not the answer and if I would just talk to a therapist this would all go away. My Mom & Dad have been really supportive and have tried to talk to my sister but she does not listen. My husband even sent her an email letting her have it. I don't know what to do. Does anyone else have family or friends feel the same way?

Stephanie

[Guest tearose]

Sometimes the only thing you can do is let go. You can offer her literature, offer her web links, speak kindly and try to explain when she is able to "hear" you, but don't allow this to wear you out!

There are people who think "if you only did------------" fill in the blank with any of the following selection:

1) Took this herb or stopped taking that herb

2) Stopped taking that vitamin or took this vitamin

3) Took this drink or ate this food...

4) Exercised more or exercised less or tried this machine or that machine or meditated in this position or....

5) Saw this doctor, stopped that type of intervention and tried this...

you get the idea?

If you are ready to do the most loving thing for her and for yourself, what I suggest is to hold in your heart the deeply rooted belief that those who love us, or truly care, are desperate for us to "BE WELL" already. It is not their frustration with us that we feel, it is their frustration with themselves for not being able to accept what we have to live with. They want better for us and they just can't get past that we can look so good outside but be so messed up with our internal Autonomic System.

hugs to you,

tearose

[Tachy Phlegming]

Tell her that that would be amazing but that you have to know exactly what to tell the therapist to make it go away. (Having her tell you what the therapist should say back would also help).

You might tell her as well that there are a bunch of people online who also would like to know what they have to say to make it go away -- without pills. So could she please come online and tell us (or you could write out what she dictates to you)?

I will say any magic words there are. I am sure everyone on here would. Collectively, we have used all the words in the English language, used every permutation of words imaginable -- and still, the blood pressure swings, pulse swings, and the mess which accompanies those, follow us.

I think I would be very firm with her and tell her that it's in her genes, that denying that you have a major illness will not in fact make it go away -- and that if and when it happens to her, you won't be there for her. (And tell her that she should be very scared because it's a living nightmare.) With that short message, you might send her some articles from medical journals and refer her to spcific threads on this site.

[fighting4health]

My dad oftentimes tells me about articles he read and the vitamins they recommend, or studies unrelated to dysautonomia saying I should do this or that for symptoms. I just tell him each time that I have a rare condition and need to stick to my specialist's plan then try to change the subject. I don't ever expect for him to understand completely and have come to a bit of peace with that. I see a therapist about once a month and more often if needed. It definitely helps my stress levels and keeps me strong. I talk about my symptoms and dealing with my dad in sessions and it helps a lot. I certainly don't think your condition can be cured with therapy, but it could help cure the frustrations with your sister.

[pat57]

Well, I'm probably older then you- I'm 52 - and I think because of my age I don't care very much what other people think. I have learned to say

what I mean and I expect people to believe what I say. If they don't, I seriously doubt trying to get them to understand helps.

I do think expecting them to believe you will come across, if that's how you feel. I know its your sister but you do not need her to understand.

Also , if you think about it- half of our Drs. tell us its not physical so I would try not to be angry with her . I think if you use time and energy trying convince her that will cause resentment. Good luck

[erik]

My sister seems hung up on "anxiety" or "stress" even though I'm not an anxious person (though she sometimes is . She hasn't made an outright denial of my POTS symptoms, but doesn't seem to buy into it. She and others are "invested" in other opinions since that's where they stood since I was a kid. Changing their minds now would entail realizing they've hurt me for 20+ years... I think they have understandable psychological barriers to that, as would anyone.

I like Tearose's list! People will seem to come up with an explanation that satisfies them fully within about 2 seconds. And if you don't go along with their theory then of course that means you deserve what you get. I am sure we all wish it were so simple. The full implication of "bodily functions beyond conscious control" seems to escape many... although since stress can exacerbate symptoms some confusion is understandable, but not obstinance in the face of explanation.

[kiltedharry]

Hi!

I know the problem of explaining POTS. The most people can?t realize like it is to live with this illness. And because there are no "normal person understanding" information?s in german in the net ( i came from Austria), it is much more difficult for me to explain.

[yogini]

I think you've gotten some great advice. You are actually lucky that your parents and husband believe you and support you. Many people on this forum don't have any family members that believe them.

I know it's your sister and it hurts. But remember that YOU are right and SHE is wrong and doesn't know what she is talking about! I have found that with important people in my life that don't understand, I'm best off not talking about my POTS. If she tries to offer you advice, I would just try to change the subject. I really don't think you need to justify yourself...if you are feeling feisty, you could tell her that you are being treated with the latest research and if she can find an article about how therapy can cure POTS, you'd be happy to read it!

[marni4u]

Hello Everyone,

Recently I found out that my sister believes that my symptoms are due to stress and what I have is not real. She said that popping pills is not the answer and if I would just talk to a therapist this would all go away. My Mom & Dad have been really supportive and have tried to talk to my sister but she does not listen. My husband even sent her an email letting her have it. I don't know what to do. Does anyone else have family or friends feel the same way?

Stephanie

[marni4u]

I can relate. I had in-laws who made similar comments, which in turn, made my husband think the same way. Now, my marriage is ending with the dissolution being final on monday. I had a new doctor imply I had munchausen syndrome and send me to a shrink, even tho I brought all my medical records to him. Some people just don't get it and never will. All you can do for your own piece of mind is ignore the non-believers.

[maggie]

I was just reading a book when I came across this thought, accepting people as they are and dropping your expectations will free you up from stress and pain. and make life easier. I though this was fitting to this question. Why try so hard to convince others about your health? You know the truth and there really is no need to convince others of it, only yourself. Why waste energy on those who won't be open minded or show compassion save your energy for yourself and let go of what you cannot control. Remember these words when you come across something you don't understand and accept that person for who and where they are emotionally and physically.

Maggie

[Mrs. Burschman]

I think your sister is the one who needs a therapist. No offense.

[Steph06]

I want to thank all of you for the great advice. I am very blessed to have all of you as my support group. Like Maggie said I am not going to waste my energy on things I can not control. I am going to try and ignore what she thinks but I know sometimes it will be hard since she is my sister. In the meantime as soon as my sister tells me the magic words to make all of this go away I will be sure to let everyone know!! Thanks again for everything. Hope all of you are doing well. As always I will keep all of you in my prayers.

Stephanie

[ssparksnj]

It's funny I came on here tonight because my son's father sent me an email saying if he is only making "C's" in college he should quite. That if he is not focused enough on school to get "A's" then why is he wasting his time. Needless to say I was quite angry. My son and I are thrilled that he is even in college. This is his 3rd year and it hasn't been easy but he is still kicking along. His Dad who obviously doesn't live with us has never really accepted my son's diagnosis of POTS. He thinks its anxiety or it's in his head.

Reading everyone?s responses has helped me to remember that it doesn't matter what his Dad thinks, we know the truth.

Thanks for the reminder.

Sandy

[blsvlo]

I can relate. I had in-laws who made similar comments, which in turn, made my husband think the same way. Now, my marriage is ending with the dissolution being final on monday. I had a new doctor imply I had munchausen syndrome and send me to a shrink, even tho I brought all my medical records to him. Some people just don't get it and never will. All you can do for your own piece of mind is ignore the non-believers.

I am so sorry :-(..... i can not imagine what you could be going through, my heart really goes out to you... If you need to talk to anyone please feel free to message me. Hugs and Kisses, Lisa

[Steph06]

I can relate. I had in-laws who made similar comments, which in turn, made my husband think the same way. Now, my marriage is ending with the dissolution being final on monday. I had a new doctor imply I had munchausen syndrome and send me to a shrink, even tho I brought all my medical records to him. Some people just don't get it and never will. All you can do for your own piece of mind is ignore the non-believers.

If you need to talk please let me know. I am so sorry to hear what you are dealing with. Do you have any support from your family? Please keep me up to date on how you are feeling. Hope to talk to you soon. Take care of yourself and God bless.

Stephanie

xo

[jagpots13]

My sister asked me on the phone the other day if my husband was supportive or does he think your "making things up". First of all I thought that was a strange question and it struck a nerve. I kept my composure and said well no, he's supportive. But how do you make up puking your guts up anytime you go out in the heat or get over exerted in the a/c, eyes rolling back in the head, going completely limp and passing out, having a heart rate monitor on which visibly shows your pulse being high as a kite and the changes that take place upon sitting and standing!?!?! She said well yeah, I guess so, sounds like he's a keeper then. If you don't have a heart rate monitor, get one! At least that's "proof". I got myself a timex hrm with the band that you wear just under breast accross your chest. I got it to be able to figure myself out. It was only 40 bucks on Amazon and it works great. Keeps a running tally of your average hr and your peak.

My Mom also has a lot wrong with her (believe it's the same + a lot more). I also find myself having to defend her a lot of the time to my Sisters and Aunt. I just say you have no idea unless your living it. So they go to each other to talk about us. Well all I can say is thank God they didn't inherit it. Just pass it off as ignorance just like the MANY docs that came before a diagnosis and pray for their eyes to be opened is all I can do and all I can advise. So sorry! I know the feeling!

[Rene S.]

Stephanie,

I feel for you. I have the same thing. Many of my so called friends have dropped me because of my invisible illness. They don't understand there are days that I can't move or feel like dirt. When I need them the most, they are no where to be found. As for family, my girls, they just believe it's purely psychological. Even though I have med reports they still think that I bring it all on myself.

For awhile, friends and family were starting to believe I was anorexic However, when I was tested and diagnosed with severe gastroparesis, that's when they dropped the anorexia nonsense.

I'm sorry you are going through this.

Rene

[Tammy]

OMG Smack that woman (I know she's your sister, but really!) so she can get some common sense in her head. She is being very ignorant and inconsiderate to your health.

[Tammy]

Oh, and also, show her how your blood pressure drops and your heart speeds up when you stand using a blood pressure monitor. Show her how you can't even feel your pulse when you've been on your feet for too long, and any other things that are visible. This is the only way people can understand it. If your heart is racing out of your chest and your shaking like a leaf, but are calm and collective, she'll realize it's a physical thing, not psychological.