Dealing With Tryin To Explain.

[Linj10]

I'm a young 23. I should be able to go through a day without a nap or a headache. I should not have crazy mood swings. I should be able to go out with friends and drink and have a good time and be able to keep up with them. But I can't.

I can't deal with the stress from a fight inside the girl group or drinking alcohol without falling out and the sad but factual truth is I have to take a daily nap like a 6 year old.

My friends do not understand. I think it is because I do not know how to explain. To them I appear as having excuses or being a bore or just plan lazy. The symptoms stress brings are an "attention getter" and a way to not deal with life in their eyes.

They do not Understand the chest pains and headaches. The mood swings or instability. My family is the same way. I just do not know how to shed light on my situation or make them see I'm sick all because....

I DO NOT LOOK SICK

[Monstrosity]

It can be very frustrating. Those people just dont know what its like to deal with something that cant be seen. I feel for ya. I wish I could give you some advice but just like this disorder varies from person to person so does dealing with people in your life. As far as the drinking and night life goes I was fortunate/unfortunate to have had plenty of that. For the most part all that ever did was lead to bad choices and problems.

[jpjd59]

My 23 year old daughter feels the same way you do. Her friends have stopped asking her to go out with them because she has had to cancel plans so many times because she is not feeling well because of POTS. It is not fair that you should have to be going through this at such a prime part of your life but hopefully, with time, you will start to feel better.

Hang in there!!!!

[Christy_D]

Print out 'The Spoon Theory' and ask your friends to read it. Maybe it will give them more insight.

Christy

[Guest Alex]

Linj,

I'm so sorry to hear about your struggles. It's tough having to deal with the health issues alone... And then when those around can't "get it" "because you don't look sick" it's even more frustrating.

I wish I knew what kind of advice to give you when it comes to explaining your situation to your family and friends, but I don't.

I realize you are at the age where you want to enjoy life to its fullest, you want to go out, be with your friends, not having to worry about aches and pains, and all the other symptoms we have to deal with. It's tough, but i'm sure that with determination from your side, and maybe help from knowledgeable and compassionate doctors you can get back to normal.

Take a nap if you have to, and don't feel bad about it, more than that, don't feel that you have to justify yourself in front of anyone. It's your own body, your own health and you have to do what you know it's best for you.

You can always find support here on this forum, I know I have - ask questions, vent off (it's actually healthy to do so every now and then), read other people's stories, and try, TRY - as hard as it may sound - to stay positive. One day this will be behind you - hopefully soon.

chrystyd gave you an excellent idea - the spoon theory might be an eye opener for a lot of people.

Hang in there and keep us posted.

Hugs,

Alex

[xxkishaxx]

Linj, I know exactly what you're going through. My friends just don't understand, and they rarely ask me to go anywhere. Try to the spoon theory as well. I have tried to explain it and my situation with my friends, but some just don't get it. They say they're just as tired, etc etc.

[Katybug]

I agree that the letting them read "The Spoon Theory" would be good. Just google it and it ill come up for you.

I also recently found another way to explain it to my adult friends that they seem to understand. I have started telling them it's like Weight Watchers but instead of having to count points for what I eat, I have to count points for the energy I use. If I use too many energy points in the morning, then I have no points for dinner or a drink with friends. If I meet for lunch, that is likely all my points for the day. If I vacuum the main floor of my home, that is definitely all my points for the day.

I am blessed in that my really true friends (and believe me this syndrome helped me figure out who they are) have been understanding. I have found other ways to hang out with them and they have made the changes willingly. For example, we might just have a quick pizza night at my house where I order pizza and a few of my friends come over after work for dinner. We talk over our pizza and soda and then they go home...it feeds them dinner and doesn't take too much of a toll on me but maintains our friendship. You could even do a movie with it if you do a weekend (and you could do it in the middle of the day on a weekend...lunch and a movie) so they can still go out at night if they like the nightlife and you can't manage. We also meet for coffee, brunch, or early lunch at places close to my house because my best hours tend to be from 10 am - 2 pm. I try to find new, interesting places for us to try that aren't too expensive (we are all on tight budgets these days). I try to walk my dog each day and often we go to a neighborhod park. Since some of my friends are dog lovers, they come with me and we will take a bite to eat with us and have an impromptu picnic.

My point is, I was isolated for a while, too, because happy hour just was not safe for me anymore. But, when I decided I wanted my friends, I got creative and just said to them, I can't drive farther than Place "X" but would you like to meet for coffee there? I just invite them to do new things I think up and so far, they have been up for it. I was the one that had to be creative because I was the one that knew what I could and couldn't do. I was so used to doing the "usual" things that it took me a while to realize there were alternatives that would allow me to maintain my friendships.

[Linj10]

Thanks for all the support!

It does not help that on top of all this I'm trying to finish nursing school and plan a wedding.

One of my good friends disowned me yesterday because I told her that I did not have room and that since it was Christian ceremony and she is an avid nonbeliever I wouldn't feel comfortable. She said I had been sketchy lately and called me a low and disgusting person for using my health as an excuse to avoid hanging or out or for why I can't stress.

I ultimately got so upset and stressed that I ha a panic attack, I was trembling, my heart rate was rediculous and I eventually passed out. Her response, you may be sick but only in the head.

It is so frusterating but I appreciate the support.

[Elfie]

Linj-- that is really tough. I can't imagine trying to do all you are doing. I was in the position of being a full-time student trying to finish my degree, maintain friendships and a relationship, plan a wedding, and deal with POTS. I can't say I have good advice, since I wasn't able to do it. I did finish my degree with a lot of difficulty (it was worth it) but I eventually couldn't live up to people's expectations and most of the demanding relationships went kaput and I got very ill. I've had to take a different approach.

[CC101]

Katybug, I really enjoyed your creative response and thank you for the tips! =)

Linj - You have voiced my same very frustrations. I am 22, will be 23 in August and this all started when I was around 18-20. So needless to say, I know Exactly how you feel and the overwhelming guilt, frustration, hurt, and anxiety that builds up while we are down is a horrible place to be. I am also still dealing with this, but as Katybug said, this is the time in which you will see who your true friends are. The best thing we can do is continuously educate those around us on our condition until we are blue in the face. I have found this difficult to do, but practice makes perfect. I created an album on my facebook page filled with expressive and self-explanatory pictures along with links to informative websites, including the infamous spoon theory. Print out several copies of articles, such as the spoon theory, and carry them around with you to hand out to those who need to learn and that are willing to listen. Our condition is a lonely one, but we must fight through and be our own advocates. We are the voices that can make POTS more known and ultimately, the ones who will lead to a cure. And always know, we are your family here and will be always be there for you. =)