Explaining To Other People...

[Megan]

I'm sure there have been topics posted about this before, but in all honesty searching just sounds exhausting to me right now. My boyfriend and I were talking today about me, and basically about the future. He's worried about life plans not working out because of me being sick. So here's the problem, in a not so short summary... He's very supportive of me and my disorder and understands that it can cause problems with everyday tasks. He's really understanding when it's obvious, aka visible, that I feel like crap. While he knows that symptoms don't always show themselves, he finds it harder to accept that sometimes I honestly can't get out of bed even when I look fine. He was raised in a "suck it up" kind of way; loving but tough love, too. I don't know if this has anything to do with it, but he feels that sometimes I may be exaggerating or using feeling a little crappy as an excuse to stay in bed. He tries to convince himself this isn't the case but he's a very logically based kind of guy, and if he can't see it he has a hard time accepting it. So my question is, does anyone have any tips on things he could read or ways I could explain to him why sometimes even when I look fine I'm definitely not?

Meg

[bellaluna]

I feel your pain, as I go through almost the very same thing with my husband (and basically everyone else in my life- parents, in-laws, friends, co-workers) and I have yet to find a way that truly explains what it is like to be me (or anyone else that suffers from POTS). It's just one of those things that unless you experience it yourself, you just cannot know what it is like.

I will be watching this thread with interest as well!

Mary

[Ernie]

Hi,

There are many common disorders that are invisible like diabetes and epilepsy. People can understand that these people have limitations because the population have been sensatize to these disorders. They know that diabetics need to eat sugar when they have a hypoglycemic attack and many people know that epileptic haveto their head protected when they have an attack.

But these people look normal when they are not having an attack. Its the same with us. We look normal unless we are having a bad day.

So you can compare our disorder with a disorder that your BF knows and help him make links.

[jump]

Hmmm this is something that's always been tricky for me, too. Most of my family is really understanding, but I have one or two friends who get impatient if I suddenly need to sit down or something. I've found that just holding out my wrist and telling them to take my pulse helps -- the definitely thought I was just "lazy" til they had some concrete evidence (like actually feeling my heart rate). For some reason, me just telling them about it or having them read about it didn't do anything. They needed "proof" with their own senses.

But here's something else to think about. Years ago I dated a guy who had a really difficult time with all of this, similar in some ways to your BF - he was very sympathetic and wanted to be helpful, but I could tell he had trouble with the whole fine-one-day-sick-the-next thing. What we came to realize that the problem really was that he resented that I had something that always took precedence, and that he didn't have anything similar. Like if he wanted to go for a hike, if I said I felt sick then that was it, I wasn't going hiking with him and he couldn't really argue. He resented that something was in our lives that was so beyond his control and kept him from doing things he wanted to do (eg, hike with me). He was so bothered by not being able to control this that he took it out by trying to control *me* - with kind of a "tough love" attitude, like maybe if I just tried harder I could accommodate his wishes more. We didn't end up staying together (for reasons unrelated to this), but it did help when we finally realized that THIS was what was really bothering him. Bascially, he was unhappy with how my symptoms were affecting the relationship, and so he felt like if he could just "fix" me or control my symptoms, everything would be ok -- when really it was much more helpful to take the focus OFF my symptoms, and talk instead about how he was feeling/how he was being affected, and what we could do (besides me just "snapping out of it" which wasn't possible) to help him feel better. I have no way of knowing, of course, if your BF if feeling similarly, but I wonder if you had a real heart-to-heart about this if something might come up that ends up being helpful. Try steering the conversation away from your symptoms and his focus on them, and see if you can get him to tell you more of what he's thinking/feeling about all of this. Maybe that will help you know how to tackle it.

[iheartcats]

Ernie's result makes a lot of sense....I never thought to explain it that way.

But I know what you're going through, if that helps. I haven't even tried to explain it to most coworkers, who knows what they think is going on with my life (I actually blurted "It's Not Cancer" to this one guy who was being a bit nosey)!

I think your significant other is trying his best - deep down I think certain men do worry and just don't know how to express it so 'sucking it up' is a way around those emotions. At least that's what I tell myself!

[jolineshope]

Hi...I'm not real good with being able to relay what it is like to have this illness either, but I did find this great site that has a great section on how to describe to others what it is like to live with a debilitating chronic illness. The person who wrote the article suffers from Lupus, but the theory that she uses to describe a typical day in her life to a friend could apply to any one who suffers from a chronic illness, yet looks healthy. It is an amazing piece to read and a great article to print out and give to friends and family members, who "just don't get it". I printed the link, but if it does not work you can find the article at Butyou don'tlooksick.com The article is called "the spoon theory" . I hope you enjoy it and hope it helps you to describe what it is like to be you to your family and friends.

Joline

the spoon theory

[Mary P]

Friends have said, "How are you? and I'll say, "I'm don't feel all that well today." Then they'll say, "But you look great", or ,"You sound great, or, "You'll feel better when the warmer weather comes." I'm not going to put on a sadsack face and voice and walk to show how I really feel.

At the same time I know that no one, (at least in my world, even my doctor), has ever heard of POTS or Orthostatic Hypotension, etc, etc. So, now I say respectfully, "Just pretend that I'm a gift. All you see is the pretty wrapping. You have to remove the wrapping and open the box to see what's inside. Think of me as the box. You can't see what's inside, but I promise you, you wouldn't want to have what's inside me, just like you don't like some gifts you receive.

There is a respectful silence when I say this, but still the same people will make the same remarks again. I in turn repeat the 'gift' analogy and I'm sure that one day these well-meaning folk will begin to understand. I've also begun to print off info on POTS to give to them because I do feel that they really want to try to understand. I want to show them why I can't do the things I once did with them, e.g., go to a movie or to a rug-hooking or yoga class. At least they're showing concern.

Having said all this, I have begun to see some hint of understanding with my closest friends. I hope that they in turn will help me help others understand why my life has taken this 360 degree turn. My family (sisters) still don't want to talk about it and I've stopped being upset about this because the only person this hurt was me.

[sarct]

I think once I got my diagnoses that it took a lot of pressure off of my husband. I can relate to having the guy desperately needing to control and feel bitter about what was wrong with me. I am a stay at home mother and I can't always get my duties done, and he has had to pick up so much of my slack. Often times he has used terms such as we cannot go on living like this, we need to get our lives started already, I don't like this limbo thing we are living....

Since my symptoms have worsened to the point they are now he has accepted that there really is something wrong with me, and that has freed him from the burden of trying to morivate me, and get me going, and trying to get a life going that he feels we should be living. Now he has been given the freedom to accept this life.

The diagnoses has really changed his viewpoint and outlook for our future. I am not incompassitated in my life, but I am burdened and I feel like my life is a serious of stop and goes. One day is great the next is terrible.

Everyday I am more accepting of my limitations. I have learned to stop fighting and trying to make my life something that it will never be. I am no longer living in denial. I have something wrong with me. It's been a bitter pill to swallow, but I do feel good now that I have learned to just accept this. It's been a real growing process.

[deucykub]

Hi, Meg:

What I have done to encourage understanding is learn as much as I can about POTS/dysautonomia and its mechanisms. Then, when I am symptomatic I try to blend in a little of the "why" with the "how" I'm feeling when I talk to my husband. That way he can understand why I look fine but feel so awful.

I also try to relate stories in the news to him and explain how they are similar to what I am going through. Two examples:

1. The Wiggles lead singer/dancer quit the group because of orthostatic intolerance, much like if not exactly POTS. It helps my husband to understand that if someone successful and motivated can be knocked down with this, then I can still be the motivated person I was in spirit and yet struggle to work and do fun activities because of illness.

2. My Dad related a story from the Kennedy Space Center (where he worked until retirement) where a man, harnessed for safety, fell off the Vehicle Assembly Building (the HUGE grey building with the American flag and NASA symbol painted on the side, shown in all the shuttle coverage). When they finally reached the man, dangling about 150 feet off the ground, they found him unconscious, which was not supposed to happen. They later had a volunteer test the harness, and sure enough, he fell unconscious as well. They determined that the harness around his leg was cutting off his blood flow to his brain. I used this story to explain how the blood pooling in POTS reduces blood flow to the brain. It helped him (and my Dad) to have this physical accident related to what is happening (invisible to the outside world) inside of me.

I've learned not to hit him over the head with it... just small doses. Over time he has come to understand and empathize more and more.

[helen.t]

Hi Folks, Yes I identify with all that has been said already on this post. I find the pressure to be well almost unbearable at times especially when you are struggling just to keep upright, never mind carry on a conversation or try explaining how you feel! And yes, I get told relentlessly of 'HOW GOOD' or 'WELL' I am 'LOOKING', which just rubs salt into the gaping wound which is invisible to others most of the time unless they see me losing my balance or walking strangely or getting one of my frequent dizzy spells when I turn my head slightly. My husband too, although usually understanding can make me feel guilty also as my illness holds us back from doing stuff we would normally enjoy together. I know it's not intentional and more out of frustration but it still makes me feel bad. This forum however has been a Godsend to me as it has helped him realise how I am through what others are going through and he reads the posts more often than me because the computer brings on my migraines big time. It has helped him take more interest and he has even forwarded on some You Tube Videos on POTS to friends who have shown an interest but even at that people still think you just have something that can get better in a few weeks.

I even had a Homoeopathic Doctor tell me How Good, Well and Young I looked, and didn't look like I had been ravaged with ill heath for over 26 years. I responded by saying I wished I could swap places with his body for a few hours so that he might have an idea of what I was suffering continually, the only thing is, I woudn't want to swap mine back if it were possible!!!...ha ha!

I am interested in anybody's ways of coping with others as it's difficult enough coming to terms with and accepting chronic illness yourself without having to deal with other people's unacceptance of it and I wish I could deal with it better myself. Everyone here has my best wishes and empathy! Take care all you guys. Lol Helen

[ladyt]

hey everyone..

To cope whit this syndrom is not easy. And the hardest thing for me have been trying to explain to others. for many years i ust didnt talk about it, i did how ever faint all ower the place.

I have been very hard hit whit pots the last couple of years, i try to gett so healthy as i can be. I have outdoor and indor wheelchair. When I use the weelchair people asume that i am not like others, most think i have been in an acident, because i look so healty.

The healty looking curse, its one of the fals things people belive in, that u can se illnes. most of the time u dont. I know terminal ill people, that look healtier then most people. And the curse of having somthing that no one knows that much about. Its a sad thing to say, but this syndrom needs sombody very famose to gett it and be open about it.

I have tryed the spoon theori on a few people, it worked both ways, sreard of some and made another understand. But i have tryed to be open to others the last couple of years. It is the most difucult thing for me. One feel so esy to hurt, and its hard to explain. To the people i show my indoor chair and so understands better, they se the difrens in me from walking to driving around.

I say somthimes to people that standing for me can feels like running very fast, when dehydtated and in warm climat at the same time. and if ust standing feels like a maraton, of cours i gett very tiered. ust that my body can have the maraton feeling ust after very short time.

I would like a good tipp on how to start talking about this thing to my in-laws. we live very close, but i have never talked about it to them. The last couple of mnths have i tryed to find and opening, but no luck. I am and open tabu. every ones know, but no one talkes to me

about it.

i whant to be abel to make people around me understand. The people one have closes need to know to understand.

It also hard when meeting new people, what to say.? and how to say it. I am so much more than a sick woman. When in weelchair, people tend to be scaptical, but to timmid to ask. when not, i often talk around , like what i do for a living (nothing), and how i spend my days.

I gess there is no easy answerd and no way that works in every situation. My boyfriend i am lucky, he understands most of the time. we dont talk much about how it efects our life. i gess we should. i whant to grow old whit him, but i understand if its hard to live whit me.

i gess i have more questions then answers.

But this illnes have made me more sensitive to what is behind the covers, when it comes to others. That ust by looking there is no way to know how that person really feels.

best of luck to u all.. and if u have some advice that would be lovly..

And if i find some i will write..

[wireless]

I think it's best to stop wanting people to understand beyond a basic level. I don't mean to sound harsh or anything, as I have the same problems and really struggle with it. If they really wanted to understand more, then I guess they'd read about other people's experiences with it. For some people, just reading the words, it won't sink in much though, and they would do better with watching the TV clips. People who are close to you should read books for the family members of those with chronic illnesses.

[deucykub]

Another little tip...

When people tell me how "great" I look, I've started saying, "That's the one blessing of this disease. I may feel miserable, but at least I still get to look good!"

We both laugh and move on, and it seems to validate that I am feeling sick without getting defensive.

Just a thought!

[Mary P]

Another little tip...

When people tell me how "great" I look, I've started saying, "That's the one blessing of this disease. I may feel miserable, but at least I still get to look good!"

We both laugh and move on, and it seems to validate that I am feeling sick without getting defensive.

Just a thought!

Deucykub, I absolutely love this response and will surely use it from now on. It's funny, to-the-point and easily understood, without any further explanation needed. Good for you!

Mary