On Family Matters ...

[EarthMother]

My heart always goes out for my POTS-peeps who live on a day-2-day basis with family members who don't understand. I am so fortunate that my nuclear family is amazing and supportive and that the people that I do choose to cultivate friendships with are kind and compassionate. So much so that in some respects I was caught off guard a bit yesterday when I spoke with some relatives that I seldom chat much with. It has been almost a year since my mother has spoken to me .... right around the time I got my wheelchair (coincidence? not much) ... I had kind of assumed she was just being distant with everyone in her life, then when I spoke with her sister and brother it turns out I was delusional ... it was just me. It would seem that the "family" pretty much thinks I just "play invalid" and that these issues are all in my head. Ahhh we all know that story far too well. One family member actually said some version of she'd rather be dead than be in a wheelchair. (Deep breath.)

There was nothing to say ... we all know when we come up against people who just aren't going to understand. So even as my mind continues to role play all of things I wish I had said yesterday (citing research, reading doctor reports, faxing my SSDI approval over the phone! lol) I realize the most constructive use of my time and efforts was to just put out a simple OUCH to my POTS family who have been there done that and feel the comfort in knowing that I do not walk (or ROLL!) alone.

Gentle hugs to all.

~EM

[sue1234]

((((hug))))! I totally relate. Initially when I would mention to my parents that I was going to a doctor's appt. to try and figure out why I couldn't stand w/o being lightheaded, they would just abruptly change the subject. It almost felt like a slap in the face. Now, I don't talk about my problem, and on the rare occasion that I mention I have a doctor's appt., I STILL get the same reaction. They have never in my 4 years of POTS asked if a doctor found anything, or if I'm feeling any better, etc. They just kind of ignore it. In fact, I occasionally travel out of state for a doctor's appt., and sometimes they know and sometimes they don't. They still never ask how it went. My mother-in-law, on the other hand, asks me all the time how I am doing, and wants to hear how my dr. appts. went. I have to give her credit for always being supportive.

It is very frustrating to know that parents, of ALL people, would not be behind us. I could not imagine "abandoning" my children emotionally when they would probably need it the most. I think my parents think if they can't see it, it doesn't exist.

I remember I had post-partum depression after my first child, and my dad made a comment one day to "just get over it!". If it would have just been so easy.

[tjanzing]

My heart always goes out for my POTS-peeps who live on a day-2-day basis with family members who don't understand. I am so fortunate that my nuclear family is amazing and supportive and that the people that I do choose to cultivate friendships with are kind and compassionate. So much so that in some respects I was caught off guard a bit yesterday when I spoke with some relatives that I seldom chat much with. It has been almost a year since my mother has spoken to me .... right around the time I got my wheelchair (coincidence? not much) ... I had kind of assumed she was just being distant with everyone in her life, then when I spoke with her sister and brother it turns out I was delusional ... it was just me. It would seem that the "family" pretty much thinks I just "play invalid" and that these issues are all in my head. Ahhh we all know that story far too well. One family member actually said some version of she'd rather be dead than be in a wheelchair. (Deep breath.)

There was nothing to say ... we all know when we come up against people who just aren't going to understand. So even as my mind continues to role play all of things I wish I had said yesterday (citing research, reading doctor reports, faxing my SSDI approval over the phone! lol) I realize the most constructive use of my time and efforts was to just put out a simple OUCH to my POTS family who have been there done that and feel the comfort in knowing that I do not walk (or ROLL!) alone.

Gentle hugs to all.

~EM

So sorry...my heart goes out to you! I hope and pray that as more information gets out there that people will understand more...I'm wishing for a televsion documentary etc. maybe Oprah? 20/20? Dateline?

You are loved and not pretending!

Tessie

[janiedelite]

One family member actually said some version of she'd rather be dead than be in a wheelchair.

Oooh so hard. The fact that they didn't even talk with you about their concerns over your "mental" health, but just gossiped among themselves is a real stinger. Like you have a choice regarding your health and what your body allows you to do???

Honestly, I don't know if presenting research and findings regarding your illness to them right now would do much good. It sounds like they're pretty entrenched in their beliefs. I just know how stressful that might be for you, which could make you feel sicker. I guess you could try if you feel that there is a really reasonable person in that group of family members, to speak just with that person. I certainly wouldn't try to convince more than one of them at a time, as it seems they've already taken on a "mob mentality" regarding your mental state.

Mostly it just seems like their loss.

This certainly does make you cherish those friends and family members who value you as you are, limitations and all. I'm sorry you had to be with folks who diminished your value as a person just because you have limitations.

[JeffKohrman]

I've had symptoms my whole life, and have been punished for every one of them, until just last year when I was diagnosed with POTS. My mother was suddenly very understanding, but my father doesn't seem to get it, so he just doesn't talk to me. Makes it a little awkward since I still live with them, heh. It feels like I've lost a parent, which is never easy.

Anyway, my point is that you really aren't alone, as you know. But it doesn't seem to get easier when incompetence rears it's ugly head, does it. At least we have the strength of friends backing us, no matter how far, or digital they are, eh?

Hope all else is well!

[futurehope]

We can have a double "whammy"....we're sick....people don't believe it.

EarthMother,

To your mother, the wheelchair was a constant physical reminder of something she is trying to suppress, and that is your illness. It was easier for her to ignore you and your wheelchair, than admit something is wrong.

Truthfully, when an ailment is ongoing and does not lead to recovery or death, people have no idea how to deal with it. They don't know what to say. They know something will always be wrong with you, so they don't even know whether to ask, "How are you?", since they know you are not well. It's actually easier to ignore the entire thing.

Frankly, since I'm not in a wheelchair, I will never bring up my "problem" unless it's medically necessary or I'm in need of assistance (like at an airport). I view myself as being similar to someone with Rheumatoid arthritis, or Crohn's disease, or something that doesn't get better. It's part of who I am, but sometimes, even I like to forget about it and pretend I'm healthy.

I'm sorry for how your mother has chosen to deal with your infirmity. I'm guessing she is not a nurse, right? Nurses are used to seeing illness, infirmities, people who need assistance, and they are generally more understanding of health issues. The rest of the population (those who are not nurses), usually don't have a clue as to how to respond.

You have been blessed to have friends that are not threatened and can relate to you on a more realistic level.

Your infirmity has put you in a position of understanding others in a similar plight. God bless!

[Maxine]

HUGS to you Earthmother.

I so understand your situation------that IS a big OUCH.

It didn't seem to matter anyway-----(citing research, showing my medical records, or the MRG (medical resource guide from EDNF on EDS)-------------it's just more for them to dismiss. My brother looked at me like I was nuts when I suggested he get his youngest son checked for EDS because he's so floppy. I said he should atleast get a ultrasound of his aorta done.

Some of my family members have been really cruel, and it doesn't seem to matter to them that I went to one of the top research centers in the world (NIH) to have all of my health problems validated, and be part of a research study for EDS. The people at NIH must be nuts too! I'm sure Dr. Grubb hasn't had much fun being on our side all these years---------I can only imagine how some of his peers may act. It takes courage for doctors to stick by us "nutty folks". Well, you know what I mean, nutty in their minds anyway. My psychologist wrote up a very nice thoughtful report for SSDI proving that any psychological problems I MAY have are seconday to my PHYSICAL health problems (his words), and of course from the continuous ignorance by anyone who doesn't know any better because they still live in a neanderthal world---(my words, not his). He put this in more of a diplomatic tone, which was very kind of him.

My other brother is much better about it, and his ex-fiance was wonderful. She has a sister diagnosed with NCS---and possible POTS. Her sister is a beautiful person too. It's so sad they broke up. His new girlfriend seems COLD.

It's bad enough we have to still deal with an ignorant medical society-----it's worse when there's virtually no family support---a much needed cushion to land on when we're feeling beaten down by the world.

EM, you have a stong mind, strong will, and a good attitude, and this will get you through. I'm glad you have this place to come to.

Maxine :0)

[futurehope]

On the bright side, things are looking up. I was visiting my endocrinologist at Hopkins. She sent in her young assistant physician to do the "intake" interview. I beat around the bush when explaining to him about me. I said things like, "Have you heard of orthostatic intolerance?" "Do you know of Dr. Pete Rowe at this hospital who works with pediatric patients?"

Finally, I just said, "I have POTS. Do you know what that is?" He did. I said, "How do you know about it?" He said, "I learned about it in medical school."

It doesn't take much to "make my day", and that young physician did. Also, the oral surgeon who just did my dental implant knew about POTS. He frequently gets POTS patients sent to him who need their wisdom teeth removed.

So, as time goes by (and I have been diagnosed since 2002), I can see "the word" is getting out. I suspect that may have an impact on dismissive family members:they will not be able to pretend POTS is psychosomatic, or they will look foolish.

[tinkerbella]

EM,

HUGS to you from me. Sometime we have to LAUGH right out loud as our real family fusses over their friends hang nails but dare we be on the phone with them and begine to tell them our week adventure and they anounce, " I have to go now."

I've made a whole new extended family that is healthy and finds me funny, interesting and allows me to talk. NO they ask me how I am.

Wait till the power wheel chair comes! HA!!!!! That's one I can't wait to see how they explain! Another thing now they want to text me instead of talking to me.

My hands hurt so bad to type and how many time do have have to repeat myself?????

Happy Thanksgiving we will see about that. As long as I don't mention anything about myself. What a Joke! I'm talking siblings here, as the kids have turned around.

Bellamia~

[erik]

Ouch does kind of sum it up. Good to turn to more supportive circles rather than let it drain you further. We're certainly here for you.

I sometimes look at these irrational responses from family as being other people's limits getting overloaded. Meaning, they can be protecting themselves from things they cannot handle, a situation pushes some deep fear/pain button for them, or the picture makes a continued relationship with you look like a lose-lose. That's not always the case, but sometimes stuff like that can go on. One highly speculative "perspective" is that your mom has the profound yet subconscious sense that she has failed because her daughter faces such difficulty and pain in life. Digesting that sort of thing is not in everyone's "emotional vocabulary". Neither the feeling nor the response need be rational and need not even emerge as a tangible thought or feeling for her... yet it can fuel "avoidant" or other non-productive response just the same. I'm no mother, nor am I likely to become one... but I think the "I failed as a mom" subconscious drive/anxiety is one of the biggies in this world.

Then again, "withholding" support or communication is kind of the staple of passive-aggressive or narcissistic personalities... shall we take up a collection and perhaps get your Mom the psychological counseling that she needs???

[juliegee]

So sorry, EM. It IS a double whammy. First, being sick & then having to deal with family that doesn't believe you. Somehow the "OUCH" is worse when it's your Mother

You are so smart to have formed your own amazing circle of support and not let your family drain you of precious energy...

I was thinking the same thing you verbalized today. How blessed I am to have all of you (as extended support.) I feel like I've found kindred spirits living all over the world that "GET" it- really understand what life is like with dysautonomia. It's almost like being re-united with long lost family members (or relatives you've never met.) Just having all of the medical oddities confirmed and explained among ourselves is so reassuring. Comparing symptoms and the day to day struggle in the trenches is invaluable.

Gentle hugs back at you, EM.

Julie

[lissy]

I'm sorry you have this disconnected relationship with your mother . I have that with everyone in my life. Theres 2 type of people in the world ones that can have compassion, understanding,and are able to put themselves in others shoes. Or those who are not capable God didn't give everyone the capacity to treat others properly. I learned about that the hard way as a child and no matter how much it hurts and you will carry it with you forever you have to not take it personally and not allow it to change you as a person. Sometimes things happen in peoples lives and it makes them take a different view maybe this will happen with your mother I pray it does.

Lissy

[firewatcher]

EM~

(((((((((((((((((((soothing hug))))))))))))))))))))

You have been there for me so many times, I can only send love and support! You can't pick family (at least not the genetic type.) There will always be people who don't WANT to understand.

I am sorry, it always hurts. Let it go and put your energy into positive things.

As deep a bow as I can manage through my Pilates sore back and legs.......

[Mrs. Burschman]

Ugh.

The nice thing about friends is that you can choose them. We'll be your family when they aren't!

Amy

[MomtoGiuliana]

Oh, so sorry. I know you have mentioned before that your mother is not very supportive. It does hurt. My dad is in denial. If my diagnosis does come up in conversation he says, "it's your thyroid". (It's so simple, your doctors are giving you too much synthroid or you are over-dosing.) Like I would choose to do this to myself or a dr doesn't know how to manage thyroid disease, which millions of women have. Ugh. I don't know why it is hard for parents or other family members to accept medical facts.

Know you are not alone in this challenge, and you have friends here!

[yogini]

Hopefully you won't hear from her for at least another year!!!

[potsgirl]

I'm sorry that you had to go through that experience, especially from your mother. I can relate to that....Yesterday while I was on the phone with my mom, I dared bring up that my fatigue level had been worse recently, and her comment was that 'I needed to get a project to keep me busy'. She suffers from Parkinson's, and had some major back surgery 2 months ago that's she still in skilled nursing care for, and I think she needs to be the 'sick' one. It hurts, but I guess I can give her that much since she's 80 and in poor health.

I'm jumping in with the others who say that you're (we're) all part of a big, wonderful, supportive family here, and I'm sending positive thoughts and hugs - big bear hugs - your way.

Jana

[Guest tearose]

Dear EarthMother,

I feel more than ouch, it hearts my heart for you.

It is such a saddness when those who we know should know us best just don't know us at all! It is an abandonment.

Please hold on to your own sense of self...EarthMother! You nurture many so appropriately.

I hope you feel the love of many here and I am sending you my love and support.

May this insult slip away and you be left with a greater depth of compassion (if that is possible!) for your mother's limited ability to love.

Eternally, your sister, tearose

[EarthMother]

And it is within

the simple

act of knowing

I am not alone

that lifts my spirit

and eases my pain

Mack's Mom perhaps expressed what is most in my heart in this moment ... It is like being re-united with long lost family members ...

In reading the lovely words of my dear Dinet friends there is no lack or longing that lingers in my being.

I am blessed and as always surrounded by love and light.

May we each hold the candle for each other.

Deep bow of thanks to everyone for lighting the way to such a wonderful place of acceptance and peace.

~EM

[shadesofgrey49]

So, as time goes by (and I have been diagnosed since 2002), I can see "the word" is getting out. I suspect that may have an impact on dismissive family members:they will not be able to pretend POTS is psychosomatic, or they will look foolish.

I definitely do think the word is getting out, thankfully.

It's so so terrible that people have such trouble understanding this. Even the people who aren't condescending and in denial seem to diminish it or not quite realize that we can't do everything normally. It's so comforting to have a place like this to come to.

[ladyt]

hi..

Sorry ro hear about your momther em..

It seems like illnes/dessisess are somthing one should die of or survive and get over whit.. Keep living whit it is not an oppsion, exept if injured in a careck ore somthing, and then also the person is espexted to figth back to walking..

People are so limitet in their wiew of things, like the use of wheelchairs etc etc.. For me this thing makes my life easyer to say the least. They give me a chanse to live a litle, and ust not onlyu exisite.. The wheelchair do not define me as a person, its an aid..

My mom is trying to be understanding. And in some ways she is. She understands quiet well my limitations. But she has a hard time in letting me talk about my limitations. Somthimes one need to. But she ust cant deal whit that at all. I have tryed to make here understand that i need to vent. Its not that the inless gett the better of me or that I am turning in to a bitter person.. Is so that i will not turn in to such a person i need to vent. Ore ust talk about it, like facts, not complaining about it, but my life is very very very difrent from most folks i know.

But people close to me is used to that i dont talk about my illnes ore limitations much. They know very litle about what i have. Some of them are very understanding. Because they have seen the change to the girl i was to the woman i am now. So i know they dont think me a hypocondriac ore somthing like that.

So when i started using a wheelchair etc, they where happy for me. They understand that i am in very bad shape. We ust dont talk about it much.

Then there is my inlaws. they are the ones living close to my (i do have a tendensie to bad luck, but in my bad luck there is always a silver lining usaly).

i dont know, maby some of them is trying in their way. i dont know. They never ever ask how are u..? I would only answer okey, so dont understand why they dont ask..

When i got to know them i didnt talk about my illnes even when asked. So my boyfriend blamed me for them not understanding. Last couple of years i have changed. I have tryed, explaining, but they brush me of. so now i have stopped mostly.

But it does anoy me when my mother inlaw says we shall be happy as long as we have our health in place, to me, like me and here should be happy about that. Notmaly after telling about a person she know whit health problems, like ms or canser etc etc.. i must admitt i hate it...

Some wrote that nurses is more understanding.. I begg to differ.. Yes my most understanding friend is a nurse, but its mostly here personality. She admitts that being around dying people all the time can make one less ematic than more..

My mother inlaw is a nurse. And others nurses i know, well. They are often better than docs, i will give them that. Not my attension to offend any nurses here. U are probably of the understanding sort..

I wish i could talk about my life openly, and people not feeling bad about it.

[Janey]

Totally understand in this situation and you have my deepest sympathy. There are people around me too who think I have adopted an "ill" or "victim" persona because I've got nothing better to do with my time. How horrible to be so disconnected from your mother? Although I suppose it makes a big difference when you have a great family of your OWN who are there for you and support you.

Like you have said to me in the past on here - you've just got to be around the people who understand and that's what makes it work. Forget about those whose compassion can't reach that far and there'll be a day, hopefully, when they will understand.

Janey