Pots: Friends Who Dont Believe You? Or Just Dont Care?

[spinner]

I got to thinking---with chronic illness there seems to be a handful of faithful friends or family that stick with you. And then theres usually that ONE megafriend who went through a chronic illness, were told they had anxiety at first, and were told by everyone else that they "looked fine". So they actually get it, and they stick to you like glue, take you to the ER when you cant move at 2 am, bring you healthy food, and ask about your last test result for dysautonomia.

Im wondering how youre own percentages break down of the people that you THOUGHT were your friends, but to put it bluntly, by their actions they either seem to not believe you or they really just dont care.

For me, I'll say 75 percent dont care, and 25 percent dont believe it. And Im not attacking the 25 percent because until I went through it, there was a part of me that didnt believe in "chronic fatigue" types, people with "gut" issues, palpitation problems ('theyre just hypochondriacs).............much less a serious neurological or autoimmune disorder.

Whats your percentage break down to, or do you just have much better friends than I do? lol

Well, I've weeded most of those out.......or should I say they weeded themselves out of my life. This includes

family members btw.

[Katybug]

I'm lucky.... all of my family has been on my side. I would say I found out that 25% of my friends were real friends and the other 75% were only "fair weather friends". I'm OK with it...I'd rather know than continue to spend my time and effort on people who don't appreciate it and aren't going to return the favor.

[YolaInBlue]

My closest family believes in my illness, but they all live far away, across the Atlantic. They haven't seen me since I got sick, only hear what I'm going through.

As for my friends, some do, some don't (abot 50/50, I would say) but most of them hardly call me or visit anymore. They are probably afraid that I might ask for a favor, since I don't have any family nearby and I'm mostly homebound. And I guess I am not that much fun to be around now. Whenever I call, they start the conversation by saying how busy they are. Kind of sad. I have only few people left that I can talk to. I don't know if they even make 25%.

[Chaos]

I think this is pretty common for anyone who is sick. I saw the same thing happen when my mom had terminal cancer so I don't think it's limited just to those of us with chronic diseases. Just harder on our friends and family who stick by us as they have no end in sight. LOL I also saw it from "the other side of the bed" when I worked in hospitals and home healthcare for 30 years.

Personally I think part of it comes from people not wanting to admit to their own mortality or having to acknowledge that they too might be susceptible to having something like this happen to them. People like having a sense that they are "in control". (Didn't we all feel like that once upon a time before we were so brutally shown that we weren't?) By having to associate with those of us who have experienced these unexplained, untreatable conditions it makes them confront the fact that we really don't have a lot of control over what happens in our lives. Most people don't want to face that. I know I was always one who was active, exercised, did yoga, ate right, didn't smoke, did all the "right things" to stay healthy and look where I am! Who wants to hang around with someone that shows them that all their hard work doesn't necessarily pay off in good health?

I also think part of it comes from being an impatient and shallow society as a whole. We don't have time for infants, the elderly, the sick, the mentally disabled etc. We focus only on the young, active, healthy and glamorous. If you don't fit that criteria we seem to think you should be pushed aside and left behind, left in institutions for "others" to care for, kept out of sight so you don't offend the young, active, healthy and glamorous.

Like you, I've lost many friends mainly because the things we had in common I'm no longer able to do. That may not be so odd. As I look back over my life, I've had many friends come and go based on whatever activities I was involved in at the time. If you don't interact with people on a regular basis you tend to lose touch and if you no longer have things in common you don't have a lot to discuss.

I am however truly grateful for those true friends who have stood by me and continue to hang in there even though I'm not the person I was when I first got to know them.

[E Soskis]

I would say that between all my friends, family, and co-workers, no one really "gets it". It's not that they don't care - they just don't understand this crazy disease. I have answered questions and explained things over and over but, to no avail. I know that until I experience something first-hand, I don't have a true appreciation for what someone is going through or has gone through. I do know that because of my illness, I try a lot harder to listen to others better - especially when they are telling me a difficulty they are experiencing. So, I don't hold anything against my family, friends, or co-workers - they are nice and they mean well - they are concerned and will attempt to help me in anyway they are able but, I have given-up on anyone actually understanding what is going on with me and fully appreciating the lifestyle-limiting nature of the disease. I am now used to the repetitive questions, the expectations that I should "be normal", and the lack of understanding why I say "no" so often to inane, unsafe requests that would put me down if I tried to respond.

[spinner]

Through experience, its probably best to keep it simple. "I have a neurological disorder and my nervous system cant regulate my vitals".

Short and sweet.

To the above comment, yes people are obsessed with "living life", keeping it fresh, staying young. Ive done a lot of work around

very elderly people and i was very surprised that they NEVER talk about their mortality. They do talk about their latest test and how

to beat some particular ailment. But they dont admit they have few years or months left.

Since getting sick i talk about it with those who understand. Its very matter of fact. "when im gone, such and such". Not that im leaving

any time soon, but nobody has any lock on this planet. We all have an appointment coming up.

I have one particular friend who completely gets it, and we support each other, drive each other around, the ball of wax. Not sure

what i'd do without that one person.

[Lethargic Smiles]

Maybe you would be surprised by who and how many people care. I know I was when I had a fundraiser. People I didn't even think cared or noticed I was ill donated. They often expressed how happy they were to finally be able to do something.

I feel really lucky in that most people I was close to in my life prior to becoming as ill as I am now, "get it". I think a lot about what makes me different than others who seem to have no one. I don't have any answers. It breaks my heart to see people without support because my support system is so important to me. Most of my support system is my family. I haven't had a single member not understand ever since I started my blog on my condition. They all are always telling me to lay down and rest during family functions. My extended in-laws understand too on a basic level. I've always been a quality over quantity type of person when it comes to friendships. I think having such deep rooted relationships has also lead me to be fortunate in people being understanding. My best friend is still my best friend and she is so understanding.

I think the key is education. We need to tell our family and friends what POTS is. We need to explain facts. We also need to let people know how they can support us. Sometimes people just don't know so they stay away. For example, if you have a friend who you always did a sport with, and suddenly you can no longer do said sport, they just may not know how to engage with you.

In answer to your question... I'd say 5% don't understand (believe/see something is wrong, but don't understand POTS) and 95% are supportive and 0% don't care. If someone didn't care how sick I am, I don't think I'd keep them as a friend. Luckily I haven't had this happen, but maybe that also means I don't know what I'd do. I don't expect constant visits. A few phone calls a year to catch up is fine for friends who live far away. However, I cannot imagine keeping someone around who didn't believe my illness is real or as severe as it is.

[AnnHasPots]

In one way, I'm lucky because my family and friends all support me and get how debilitating this disease is.

My best friends nicknamed me "Gimpy" and they are always there to catch me if I fall, and support me when I walk.

They can tell how bad a day is just by looking at me (I have severe bilateral vestibulopathy on top of POTS, so I lose the ability to walk/stand when it's bad).

They see me on good and bad days, so they really get it. I've had to spend parties just lying flat on the kitchen floor, but I always have a friend come and sit by me.

I crack a lot of jokes about it, like when we walked by an ambulance, I was like, "Hey! There's my ride!"

On the other hand, I've faced most of the disbelief from doctors.

They really don't seem to have a clue about this disease, and have little idea how awful it is.

Maybe it's because they only see me on good days?

I once had an ER doctor suggest the dizziness/presyncope was all in my head and prescribe me antidepressants.

That was before I was diagnosed with everything, but I still remember feeling so letdown by the medical establishment.

I'm glad I trusted my gut and pursued testing. Just because you look young and healthy, doesn't mean you are!

[spinner]

Yeah, doctors. I'll tell you one thing, once you tell them you use klonapin (in my case for adrenaline reactions in sleep apnea or for nervous system disturbances, agitation, heat intolerance)..........

they immediately peg you as an anxiety hypochondriac. They can only think one thing: this person has anxiety and thats causing the problem.

They cannot comprehend that you take the med in REACTION to your sickness---in my case "as needed".

One doctor who i wont name but is involved with DA cardio told me "so youre on a tranquilizer"???

But the thing is, i was healthy for 50 years with no breathing problems and no heat intolerance. So suddenly I overnight

started needing tranquilizers? We all know that our bodies are fundamentally different after onset, but they dont

Edited October 16, 2013 by MomtoGiuliana

[AnnHasPots]

I've read that it's common for doctors to misdiagnose POTS patients with anxiety.
I think it's just common for doctors to misdiagnose.

That's why medical errors are the sixth leading cause of death in the US.

I guess that's why it's better to have your friends disbelieve you, rather than your doctors!

[KareBear]

This topic has always bothered me most. I think age and maturity may be a factor for some because I lost ALL my friends ( even very close, best friends, and life long ones) when I became very ill. That was not long after high school though so maybe they were too young to care or understand but even now I still try to reach out to some of them as friends with no response. So for me its 98% dont get it. I have amazing parents that do though so I'm thankful.

[Birdlady]

Karebear,

I had a similar experience. I got sick while in high school, so even back then my friends began pulling away from me because I had to quit marching band and symphonic band. Most of my friends were from those activities. After high school, they wanted nothing to do with me because they went off to college and made new friends. Nowadays I find it hard to make news friends because of POTS. You can't partake in their activities or do the things they like to do (go shopping or whatnot), so any time I've made friends, I've lost touch with them quickly or it's always friends that just keep you are arms length. I'm also 29 and most ppl my age have kids. Since I don't and have no plans to, it's really hard to relate....I've never been much a kid person any way. lol

Thankfully my family has been pretty good, but they are limited with what they can do. My dad and I probably understand each other the best. He has COPD and we have such similar symptoms but they are caused by different things. My sister had brain cancer two times, so she gets it too. My mom is wonderful even though she doesn't have health problems. My brother is supportive as well. My best friend is my husband. We have been through so much together.

[bellgirl]

Wouldn't you prefer to know who your true friends are anyway? I'll admit with an invisible illness, it is even hard for family members to believe you have a problem, but I believe sometimes it was harder on my husband then it was for me, at times. Don't get me wrong...at first, even he thought I was a hypochodriac...because I initially went to all the right doctors, being a nurse, knowing there was something wrong with me, but no one could find anything...but after many years of putting up with all the symptoms, which became progressively worse, my dizziness/vertigo, vomiting, inability to walk at times during vertigo episodes, running into curbs in my car, that had to be fixed, not being able to see properly, etc. Then he finally understood...but friends don't see you on a daily basis, so they don't see you at your worst, but I've had a hand full that do understand, and the others really weren't good friends, anyway. You reach an age, where you begin to cherish your good friends, and don't have time with all the drama of the others, so your friends dwindle, anyway, and that's not a bad thing!! I'm grateful for the true friends I have, family is far and wide, but communication with them is priceless, and I never would have gotten this far without God, either.

[Relax86]

I think a decent portion of my friends love me enough to shake their head and say they believe in POTs when they really think I just lost it. Once actually said "I thought you were only having anxiety about work but when you went back to your old job that you liked and still didn't get better, then I started to think that you were really sick". Essentially, this means to me that most of my circle must think I'm a ball of anxiety but they keep that conversation on the down-low. I finally accepted my POTs diagnosis...it is what it is. I did get better (85-95%), that's something I can live with. It doesn't make POTs better to worry about anyone else.

[kitt]

.

[E Soskis]

How blessed most of you are to have friends and family who "get it" and provide so much assistance and support. My mom understands but, she cannot help due to age and debilitation. It is sobering to realize you need to go to the hospital in the middle of the night and there is absolutely no one upon whom to call to help or for transportation. I too have God and couldn't make it without Him - I guess you could say He actually drives the car in the middle of the night because, I make it to the hospital somehow! I know I'm never alone spiritually but, it would be nice to have a physical presence of someone who cares or is willing to assist.

[spinner]

E Soskis:

Ive been there. My ex wife divorced me----it was a number of problems and i did NOT sign the divorce

papers as i dont believe in it. However, she told other people she didnt think I was really that sick.

Fortunately Cleveland CLinic disagrees.

As you say, Ive driven myself to ER for palpitations, breathing problems. Many of those times I didnt

go in, i just sat outside "waiting it to pass". Sometimes it got worse and i had to go in. My ex wife

got angry for not awakening her, but i did it as to not bother anyone. One night, i left and came

back two hours later and nobody knew.

There is no way to describe to someone else how desperately sick you can feel when the bottom

drops out of your regulated heartbeat, bp, cooling system, respiration. Sure, it SOUNDS like

a panic attack, but i went 50 years without medical issues.

I wish I could be there to help you in the middle of the night like everyone here, but i wonder

if a local church or neighbor would be "on call". Believe me, there are plenty of people

who would help you at all costs at any time. I know this because I'd do it myself if it

were in my power. Sickness has its benefits---it demonstrates to us our mortality while

everyone around is busy much of their life away with trivialities.

It also makes us empathetic to those in need. And thats a good thing.

[E Soskis]

Thanks Spinner - I know you would help if you could. You are indeed correct - the majority of people go through life focusing on trivial issues and fail to see the big picture. The "blessing" of this illness is the realization that "it's not about me" - life is richer and fuller when helping others - I try very hard not to bother others with my needs or burden anyone with having to assist me - it is just unfortunate that the very few times I have actually asked for assistance or help, no one came through because they all were too "busy" - yet, everyone says "call me if you need anything" - that alone causes me to actually think before I repeat trite expressions - if I don't really mean what I say, then why say it!

[katrina13]

That's so tough. I've experienced it, too. I lost most of my friends when I became ill at 20, and have definitely had a complex about friendships since then-- but as I've gotten older, more and more people my age (late 30s) have had to deal with their own health problems, and most become more sympathetic when they've had some personal experience with illness. Imagine how well we'll fit in when we're in our 80s!

[TCP]

I would say that the majority of my family and friends either don't get it or don't really care. I've tried to educate everyone as to what's wrong with me but in truth most people don't understand the complexity of the problems aren't interested or don't care. My last boyfriend's parents for example initially asked me what was wrong with me and I told then in-depth, but thereafter they never asked how I was and expected me to be able to do what any healthy person can do. I gave up or sometimes said what I thought. I had to.

I have one close friend and even she at times questions why I can't do this or that. People forget so easily.

[angelina]

Spinner, very thought provoking and also makes me analyze what kind of friend am I. When I was in my 20's I was that person who ran to everyone's bedside. Unfortunately many of those friends have now passed. I guess that is also part of the change that happens the longer you live with a chronic illness, there are fewer people around. Last year I had a friend who was diagnosed with colon cancer, I couldn't physically go to see her, but I cooked food, called and sent little notes so she knew I was thinking of her. She passed away earlier this year, but her sister wrote me the most beautiful note about how loved and cared for her sister felt. Doing things for others makes me feel good, it is my medicine and helps me make it through another day. I think of the people I can help, and give opportunities to those who WANT to help me. I think I mentioned on another post the moto I learned from a friend of mine, "you won't survive if you don't get rid of the toxic people in your life." If people get it they get it, if they don't, they don't. I don't give much thought to negative things anymore because I am too busy thinking about living and enjoying, regardless of how simple those "joys" have become. I would rather spend all my time on the one person who gets it than thinking about the 30 who don't.

Recently I have found when I am having a down day, I just get up on the Forum and seek out a story or an example where one of "Us" is providing comfort and understanding to another. It inspires me. It inspires me to be a better friend. I hope everyone can take a few moments each day to focus on that "ONE" good thing!

[Becia]

In my family, I was the last kid born, and I was very much an "oops" kid. My parents once told me I was the one along for the ride, but I was also the kid they never had to worry about. Well, they didn't realize I had a drug problem until I admitted myself to rehab to get clean. They didn't know I had shared needles with other addicts. They didn't know I had tried to save a friend who died because of an overdose. They only saw me, who the day after I turned 18, worked hard to provide for the family when she saw her sibling do nothing. They saw the kid who always got up to take dad to work at 3am, only to be at school at 6am for classes, and would often school and work all day, still have to wait hours in the er with her Mom who was sick, and would be picking dad up at midnight, just to start the routine over again the next day.

They only saw me taking care of everyone and everything else... Now that I'm in the position of needing assistance just to stand, I've been dropped like a hot potato by the family who says they care, but yet, never reach out to grab me. And I still end up having to help them... I still have bills I have to pay for the family, I still give my leftovers to my Dad if he drops by, to make sure my mom has something to eat. Never mind half the time I cannot cook for myself, but what I have, I still give to my family.

The friends around me, are now my family. They have picked me up from the floor when I have passed out, they have held my body on the bed and protected my head when I've had seizures just trying to get in the door, they have provided meds to me because I need them to keep going... And they have paid my entire course tuition for something I can hopefully try and do when I get better. Drug me to tests, taken me for surgery, sat by me when I was in ICU, wiped my tears when I break down in anger at my body... They are my family. They've given me a bed when I couldn't stay in my home, earplugs when church service got too loud to tolerate, rides through the countryside when I couldn't stand being in the house anymore.

They are my family now. Their guest room is now my home. This forum is my external friend... You all are my friends. You're wise, special, and awesome. And I'm grateful I found this place when I did.