I Feel Guilty For Being Sick?? No, Not Anymore. I Promise Myself.

[blueskies]

My husband said to me the other day, "you never get out of that chair and you never exercise."

Not true. But I do spend a lot of time in this chair with my feet elevated and I do exercise although not as much at the moment as I was.

But the problem is he didn't say, "Is your pots stuff worse?" Which is, I feel, the obvious question.

My grown up daughter who has a baby of her own called me 'Crazy.' just yesterday. That was after I walked to her place and back to mind her child while she went to the supermarket. Instead of getting all defensive when she called me crazy I just said 'we are all crazy, just in different ways.' In no way was this an apology to her, just a reminder to her that everything thinks everyone else is just a little bit crazy in some way.

I've spent 10 years feeling guilty for having this illness but apparently I shouldn't have bothered because in the eyes of my family I've become lazy and crazy. How is it that for the first 47 years of my life I was just fine but suddenly, completely out of character, I've become lazy and crazy?

blue

[looneymom]

You are not lazy nor crazy. Your family needs to accept your illness. I'm in the same boat with grandparents. They have not come to terms with their grandson's POTS condition. They think there should be a pill that cures all the symptoms.

[Guest maia]

Same here blue. We are NOT crazy. imo, the medical establishment that expects us to live like this and turns a blind eye -however smiling and seemingly kind hearted it may be while we are physically in their presence-and immediately forgotten afterwards-while we valiantly attempt to live our lives in this condition IS crazy AND negligent.

For a long time i was angry, sad, confused... to put it lightly. Im not saying that I am not anymore, because I definietly am, but I try to shrug it off now, ignore it, put it right back on the person who is calling me crazy. I think the problem with this world now is that everyone expects there to be a pill to solve everything. What ever happened to figuring out the cause of problems, all problems, not just physical, AND finding a solution to THAT problem instead of masking symptoms and expecting them to miraculously go away. I swear the whole world seems like they are living with a child of an alcholic mentality of one sort or another. Something bothering you, have a drink. Cant live without a drink, you must be an alcoholic. Ignore it and it and it doesnt exist. Cant ignore it, you must be crazy. Cant live without another drink, you must have a problem.

[Lethargic Smiles]

Go you! I feel guilty a lot and every member of my family (siblings/in-laws/parents/fiancé) are always saying I shouldn't feel guilty. I don't know how I'd cope without that reassurance and you are really strong for vowing to not feel guilty.

I found that once I wrote my blog about POTS, everyone in my extended family was able to understand what it is I go through and how I put on a happy face. They now get that (generally) they cannot guess how I am feeling by just looking at me or observing what I've been up to the past week.

[bjbens]

I'm so sorry you're having to deal with - first of all, this illness! - and second of all unsupportive, name-calling family members. I often feel guilty , too. I think it's a common "side effect" of chronic illness and one of the reasons we need forums like this to remind each other that we did not choose autonomic issues and we are neither lazy nor crazy. Blessings to you.

[Joann]

Blue,

I am right there with you. My first 44 years of life, i never sat down. And yet now, I suddenly can't do much of anything and they all think I am lazy or crazy. Like we would want to be like this? They forget all the years we were doing everything for them and others.

My husband actually seems to be getting it, but he still has trouble realizing that if I am not able to do things, he need to.

I too feel guilty I can't do the stuff I used to and want to. My 12 year old was sad this week, because I can't take her or do much of anything with her right now. At first, she had the usual selfish mentality of kids, that I was ruining her summer, but later she apologized. I hate that not only is this crap messing up my life but my loved ones also!

I wish I had the positive thoughts for you, but I just wanted to say I am with you. Hopefully, things will change for the good for all of us.

[E Soskis]

I've attempted to respond to this several times - I really don't know how to say what I want to say about guilt - so, I'll just say this: guilt is a stronghold that should not be allowed to take up residence in your mind. - cast it down and recognize it for what it is - don't let it take you down - stay positive - and as the British say..."keep calm and carry on"......

[margiebee]

I find that it seems like people lack sympathy for me because my illness went on so long without getting a diagnosis, even after going to TONS of doctors, that people around me came to the conclusion that I was making it up. Because surely a doctor would've noticed if there was really something wrong right? My parents claim that I "just found a doctor who was crazy like me" and that's how I got a diagnosis. To me it seems like people would be more sympathetic to a struggle like that but actually they seem completely calloused to it. So in that way, I feel guilty about talking about it to anyone around me. They all seem to hate it. When I have a flare up then they conclude I must want attention at that time.

Nobody seems to bother to research the illness and the fact that it is chronic in nature, they just keep asking "if you keep going to doctors why haven't they fixed you yet?". But I try not to feel guilty. I know that truly I am the only one I can rely on to beat this thing. I don't really have support, but that's nothing new for me. I don't feel guilty because I feel proud of myself that I never just gave up.

[cupcakemomma5]

Margiebee, this is what I adore about this forum. Even though we may not be there physically to give a huge or hold a hand through tough time The moment you get on here there is always someone encouraging, listening,sympathizing, just understanding what we go through on a daily basis. At least on this forum, if we are having a crusty day it's okay...People get it.

So be proud that you never gave up. But also know you have support in this forum

[Lethargic Smiles]

I think I'll write a post about this, but recently I've started wearing a heart rate monitor on days I will be stressing out my body or "bad" days. I shared with my family how, while I can feel sick even with a mild heart rate, my heart rate is often a good indicator of how my body is feeling. I find them frequently looking at my watch to see my pulse. It has been very educational for them... Kind of like biofeedback for the family.

For people who doubt POTS, the heart rate monitor could provide objective proof of the stress being upright puts on our bodies. I've never been like "LOOK!!", they just asked about the hideous huge sports watch, I explained, and they starting looking at it sometimes. I don't think anyone should have to prove their illness or the legitimacy of their symptoms to anyone, let alone loved ones, but I know it would be really hard on me if people in my life didn't understand.

[blueskies]

Hey Margiebee, I'd hug you if I could.

E.Soskis, you are so right about guilt.

Jackie, I'll read a post about your heart monitor.

Hey All, I thank the gods for this forum == I get more understanding here than I do anywhere. Mostly my illness is ignored - except by one dear, dear sister who tries so hard to understand.

I've been spending a lot of time lately sitting. And thinking. And I thought what have I wanted most from life for a long time. What have I wanted but thought I couldn't have because hey, I'm already a burden to my husband because he is the sole breadwinner and I've been apologising for this for so long (I've also realized that I"ve grown very angry about having to be so apologetic. Which is stupid. I don't have to be angry because I don't have to be apologetic. It's like apologising for getting cancer or something).

And I decided I need a dog for company - I've actually known this for a long time. I miss having a pet friend. And a car to get around in. I've wanted these things for a long time but didn't feel I deserved them so was not able to push for them while at the same time feeling very angry because I felt like I was letting my needs go unvalidated. I've let hubby control me through our finances and his personality and he doesn't want me to have either a car of my own or a dog. I think he's always been a controlling sort of person but when I was the person that I used to be I was up for the challenge of dealing with this. If I believed I deserved something then I believed it and he had to believe it too. But then, as I got sicker I felt like I was 'undeserving' and a 'burden' on him so I tried to take up as little space as possible and felt guilty for taking up space when I couldn't help it but I was also feeling angry that I was doing this to myself. I've ended up letting the last decade pass feeling guilty but also feeling really angry. I've expected people to treat me well but have not set the example by treating myself well and by believing I deserved some things. So, I am going to get myself a dog for sure and I'm getting a little second hand car that I can get around in and get back some of my independence. A few years ago when my daughter was overseas I borrowed her car while she was away and I felt so much happier. It really was a means to get some places that I love to go but am unable because I can't manage public transport because of all the waiting and standing and walking it involves.

blue

[TCP]

I'm sorry to hear this but family aren't always good when it comes to my health either. I have several complex problems and apart from my mum no one else cares or gives a ****. to be honest. My mum sees my daily issues and how ill I get but everyone else isn't interested...yet I am the one everyone turns to when they have a problem, whether it be big or small. I don't get mad about it anymore. I accept the way that they are and try to educate them when I can. Life's too short to bother with the hassle. When someone says something crass though I do ask them if they would like to swap places with me and then they tend to go quiet!

Never feel guilty because they have an issue with your condition. Never!

[TCP]

Hey Margiebee, I'd hug you if I could.

E.Soskis, you are so right about guilt.

Jackie, I'll read a post about your heart monitor.

Hey All, I thank the gods for this forum == I get more understanding here than I do anywhere. Mostly my illness is ignored - except by one dear, dear sister who tries so hard to understand.

I've been spending a lot of time lately sitting. And thinking. And I thought what have I wanted most from life for a long time. What have I wanted but thought I couldn't have because hey, I'm already a burden to my husband because he is the sole breadwinner and I've been apologising for this for so long (I've also realized that I"ve grown very angry about having to be so apologetic. Which is stupid. I don't have to be angry because I don't have to be apologetic. It's like apologising for getting cancer or something).

And I decided I need a dog for company - I've actually known this for a long time. I miss having a pet friend. And a car to get around in. I've wanted these things for a long time but didn't feel I deserved them so was not able to push for them while at the same time feeling very angry because I felt like I was letting my needs go unvalidated. I've let hubby control me through our finances and his personality and he doesn't want me to have either a car of my own or a dog. I think he's always been a controlling sort of person but when I was the person that I used to be I was up for the challenge of dealing with this. If I believed I deserved something then I believed it and he had to believe it too. But then, as I got sicker I felt like I was 'undeserving' and a 'burden' on him so I tried to take up as little space as possible and felt guilty for taking up space when I couldn't help it but I was also feeling angry that I was doing this to myself. I've ended up letting the last decade pass feeling guilty but also feeling really angry. I've expected people to treat me well but have not set the example by treating myself well and by believing I deserved some things. So, I am going to get myself a dog for sure and I'm getting a little second hand car that I can get around in and get back some of my independence. A few years ago when my daughter was overseas I borrowed her car while she was away and I felt so much happier. It really was a means to get some places that I love to go but am unable because I can't manage public transport because of all the waiting and standing and walking it involves.

blue

I want a dog, too....so much!