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lorrie
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I have a wonderful husband and he is patient with me and helpful when I have an episode. That is where it kind of stops...if I am not in the middle of a severe black out, he thinks I should feel fine and go on about my business.

Because I don't "look" sick, my friends and family just don't understand why I don't often feel like doing things I used to enjoy. People have made comments about the number of days of work I missed, how I lay around too much, how depressed I am because I don't want to go shopping, and many other comments. I haven't even mentioned not going back to school (I teach) this year and they are saying I just want to go on disability.

It is so frustrating and it begins to get me down. I don't want to feel like I am going to vomit every time I stand up! I don't want to be on disability...I want to work! I plan to go back to school (which starts in a few weeks), but I am afraid I will again miss alot of work.

I printed information for my friends and family but they act like I am just coming up with stuff. They think it is depression and I will get over it.

What are some things you all did to help the people you care about the most to understand that this is a real illness and not just a way to be lazy?

I appreciate any suggestions you have.

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Hi there. I relate to a lot of what you said in your post. I used to teach! I missed a lot of days, too. I ended up resigning because I felt that I was going to end up getting fired because I wasn't able to perform as was expected from a teacher, or even make it in to work more than three days in a row. I went through a long period of time before I came to a diagnosis when I felt like I was just lazy, incompetent, etc. I was down on myself a LOT, telling myself in my head that I was just weak, that I was a pain to be around and that nobody would ever want to be my friend or (continue) dating me because I didn't like to go out, I wasn't fun, energetic, upbeat, full of life, etc. I asked myself impossible questions. Why can't I just handle things the way other people do? Why do I let the stress get to me? Why do I keep getting sick? Why am I so weak?

I've learned that the most important thing to do is to treat yourself with as much kindness, respect, forgiveness and love that you can possibly muster, and other people will hopefully treat you the same. Easier said than done, I know. Many of us have learned to take a back seat to others, and not to bother anyone with our disability and limitations. But sometimes you gotta take up for yourself. Not in a mean way, or from a place of anger, but with the expectation that those who love us want to take care of us and want us to speak up to take care of ourselves. Why shouldn't I ask my husband to go to the refrigerator and fix me a sandwich? He loves me! :o Thanks, sweetie! - Be positive about it.

Remind yourself often of your talents, your abilities, your strengths. Since your body is weak/disabled, spend as much time as you possibly can tapping into your SPIRIT, and engaging with your true honest soul. I hope I'm not stepping on your spiritual/religions/non-religious toes with that one, but it's helped me.

I think giving out information has been a great thing for you to do. Now all you can do is let your friends/family/etc. process that information, accept it, or not accept it, and make whatever decisions about you or the way that they want to treat you that they can. Your job is to continue to treat yourself with respect and love, not matter what they do/say.

One of my favorite quotes is, "No one can make you feel inferior without your consent." And darn it I can't remember who said it, but there you go.

Good luck,

Amber

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A while back i read about the spoon theorie in one post. When I read through it, it really touched me, because that is exactly how i feel. Now I often use this theorie, if i have to explain to somebody how i feel. Hope it helps you as well.

Have a look at:

http://www.butyoudontlooksick.com/the_spoon_theory/

all the best for you

carinara

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Thanks for the links. The spoon theory is neat, but not sure it will help some of the people I am dealing with.

Jump had a good point and is what I have found to be true too...when you show people an article about POTS, they immediately say "well, you aren't that sick"...

What I hate is feeling like I am trying to convince others that I am sick at the same time I am trying not to be sick. I have never been a lazy person and resent getting that label.

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Guest tearose

What turtlefairy said is so well put!

We should not allow ourself to be led to the inferior feeling place. That is the hardest when we are in a relapsed vulnerable and weak place. This is when I get into trouble. When I am feeling well, I think better and more positive and clearer. When I feel horrible and have no stamina, I can be "made" to feel bad because I start to question myself. Not good. I take comfort in forgiving myself for being human and open minded. Then I move forward again.

I have lost some friends and gained new ones on this journey. I have some family that just will never "get it". Sadly, when my niece was recently diagnosed with POTS, my sister finally started to become "enlightened".

When I finally came to terms with my condition being "forever", I remember going out of my way to meet with friends for lunch, one on one to talk with them. I wanted to reassure them I was emotionally dealing fine and continued struggling physically, and to ask if I was a burden to them. I did not want them to feel obliged to be my friend if I was a drain. I wanted to free them of me if they needed. I also made room in my life for new people and it was a big help.

We can never really know what "other people think" nor should we care. We must be true to our self and our divine purpose on earth. There is a learning curve for our friends and our family and we need to allow them that chance to learn and talk with us. The truth always comes out and true friends and loving family also come out!

best regards,

tearose

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Guest Sandy Sims

Boy do I hear this one!

I AM lucky--my hubby understands.

And I've managed to convince a few others--who have seen me take my BP when it's on the floor and watched me shake all over like a mixmaster.

But I DO feel for you on this one--I also have family and friends who don't "get it." My mother is the worst. So I just have to limit my contact with people who are bad mojo for me. Then it's very lonesome-thus this group.

Another idea might be to seek out a good shrink if you can handle the idea of it. Someone who would read and understand info given to them about this--and to talk to who might have some ideas as to how to explain this to your family--or even be able to put together a family session to help.

I've seen one who was really helpful--another who branded me a patient who would "require too much care." Like with all the rest, it's just a matter of finding the right doctor--which for this is often not easy.

Hope this helps!

Sandy

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I think in a way I was lucky that my symptoms were so severe, it was obvious to most close family that I was severely ill. There are still people who have "their own theories" about my symptoms. That's so annoying. I just block it out. If they don't WANT to understand, maybe they are not ready psychologically. THey're in denial or whatever. When they talk to me about it, however, I give them concrete reasons why I cannot do certain things.

My father is one who had a hard time understanding my illness. I still have to re-explain to him what it is. It's been YEARS. But he cannot really accept that it's not changing much. Underneath the frustration that I feel with him, I also understand that he simply loves me too much to admit that I am going to suffer from this for many years.

To get through to people like my father, who just have a hard time understanding it all, I use the phrase, "irreversable Nerve Damage". That's simple enough. I explain that medication can treat the symptoms but not heal the origin. For solution-driven people, like you know the ones who are always suggesting bogus miracle cures, I use the phrase "Cannot Be Fixed" and then repeat "Irreversable Nerve Damage".

For people who tell me that I'm negative (becuase I accept my illness), and lecture that I "must think positive in order to get better", I tell them, "Would you ask me to re-grow my arm if it had been chopped off? You can't see my nerves, but they're damaged, and they cannot grow back."

If all else fails, and I'm talking about those extremely persistent people who just can't stand it that you cannot be fixed, I say, "I'm doing the best I can" and walk away. Or I say, "Can we please focus on the things I CAN do, rather than on my disease?" That usually shuts them up. For a while.

Of course, I had to work through my own denial and feelings about being perminently ill before I was strong enough emotionally to discuss this with those kinds of family members.

It helped some of them to see others who are suffering from similar symptoms, like on YouTube.

It's a process of acceptance for all of us and those connected meaningfully to us. It doesn't happen in a day or a year. It's ongoing.

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For me, the hardest part of POTS is dealing with my friends. My family is good--both my sister and brother get migraines--so I guess I'm lucky about that. But my friends are a different story. The hardest part for me is that most of my friends say nothing about my illness. And they will tell me to stop complaining if I try to explain anything to them. I have one great friend who tries to make me feel better and I am learning to talk to her and say the very minimum to the rest of my friends. All I can really say is my illness helps me figure out who is a good friend.

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Hi,

I (along with many others here) have dealt with the same problems. I have often told people that if I had cancer or something like that, people would understand bc they can put their finger on something like cancer. POTS and other dysautonamia problems are almost invisible bc on the outside we look fine (unless we're sheet white and about to pass out! lol)

When I was first diagnosed, I had a hard time coming to grips with what POTS was. I was kinda like you (I read some of your other blogs) about really not believing that POTS was the right diagnosis bc I had been through so many other tests. So I had to first come to terms with it myself (which I am still working on) and then explain to others the best I could. Now that didn't always do the trick bc there are some people who, no matter how much you try to explain, they are going to have their own ideas. The biggest thing I have learned over the past 6-8 months is I would rather spend my energy (or what's left of it) figuring out how to feel better than trying to persuade others to believe me that I really am sick. I've had close friends treat me like i'm crazy and depressed. It really hurt but I can't change their minds so I have to move on. Just know you're not the only one struggling with this same exact thing... I always did think it was terrible that not only do we have to struggle physically but we have to struggle emotionally too sometimes... I'll be praying for ya!

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Thank you all so much!! Why is it that we, as humans, feel better knowing others are going through the same thing? This disorder can make you feel so isolated and frustrated. I'm taking the advice to just give them the information and not worry over what they do with it. I have to focus on me!!

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I can relate to all of this so much!!! And I haven't come up with much that really helps...

For so long I tried not to talk about it too much when I wasn't feeling well (I'm fairly functional most of the time, I just FEEL really sick). In a lot of ways I'm kicking myself for this, because now my friends are really baffled by the fact that I keep talking about this syndrome -- because they didn't really know I wasn't feeling well in the first place, you know? So now if I need to sit and rest, they definitely think I'm just being lazy. Or that I'm "out of shape" which is hilarious to me, because with POTS, I've pretty much given up on ever being "in shape" in the conventional sense of the term!! ;)

I really related to dreading people's oh so helpful suggestions-for-a-cure. My mother recently told me that she read that drinking water makes you thirsty, so maybe I'm actually just making myself thirsty by drinking so much and I'd be better off if I just had self-control and stopped drinking. Never mind that if I restrict my drinking I either pass out or get a migraine....

Once a friend was suggesting that maybe this was all in my head and I told her about how people used to believe cancer was a mental issue, too. Which is true -- it was formerly believed that cancer was caused by people retaining anger, and that really angry people who didn't "let it out" would develop cancer. Now, of course, we know that's silly. Telling my friend that kind of shut her up -- and helped her realize that just because we don't currently know all the medical science behind a problem doesn't mean it isn't medical; it just means medical science is an imperfect one.

Sometimes when I get really frustrated by my friends' and familys' lack of understanding I just write about it. I spent twenty minutes just writing out all my complaints and how upset I am that they're not more empathetic. It's a slightly lonely way of dealing with it, but I really do feel better afterward. And I'm hoping that with time more of the people in my life will become more understanding.

In the meantime it's nice to be understood here!!

jump

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I forgot to mention my most potent tactic. For people who really, really don't get it, and they think I'm lazy and not "pulling my load" around the house or whatever, I give them a demonstration.

For example, my grandmother has memory problems and when we were both having an extended visit at my mother's house, she was frequently saying, "Why isn't Masumeh doing this with us? Should she be helping?" etc. One time we were alone in the house and I was studying for final exams. She interrupted my studies to ask me to get something for her from downstairs. I knew that I would most likely faint if I got up. So I just said, "Ok." And I got about ten feet away and fainted and had siezure like symptoms for about an hour. SHe needed to see that. She didn't forget it, even though she has Alziemers. She still has a very supportive attitude about my POTS after that.

I guess we all have our ways of coping and teaching awareness when we can.

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Inspired by hearing "I hope you feel better" today.

Warning: This is snarky.

I don't have a cold. When I feel okay one minute, and not-okay the next, it's not because I'm "coming down with something." I am permenantly down-with-something, called POTS, a condition that only lets me live a fraction of the life that I used to, and an even smaller fraction of the life that I had planned for myself.

In fact, that's a funny thing, plans. Because not only to I have to face losing larger plans for my future, like having an active, energetic, vibrant life, maybe even taking up an extreme sport, but I also, many times, have to give up plans for my weekend, like, say, going to a movie. That's frustrating!

Speaking of frustrating, I'm very frustrated trying to manage my own illness, at the same time trying to manage how I come across to people, not wanting to appear lazy or dull. I'm frustrated trying to put my strange symptoms into words so that others truly get it.

But I'm doing the best I can, and I know you are too.

By the way, thanks. I hope I feel better too.

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Just to share a specific experience...

My dad is crazy. We've never had a good relationship because he was abusive toward my mom, so my mom took me and left as soon as she could.

Lately, though, he has been helping me financially, which I really don't like. It makes me so anxious/uncomfortable asking him for money. I want to be independent, but I'm trying to consider this back pay for missed child support payments.

Anyhoot, he's getting low on cash and really high on the point of me getting back to work, getting "back on my feet," (ironic, that phrase, right?) and, mainly, not reliant on him anymore. He is clueless as to the nature of this illness and the impact that it has on my life. He feels the same way about my anxiety and depression, which I have suffered for years.

He makes ignorant statements like "It's probably takin' all them medicines that's the problem" and, just the other day, this gem: "Well, you know, sometimes you have to stand even when you're, you know, sitting."

??? I have no idea what that one means. Was it a metaphor? huh? what? is he trying to inspire me? I don't know.

He tries to be supportive the best way he can, but he just doesn't understand. He doesn't get that I am pretty much out-of-commission, and I don't know how, like many of you, to get him to get it.

I know that he's struggling with money, too, but when he questions my medication, deciding which ones are important enough for him to pay for, well, that just makes me want to scream.

So, I still stick to the advice I gave in my first post for dealing with friends and family in general, but I just wanted to share my struggle as well.

Thanks for the space to vent,

Amber

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I actually asked my POTS doctor today if he had any suggestions on helping others understand and he just shook his head and smiled. He said "If I could answer that, I could stop working on the money I could make." Then, he did tell me that this is a question he gets often from his patients and that he would be glad to talk to any of my family if that would help. He also gave me some printed information that I can copy and give them. I was impressed that he didn't just shrug this off, but took a little time to discuss it with me.

He also told me to never let others doubt myself. He said I know better than anyone how I am feeling and if they don't understand, it is their problem. He said I should focus on helping my husband and daughter understand that there will be days I will need to rest and they will have to pull more of the load. Since they are the ones most affected by this, I agree with the doctor. They are the only ones who really need to understand fully.

I pulled this site up and asked my husband to look over the information this evening. He came to me after about an hour of reading and searching and hugged me up tight and kissed my forehead and told me he was sorry. Of course, I cried...at last, he is beginning to "get it". Bless his heart, he fixed dinner and got my daughter in bed for me. It was wonderful to be able to lay on the couch and hear them laughing and talking in the other room.

This probably seems like a really small thing, but believe me, it is huge at my house. He is a great guy and helps out some, but tonight the atmosphere was much more relaxing and the stress of me feeling guilty for needing to rest was gone. He even sat on the couch with me after she was in bed and asked about my doctor's appointment and really listened this time.

I knew you all were great for me...who knew this very site was also going to make such a difference in a problem I have struggled with for so long....thanks to all of you!! I love this forum!!

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