Have You Told Family And Friends?

[Racer]

Have you told or talk to your friends, family, everyone, or no one, about your dysautonomia, or about the problems or issues you face, or about your dignoses? If so, what sort of reaction have you recieved?

I have talked to a couple good friends about the issues I am having, and they were generally concerned and supportive. I have only told my mom the essentials, since I dont want her to worry about me.

[boymommy3]

I have a couple of friends who I talk to at length about it, and my mom. She has MS and so many of our symptoms are the same that we relate to each other very well. However, talking about it to others who aren't in my closest circle, so to speak, I find completely exhausting! I try to avoid it if I can.

[ukwildcat]

I have lost many friends due to this illness. On the other hand, many people don't even know I'm sick because they only see me on my best days. You have to pick and choose who to explain illness to. However, many great friends have stuck around and spent the time to understand my illness and go out of their way to include me and check on me. Knowledge is power. The more my family and good friends understood about this illness, the more supportive they have become. Remember this illness is difficult for us but in some ways I think it is more difficult for our loved ones. Husband started going to all doctors appointments with me. This helped him to understand illness and know what it is like with doctors. My mom always wanted me to just will it away. She would say if you just push yourself, you will feel better. I also took her to some doctor appt with me. She got to ask her own questions and then she was also more understanding. She even started researching NCS and Pots on her own. I have a great support group. It is amazing how great and understanding most people are, if you give them a chance. However, these people still get frustrated with me and this illness. Then, I have to understanding of their feelings too.

[Tachy Phlegming]

Aw, ukwildcat, your mom suggested you should "will it" away and your friends are frustrated?

How can you will away "zaburzenia autonomicznego ukladu nerwowego"?

http://forums.dinet.org/index.php?/topic/22672-pots-dysautonomia-around-the-world/

Maybe you need to have it explained to them in ways they know certainly they don't understand, because English doesn't seem to be working too well and they think they have you all figured out.

(And for those of you who thought you wanted to know how to translate it into words friends or family could understand, you might want to stick to English... )

[ukwildcat]

Phlegming just think about when you were first having these symptoms, Im sure you didn't understand them, what was wrong with you, or how to deal with these symptoms. Knowledge was power for you. You had to learn what Pots was, how it affected you, and how to treat or deal with symptoms(the best you can). This illness doesn't just change our lives, it changes the lives of our family and friends too. The more knowledge they have of this illness, the more they can understand what you are going through and why you can't just do things like "will it away". However, even with all my info I still get frustrated with this illness. Therefore, I know it has to frustrate my family even when they are supportive. Due to fact, that someone cant truly understand unless they lived it or had some sort of chronic illness. We as patients have to be understanding of our caregivers, they are traveling this rough road with us and many times it is difficult for them too in different ways. Many times, I wonder if I wasn't living with this illness if I would be as understanding as my family and friends have been? We expect family and friends to be understanding of this illness that we have and don't even really understand. Even most doctors don't understand it.

[ramakentesh]

Yeah id say the only ones that got it were other friends with their own health issues.

Most just dont want to know about it as it brings them down or they say 'oh your dizzy all the time' and thats the end of it.

My only saving grace is that I was a very energetic person and life of the party before I got sick so people saw the difference particularly in my family.

[AussieOI]

Hi Racer,

I have told my family and a few close friends who have been great. My POTS came on after a GallBladder Operation that resulted in gallstones blocking my bile duct and then I got hepatitis and was bedridden for about 2 months. All my friends knew I was sick and were great about it so when the POTS stuff came on I just thought I couldn't go and say I had another illness! I have told my boss and a few co-workers and I just say I have very low blood pressure which I do.

I think it's very much up to the individual how much they want to share, however for me I don't really want to talk about it all the time as there are so many other things I would rather discuss. That's why this forum is good because you can talk about it in an environment where people get it.

I think in time I will probably tell more people but for now I get a lot of support from the family and friends I have told so I don't really feel the need to tell anyone else at the moment.

Aussie

[bizbiz]

I couldn't not tell family and friends, as there was a long period of time that I was so sick I was unable to do anything. I went from being healthy, social and active to sick and housebound. So not only did I have to explain why I couldn't do things anymore, I think people were also curious as to what was happening.

Everyone was supportive...in the begining. Now I feel like people just roll their eyes - "are you still sick?!?", "I'm tired too, I just push through", "but you look so good" etc etc.

I must also admit that sometimes I tell people purely for the fact that I don't want them to think I am stupid. Brain fog is probably my worst symptom, and I would rather them know that I have this illness rather than just being vague!

[Batik]

It's sad that we live in a world where coming out as disabled/ill is comparable to coming out as gay, and so many people feel that they have to put up with being treated badly. I don't put up with people being nasty about my illness any more than I put up with homophobia, and I'm certainly not staying in the closet. As with being LGBT, most people are fine about it, and the few who are unpleasant are people I don't want in my life anyway.

As for how much I tell other people, it's like any other personal issue: it depends on the relationship.

If people start playing games with you, telling you they refuse to believe that you have a diagnosed, recognised illness, trying to force you to do things which are dangerous for you, anything like that, please don't think for an instant that they have the right to do this or that you should accept it. I've seen far too much abuse of that nature occur with invisible disabilities, sadly.

[Relax86]

My closest friends know and are supportive; 1 in particular did tell me she originally thought it was anxiety which is disappointing. I have an annoying family of which I was typically the rock...if I try and talk about MY symptoms then my family just wants to come over the top with theirs...that's my Mom and sister. My husband has been supportive but I suspect he thinks most is anxiety and I'm not out to proof anything to anyone. He also thinks I am 100% better now and doesn't understand why at this point I can't just put last year behind me and move on. I stopped communicating symptoms to him just because the poor guy had to listen to so much crap from Jan 2012 to July 2012...I still have symptoms but I just tolerate them better now. Also, I look really healthy despite feeling not like me anymore so it's just annoying to try and overcome the stigma of not looking sick. Reality is the maintenance it takes for me to stay outta POTs zone is just a daily grind. And not knowing when this thing might return and try and steal my life is my biggest barrier to happiness right now. If I'm walking into walls my hubby just takes over the task that I'm trying to complete, he always carries, and offers to drop my to the door. He's a good egg, he just doesn't get it. Sometimes I think to fully "get" dysautonomia you have to "have" dysautonomia and I wouldn't wish it on anyone