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~Naomi~

Are Loved Ones Supportive?

Loved Ones Response to Your Illness  

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My significant other is very supportive and is my caretaker. I am hardheaded and do as much as i can and she picks up the slack when i fall short on a regular basis.

My family is also understanding and supportive as well. It helps that i have a neice non blood related who is also a potsy. she is 17 and has a supportive mother but she doesnt put the effort in herself to better her sitch.

I just wish we had more support from Drs in a financial perspective. Its very hard to get better when you really cant afford to see a specialist on a regular basis or get the testing done to more closely dx and better treat the issues.

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My parents are very supportive and taking care of me. They don't want me to push myself because they don't want me to not feel well. Sometimes it's hard bc I need to push a little and my mom doesn't also take me asserting that the easiest.

There is one area I feel the "don't get" is the amount of emotional pain, longing for independence, and how hard is it to be left behind in life. I've had pots for 15 years its the normal way I am to them and thy accept me as that. It's hard for them to grasp that I want things other ways. Sometimes I just want to be left alone and have my own things and my own space because I'm 27. The fact that i want to live on my own or date & married is hard for them to grasp. They take care or me SO well it's like they can't understand why I would want it that way.

Just bc I have pots & eds doesn't mean I don't have a normal brain that has grown into a 20 something woman. That'd be my biggest struggle in the support area.

Whenever I try to describe it my mom gets upset and says I have to choose my attitude, life's not fair. When sometimes I want to get the pain out, to feel it, and have some empathy over the fact that I was dealt junk and its especially hard to watch my brother move on and live life. My mom tells me I shouldn't be jealous of him. Why can't I acknowledge it stinks to be left out & tossed aside?

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This is something Ive been battleing with. Thx for posting it! My spouse is very supportive and very involved however he is a veteran of Iraq and Afghanistan so he is suffering from brain injurys and ptsd and gets very short from the stress. I used to take care of him and now the rolls are reversed and its definatly taken its toll. My mom is the only family I have and she is supportive and understands but she has days where all she wants to do is push me...and tell me awhat I need to do, and if it was her she wouldnt let it limit her. She is very competitive with me and it can be very frustrating to say the least. Shes one of those people thats a "topper" and if you have a stubbed toe her foot is broken...lol

If I manage to take take a shower AND blow dry my hair they always say, "oh looks whos feeling better",...now you can do this chore and that..." if only they knew how many times I had to sit down in the shower to get through it grrrr

Sorry to vent on your post by Ahhhh that felt good to get off my chest....lol

Bananas, I totally get what ur saying, sometimes it would be nice for empathy instead of sympathy, agood listener is hard to find, we dont always need advice just a shoulder....I get so frustrated with the "r u ok's" every 5 minutes around here but when I need to vent or grieve a little they say suck it up it could be worse, BUT i know that and sometimes I need to work through the lingering thoughts of it could be better....argh

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I understnad where all of you are coming from. My mom is an awesome supporter of me and helps me the most. She is very involved, when all this started I was under 18 so she came to every doc appt with me. Now im over 18 and we learned to sets of ears at a doc appt is better than one so she comes with still. Its hard because i feel like im being a burden to her...were going on 9 years of symptoms and a lot of times I needed her to get through the simplest daily tasks. I appreciate her so much and i try to tell her and show her that often but I still feel guilty how often she gives up her own time to help me. She is also good at pushing me though. Helping me with a few things so i can do an important thing. Like helping me cook and get ready so i cam spend my energy getting to class. Its really hard trying to be independent and also needing so much help.

My boyfriend trys really hard to be supportive and caring but its just not the same as my mom and family. Im only 21 and hes 22. I have to cancel plans a lot or stay in rather than go out. he seems to be okay with me having a few bad days in a row but when it hits a week or more I see it making him frustrated and upset. I understand its hard to accept and deal with but its not fair to take it out on me. It also makes keeping the intimate part of the relationship going. We're working on the situation/relationship (were going on 2 yrs) because we see a long future together but at times i feel like pots is the one things pulling us apart. Has anyone had this happen? had pots put a strain on a relationship? What did you do to help it?

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Could you add an option for "I have no family/I am not in touch with my family" to the second question? If this is an anonymous poll, I would also add something to cover partners/families who are downright abusive on the subject. It's sadly common. I don't mean being a bit nasty, though you could add that as a separate comment. I mean actual abuse. I could tell you a number of stories from people I've talked to, but it would get seriously depressing. Let's just say that a number of them would have warranted police involvement.

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Batik- I added your suggestions. Isn't that sad that family members would actually abuse a sick person. :(

K&ajsmom - I have no problem with you venting and anyone else who wants to, feel free! It feels good to get it off your chest.

My experience has been a mixed bag. There are times where I feel certain loved ones are annoyed by the whole thing, but quietly tolerating it. Definitely feel they just don't get how bad it is. There are also supportive moments. Not so much caretaking... I'd like a little more of that.

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Jkoconne- I don't have any real advice, I'm sorry, but it does seem for me that when I go through times where I start to build a friendship canceling once or twice is perfectly accepted but anymore than that wears on people. I haven't figured out how to deal with it. I just end up loosing friends.

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I feel extremely lucky to have a very supportive spouse and family. I think at times my husband can't fully understand, because no one really can unless they have felt it themselves, but I really do feel that he tries his hardest to understand and he tries to be as helpful and accommodating as possible. He certainly has never made me feel like a burden or like I'm inconveniencing him, which is so amazingly helpful to me! My grandma who raised just passed away in August, but she was so wonderful and caring about the whole thing. She couldn't exactly do anything to help because she wasn't in very good health, but she was always so concerned and asking me how I was doing and so happy when things were going well for me. My brother isn't in the area, but he always asks how I am too.

My husband's family is likewise very understanding. My sister in law also happens to be my best friend, so she has been here for me through it all. My mother in law is one of those overly worried mother types, so she has been a little TOO concerned at times lol! The funniest thing is that she is really into hypnotherapy, psychics, past life regression, etc, so she has been after me for two years now to go do a healing session with the famous psychic Sylvia Brown hahaha.

I really feel that having a supportive foundation has been instrumental in my progress through this and my overall mental attitude throughout this whole ordeal.

My heart truly goes out to any who do not receive the amount of support they need and deserve, so big hug to any of you out there!!!

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"Probably thinks it's in my head or that I'm exaggerating"

This one got me. Apparently all those docs who treated me like I was crazy gave me a bit of a complex because even now that I have a positive ttt, a medical diagnosis, and other irrefutable evidence of my debilitating medical condition, I felt a twinge of doubt when I read this answer. My spouse is pretty supportive, but it's ridiculous what some doctors can get away with.

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Hi everyone! Just a little reminder that although this is a closed forum (only members are able to participate), this is the internet which means that everything you write can be read by everyone out there who takes an interest in it! Just thought to remind you

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My husband has totally been supportive and a caretaker in the sense of doing all the shopping and taking me to appointments. I can tell sometimes it is a big load for him to carry, but he has never in 7 years made any negative remark about my "illness".

My parents(and family) don't speak of my "issues". I say it like that because that's the mindset they have on it. I think they think I don't really have anything wrong, just being a hypochondriac or needing attention. When I got a paper copy of the graph from my TTT that showed my b/p going up to 170/110 when standing, I put it on display on my fireplace!!! It was PROOF that something happens to me when I am upright. That's sad that I felt the need to display proof of my POTS. My mom invites me every year for my birthday to go eat lunch at a restaurant. And, every time I tell her thanks, but no thanks, because I can't walk into and sit in the restaurant. That bothers me to no end, as it is totally ignoring my health issues, and then it reeks of, "well, if you want to be normal I'll take you to lunch. If you want to play your "sick game", then you don't get lunch". Okay, I do tend to read into everything a little much. But, in the long run that's how it makes me feel.

Sorry for the rant, it's just my birthday is coming up soon, and this scenario will get played one more time.

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My husband has not been supportive a single bit. He has made it clear before that he thinks I am exaggerating, and that I only say I don't feel well to get out of doing housework or other things I don't want to do. :( It makes me sad. The one person who should be there for me, the one person who could give me a little comfort through it all, doesn't even trust that I am feeling as bad as I explain. He is completely bothered by the fact that I need/want to find a Dr. who can help diagnose and treat me properly. He even fusses about me needing to be on medication. We have the money for it, but he doesn't want to just "blow" money on medicine that I "probably don't need". I have tried having him read more about POTS, and watch the "Changes" POTS video, but he just glances and closes the window. He can't be bothered by any of it. There have been many times that this illness has caused arguments and hurtful words back and fourth between us. Some days I want to to end our marriage so that I don't have to "force" someone to deal with my issues with me, I do feel bad about it. It's tough! :unsure:

My dad on the other hand is very supportive and drives me to keep looking for answers, he can tell when I don't feel well just by talking on the phone with me. He has offered to help me travel/get to a POTS Dr. across the Country. He's great and I am thankful for him, and glad I'm not left to be totally alone through this.

I also have my best friend who believes me and helps me more than she knows by just listening and believing me! :wub:

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Mama_Destiny that is really too bad about your husbands reaction : ( Is he in denial maybe, or he is simply uncaring? I find that because mine symptoms are "mild" to outsiders that I get very little support. My parents have been extremely unsupportive. Even with a diagnosis from the top doc, still nothing. It has caused me to detest my parents to the point of strong dislike. My boyfriend has been very supportive though. So atleast I have that.

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Thank you mama_destiny for saving me the trouble of having to type all that. Your situation is the exact situation I'm going through with my wife, except I just had to sign the separation agreement a few days ago and I now don't know where or how I'm going to live. She asked for the divorce 2 weeks before our 10th anniversary. A week later I was diagnosed with POTS, which explains everything she ever complained about. But she can't accept it and my 3 kids have to suffer for it.

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Like everything else in life, a handful are, and the rest are utterly worthless.

A better question is- has your illness made you a more empathetic person?

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I feel incredibly lucky. I have the best boyfriend in the world. He gets onto me because I do too much around the house, which could be as little as cleaning the kitchen. But he keeps up with the house work and the cooking, and works 60 hours a week. I mowed the lawn a couple weeks ago and treated it (I was having a rockstar day and work in the Turfgrass industry so our lawn is important to me) and I called him after I finished to warn him so he wouldn't be too upset. Needless to say he was, but I did a little bit of cardio which my doctor and therapist liked. My mom has been super supportive too driving down to take me to doctors appointments and help me around the house. Luckily she retired earlier last year before my diagnosis and she really likes coming down to her alma mater.

Now if I could get my doctor to set up a more effective treatment plan I would be super happy......

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My husband is an angel in my eyes ! He reads the signs when I am not well and just takes over the chores and gives me a hug when I need it most!

My son has moved away but visits regularly and calls all the time

My parents were always supportive, my dad passed away some ten years ago I still miss him, my Mum is now 80 and needs minimal support but she is still my confidant and best friend. Without their constant reassurance that beauty is from within I don't believe I would have delt with my alopecia so well

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My parents are sort of supportive, but like many of you have said they get upset or mad when I want to complain. They always say that if all I can see is the negative then I won't ever get healthy again. I keep trying to explain that I need to process, but apparently I want to process too much (I need a weekly venting session). I am seeing a therapist but she didn't know me before so it's very hard for her to understand that my sad looks like other people's happy, I have always been a very happy person but now I feel like a storm cloud is above my head.
I don't have a S.O. Since I'm asexual but I do have a best friend that I have known since we were 5. She hasn't been supportive at all really, she's too obsessed with her own problems and I do care about those but I can't even talk about my illness with her with out getting grumped at that I should be trying harder, or in less meds ect... I love her (as a friend) but it's super frustrating I had to miss her brothers wedding because I had to go to the hospital, I told her that I was having a really bad panic attack , I got myself help, that's all that should matter right? And then she didn't speek to me for a few months and every time I finally got her to talk she would yell at me (I should also say that we live in different countries now and I was ment to fly in for her brothers wedding, and I had found out three days before I had to leave my kitten was only a year old, I was packed I had said my good byes and then boom panic attack along with crushing feelings of depression I felt horrible how could I leave my kitten when she
Helped me so much yet how could I miss my best friends brothers wedding, and I just cracked from all the stress, and got my self to
The hospital straight away ) so after a few months of being yelled at all the time and not wanting to tell her the whole story I finally had to because I could take the abuse anymore. And she didn't believe me, it was grand, and furthermore she was mad as **** that I hadnet told her. One I didn't want to ruin her brothers wedding and two I wasn't emotionally stable enough to tell her.
So long story short I'm sad and my people haven't been helpful at all. And that's not even getting into how my brother has been treating me.
Thanks for reading my vent I hope it made some semblance of sense, but I'm crying right now and it's the middle of the night so it probably doesn't
Mal
And I'm 24

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Hi Mal,

I'm sorry to hear that you feel unsupported. This illness is hard to deal with without support. I'm glad you found this forum. We're here to listen and support you. I know it's not quite the same as having people in "real life" as opposed to cyber space, but, I hope you find some comfort in knowing there are folks here that will listen and can relate to your struggles.

Take care,

Katie

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Mal, So sorry you are having a hard time right now. Many of us have been there, myself included. Please keep reaching out. We care, and hope you will begin feeling better in the coming weeks/months.

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My husband is very supportive, but he does have his times when he gets frustrated. Not necessarily frustrated with me, but with the lack of answers regarding my condition. I am still trying to find a good specialist, so it's very tiring. My dad is very supportive and always offers to go to doctor appointments with me. On the other hand, my mom thinks everything is in my head. She tried to convince me to go to a psychologist because I was "losing my mind." I find this so crazy since she has seen my symptoms first hand. I am just very happy to have a supportive husband that will do extra things for me when I am not feeling well. I can't imagine going through all of this alone.

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I feel that people believe the things that they can see and because they can not see HOW we feel or see what is happening inside our bodies or see just how much we are struggling even when we are pushing it too much. MOST of us do not look as though we are on our death beds or are in a hospital bed with tubes coming out of us. Most people just think we are fine and are using it for an excuse not to do anything. My spouse is supportive, but sometimes it is too much for him too. My daughter just thinks I don't want to ever go or do anything. My brother-in-law thinks " it some fake made up disease that no one has ever heard of ", his words. The rest of my family is so unconcerned that not one of them has ever even looked it up on google to find out what it is or investigated it themselves. I have learned that the support that helps me and people that understand what is going on is you potsie people right here. I've learned more about this condition and that I am not alone right here. You all share what helps and your struggles too, you understand what is happening to me daily.

This website has been and is my hope...

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My mom is amazing, always has been through this :) her mom is as well for me, though my dad and sis not so much. he's nice about it but definitely doesn't make an effort to be kind with his choice of words...even if it's something minor like asking sarcastically if I want to come when he's going somewhere he doesn't want to, when the answer is yes obviously, I would love to be able to leave the house even to do something not fun! or saying "keep feeling better" (meaning feel better soon) when this isn't a "get better soon" situation. ugh just a little rant!

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