What To Say

[tiredalot]

Hello everyone, Just recently was diagnosed with POTS and having to assimilate lots of info quickly. I'm new here and was wondering if anyone had any advice for how to explain POTS to different people.

Here's my dilemma.

1) For close friends - I'm not having a difficulty explaining, even though they've never heard of POTS with my dearest friends I can share some of the details but more importantly, the struggles of trying to coming to terms with finally knowing what is wrong etc.

2) Close acquaintances - in a business sense - what do you say to those who you really don't want to give all the details to, but those let's say that you may have partnered with in the past on a business project. Since I don't "look" sick, they see me and think everthing's fine which it's not. I have to make some adjustments in my work schedule and can't go 100 miles an hour like I used to. When people say things like "sure hope you've gotten everything taken care of and are feeling better", how can I respond when I need some people to know that things will be different, but don't want to explain all the details?

3) Regular friends - neighbors etc.... - those who may know that I've been traveling for treatment and ask how I'm doing etc....

Has anyone else struggled with this before and how did you handle it?

[Mrs. Burschman]

Hi Always Hope!

Welcome to the board! At the same time, we're all sorry you're here, but you've come to a good place!

1. Close friends: There are helpful descriptions and/or brochures on the site. It might be helpful to print out a few copies or direct them to this site to learn more. I sent the link for DINET to a couple friends so they could get a better idea of what was going on. As you learn more, it should get easier, too.

2. Close acquaintances: This is harder! I'm reading a good book called "Sick and Tired of Feeling Sick and Tired" which might help you also. I was just diagnosed too, so I'm going through some of the same issues. I've found maybe the best explanation for my particular brand of POTS is something like, "I have a chronic condition in which my body doesn't regulate itself properly. It causes a wide variety of odd symptoms. Sometimes they get in the way of what I'm trying to do, and I have to rest more than I used to, etc." Something like that. Enough information so they get the general idea without comprimising your privacy.

3. Regular freinds: Maybe a halfway point between the other suggestions!

I think what's right for me might be different than what works for someone else or for you. You will figure out how best to deal with it. And if you're having trouble, you know where to come!

[thejohnsongang]

I agree. I had a very hard time explaining to all my family and friends about my illness. I always got the "But you don't look sick" scenario from a lot of them. I printed out info on POTS/NMH and asked them to read it. I sat and talked for hours with some of them. The few that didn't get it, I had take a walk with me...at my pace and they slowly began to understand. I kept only a few friends as most wanted to stay at their own pace or never understood what I was going through. I cherish the one's I have kept and appreciate their understanding of my condition. It's hard for healthy people to slow to our pace, but the one's that due are true friends.

Like Ms. Burschman said, as you learn more about your illness it becomes easier to talk to others about and what works for one person does not always work for another person.

I glad you found us and hope you find the answers you need. We have all been there and understand how challenging it can be.

[shannon]

Good question! I have to admit that I have not quite figured out the best ways to bring up POTS either. I've really been working on learning to trust myself and know my limitations ... and to assert my needs.

As far as explaining POTS to acquaintances, I usually say something like:

"The autonomic nervous system controls all of those things you don't think about that are necessary for daily functioning (for instance, heart rate, blood pressure, and digestion...). For me, this nervous system is dysfunctional, which means I have lots of chronic symptoms that are seemingly unrelated. I usually look healthy, but that doesn't always mean that I feel well."

Still, I know that it can be very awkward to bring this up to acquaintances. I still am trying to figure out how to explain POTS in a brief and clear way. With close friends, I try to be open with them and let them know when I don't feel well so that they can understand my limitations and support me. I am lucky to have one good friend who actually understands POTS. With regular friends, I pretty much give the same spiel as I do with acquaintances.

Take care!

Shannon

[Kitsakatsa]

I consider this area a sort of battlefield because I and it sounds like so many others come back from it at the end of the day with frustration and sometimes a little injured!

Here's how I try and handle it:

#1 people: Brace yourself for this category. They are the most likely to distance themselves if they don't understand. With this group, I talk about the illness if they ask and then try not to be hurt if they never ask. I use this group to get away from the illness- that is what I tell myself. Anyway, I am pretty honest and this is the group that gets the plans cancelled sometimes, so they need to know that you are trying and you value them.

#2 people: Is this the co-worker category? I generally tell them the title- then they laugh because it is so long. Then I tell them that it makes you feel like you have heat stroke and stomach flu every day (or pick your own symptoms/words), but everybody pretty much knows what that feels like. Then I tell them of something that I'm thankful for (like I have a good doctor, great parents etc) and so they know you are trying to be brave. I never tell them more than 2 symptoms. They generally have a bunch of questions and I answer those honestly- but these people for me are my daily saviors (co-workers) and so I treat them carefully.

#3 people: Same as the #2 people- these are like neighbors right?

Anyway, I try and build a support network by letting people know without overwhelming them. Its a tricky balance.

[lloppyllama]

Hello, Welcome, sorry you have reason to be here, but none the less were glad you found us!

Its hard having to be sick all the time, and deal with others not understanding the stuggles you go through on a daily basis. Some days it will be harder than others to deal with people who "just dont get it" but hopefully in time you can figure out how to deal with it, as I'm sure you will

You have gotten some excellent advise from the others here so i really dont think i have anything to add, but again welcome!

Have a wonderful day!

Mary

[MightyMouse]

Try searching old threads for information too--many prior posts address these very issues. There's also a few posts about "spoons" and an analogy that might help you in telling people about what it's like to have an invisible illness. The search feature is located on the topmost navigation bar, right side, second in line.

Nina

[thejohnsongang]

I had never heard of the "spoon theory until earlier today. Someone suggested a website to me for FM support at www.butyoudontlooksick.com. It was a wonderful way to get your friends to understand. I checked the site and the letter is copyrighted, but posted a link to add to your message if you wanted to share it with anyone. So here it is:

www.butyoudontlooksick.com/the_spoon_theory

It sure does make you realize that every spoon in your life is important. Even the simple ones.

Good luck with your circle and I hope you can find support in them.

[tiredalot]

Hello Everyone, thanks for all the great tips and warm welcome. Your support has helped already and I'm grateful for all the replies.

[Eillyre]

Welcome Always Hope!

I'm in the recovery stages at this point -- just started working part-time this summer and anticipate continuing through the fall -- but still have to explain my limitations to others. You've had some great responses to your questions already, so I won't add a lot.

1) Close friends & family: I always start off with the full name Postural Orthostatic Tachycardia Syndrome because it sounds complicated and serious, then give it a simplified explanation.

"...which basically means that when I sit or stand up, my blood pressure plummets while my heart rate skyrockets, causing me to faint. Most people's bodies have no trouble compensating for sitting and standing because their autonomic nervous system (the nervous sytem that regulates HR and BP among other things) makes any necessary adjustments automatically. For some reason, my autonomic nervous system does not communicate properly -- researchers are still trying to discover why. On top of that, I have Chronic Fatigue Syndrome..." etc. I always throw the Mayo name in, too, because it always impresses people that this is indeed a serious problem.

I try not to go to heavily into the medical details unless pressed to do so. As I see it, I need to briefly make them understand that:

a) these are real, recognized MEDICAL conditions

aa) these conditions are of uncertain origin and are still in the research stages, so there is no miracle cure

c) these are chronic conditions that I have and and will battle for several years

d) prognosis is unpredictable so we rejoice over every little step forward

e) what the most disabling symptoms are and how they limit me

f) how I have needed to change my daily living to function

g) what steps we are taking to encourage long-term improvement

h) the latest big step forward I made (whether it was being able to sit up for a meal, walk to the end of the driveway, etc.)

It looks like a lot to cover, but in reality, you become very adept at making concise yet effective explanations once you get enough experience at it. A word to the wise...don't wear out their attention span. If they press you for more information, by all means give it to them, but otherwise keep it brief. They will not take you seriously if they are bored by the conversation. Watch their body language.

I just read the spoon theory mentioned in some of the posts above and think it's fantastic for close friends and relatives. I've been using a bank account analogy that operates along the same lines as the spoons and people respond very well to it.

I think point "h" above is very important, too. Not only does it show people that I'm not depressed, but it helps them understand how seemingly little things are huge accomplishments for me and make my listeners more thankful for the things they take for granted (e.g. taking the mail out of the mailbox).

2) close acquaintances at work: Yes, you usually don't go into as much detail with them. If they mention that they "sure hope you've gotten everything taken care of and hope you're feeling better" I'd reply with something along the lines of:

"Thank you. We actually haven't been able to get to the bottom of it yet. Because this is a chronic illness still in the research stages, there's no known cure. My doctor's and I are still working on coming up with treatment options, but until we find something really effective, I'm not going to be able to work at the same pace as I used to. But by making x, y, z changes, I'm able to function. I'm just thankful to be able to come to work each day; there are a lot of people with this same condition who are too sick to leave home."

If they ask for more details, go ahead and answer them honestly. This is no time to play the stoic sufferer...people will not understand what you struggle with if you do not disclose a struggle in the first place.

When people have brought up the "but you look fine" comment to me, I usually answer something along the lines of:

"Thank you (little laugh). I must admit I'm glad to at least look like a somewhat normal person even if my blood pressure is pretty nutty. My family can usually tell, though. Certainly they know about the adjustments I've had to make in daily living, but they can also see it in my eyes."

3) Regular friends and neighbours: Answer them honestly. Again, don't talk past their attention span -- that's like taking bows on stage after the applause is over -- but take advantage of the opportunity to educate them and help them understand what you're dealing with. If they ask how your trip to Mayo went or if the testing you did at the hospital was helpful, tell them.

"Thank you for asking. I'm feeling pretty worn out after the travelling and testing, but it was a helpful trip. They confirmed the original diagnosis and were able to give me more information about it. Since it is still in the research stages, there isn't a known cure for it yet, so my doctors and I will have to experiment with various treatment options and hopefully come up with a combination that works."

It's a difficult stage to be in, Always Hope, when you (sort of) know what's wrong and are trying to explain a diagnosis that most doctors haven't even heard of to friends and co-workers. I used to dread it, quite honestly, and preferred to avoid talking to people rather than try to explain this mystery illness to them. You'll get used to it, though. I take encouragement in the fact that each time someone asks, I have the opportunity to educate others and hopefully pave the way for better awareness/sympathy for POTSies and PWCs in the future. Makes me feel like a pioneer helping to change the world.

Feel free to PM me if you want.

Angela

[JenniferInOhio]

I never really know what to say. I feel like people don't really want to know, but maybe that's just my perception.

[yogini]

I always say I have a rare condition which basically causes my blood pressure to be too low and my heart beats fast all the time to compensate. I get a lot of crazy symptoms from it- the worst ones are fatigue and headaches since my heart is beating too fast and I need to rest a lot. That usually makes sense to people. And when related stories hit the news (like when the Wiggle got POTS), I forward the article and explain it is about my condition.

My immediate family members and a few of my good friends have read a lot about POTS. For the rest of the people I think the above explanation is enough. I agree with Jennifer that people don't want to hear a whole long story and medical terminology tends to scare people away.