Impact On Relationship?

[micheller]

How does your pots affect your relationship with your spouse or partner? I've been with my boyfriend for 13 years, since freshman year in high school. We've been through everything possible. But this is really taking it's toll. He thinking about leaving. If he leaves, I have nothing. I haven't worked in 3 years except for the day and a half this week. I don't have an income. I know I've been withdrawn but I don't like people, anyone, to see me suffer and I've told him that plenty of times. I know he wants personal time with me but that's difficult when I'm bathroom bound from the nausea. I can't do a lot of things I used to. It's bad enough I've had to give up my social life, any life really. I don't know what I would do if he left and it scares me. I guess I'm wondering how you deal with your symptoms and still have a healthy, active relationship. Maybe I'm missing something.

[radiohfan23]

Hi Michelle,

Thanks for sharing this and I'm so sorry for what's happening. Unfortunately, (as I'm sure you're well aware) I think a lot of us can relate, myself included. My wife and I have been married for nearly 2 years and together for 6. I'm very lucky for what she has done for me and for how caring she has been but I fear the end is coming soon. I'm living with my parents about 5 hrs away because I'm unable to care for myself like I would need to do if I were with her. I've come to terms with the fact that I'm ill and that those close they are to us, will never realize just how horrible and serious this truly is.

Sometimes I get so angry that nobody understands how I feel and they seem way too tough on me. But what i have to tell myself is that when I was healthy before I realized this level of suffering I would never have understood it either. I can only hope that I would have been as wonderful as my wife has been. I try to stay as positive as I can for her sake because to spend excessive time talking about just how horrible I feel all the time takes away from what hope she has left. But sometimes it seems like i'm just lying when i speak positively about a horrible situation. So, what I have learned from all of this is that I may not be able to control the fact that I am suffering and likely will suffer for the foreseeable future, but I can try and make her as happy as possible and that makes me happy.

In terms of a normal relationship I have found that leaving notes, writing emails/letters, etc. have helped me stay close with her. In the past before I got ill I took a lot for granted and now that I see that, I've used it to try and grow stronger with her. But, unfortunately I feel like the reality is that as I grow more and more bed bound it is more and more likely that she will have to move on.

I wish I had better answers, I'm sure more people here do. I just wanted to share my experience and let you know that you're not alone despite how desperate and lonely this illness can make you feel.

I wish you and your boyfriend the best and will be thinking of you both!

Joe

[anaphylaxing]

I have only been going through this for 6 months and it is devastating. I totally sympathize with you. I try to tel myself it could be worse. It is hard not to resent ppl when you can tell they don't understand how hard it is for you. Hang in there and I wish you all the best

[lieze]

This is going to be an odd response I think compared to the rest perhaps but it's based on where I've been in my own relationship that we have both hung onto and neither one of us understand why.

Take care of yourself...that is my answer.

I know that it is painful to think of losing the

relationship but just try to accept where you are...

Have hope that you will not always be in the place that you are now but take care of yourself, love yourself enough to do what needs to be done and accept it.

And I almost feel like I need to add that no I'm not trying to be cold hearted.

I have just been through emotional/pscyhological trauma that I could never have imagined in my wildest dreams.

You have to love yourself first and take care of yourself-you are what matters.

[radiohfan23]

Lieze, i think you make a great point. It's easy to feel guilt over relationship troubles, but unfortunately the reality is that there is a limit on what we can manage to deal with and it's important to realize that what is important is to focus on managing and trying to overcome your symptoms versus trying to fix something that is not your fault.

Hope that makes sense.

[lieze]

You can drive yourself crazy trying to be a fixer and trying to make everything right for everyone and to put everyone before yourself. These are the traps I've fallen into in my own life.

Some things are just out of our control and I think it can be a strength to recognize when this is the case.

I have found the most peace just surrendering and letting go and trying to accept-even though it is very very painful.

[Serbo]

Broke up with my other half of 4 years to POTS. Had arythmia's for the last 2 years which changed me as a person, and then POTS after the op' to fix the arrhythmia. Other half couldn't take it, Docs not knowing whats wrong, not being able to go out, get drunk, go on holiday etc...

In my case probably a reflection on the state of the relationship, but felt relieved when it ended. No more stress of trying to hold on to something while everything else was falling down. My health overall has been better since this element of stress has been removed.

Now to focus on rebuilding the rest of my life!

I read an article an article on dating with POTS somewhere, interesting reading! Not there yet, but looking forward to giving it a go.

[micheller]

Thanks for the replies. It helps to know I'm not alone. I talked to him about it and he said he's here to support me but doesn't know how. I'm not one for change so adapting to this new lifestyle has been hard enough. I'm far from the accepting stage yet. I was always a go-getter, if I wanted to do something, I'd do it. It's hard accepting I can't do that anymore. I'm determined to not let this pots limit what I can/want to do but some days are rough. I'm so used to not putting myself first, I have 3 kids to worry about also. I guess if he leaves, that's his loss, I'm still the same person inside, just limited. It has been really stressful and I'm sure that's not helping me. I hate to be a downer but the unknown is pretty scary.

[peregrine]

My sweetie and I (together 8 years so far) are having some similar issues, although we aren't thinking of splitting yet. But I worry about it now in a way I never worried about it before. He always looks so sad when I'm too tired to do something, and when I describe potential side effects of my meds he keeps reacting with fear/frustration. He's been okay with holding my hand while we walk everywhere (or, if too hot, letting me hold his belt), but he's having a lot of trouble adjusting (and has his own untreated depression to boot). I think it's been harder than with my other chronic illnesses, because it's a daily problem (unlike the bipolar, which comes and goes and responds well to treatment most of the time) and it's developed since we met (the joint pain predates him, so he came in knowing what was going on and I had strategies to deal).

Serbo, do you still have access to that article on dating with POTS? I'd love to give it a read.

[Elegiamore]

As if we didn't have enough on our plates, we have to deal with friends, lovers and relatives that are CLUELESS. I feel for you all. The partner/spouse bit is the hardest.

Here is what I've tried for 20 years+ (close friends/family - other don'e know). I've played down how sick I am for ages. Nobody asked for info but would often give me rides. I always went to social events, even if I was sick a weeks afterwards. Did the "right things" for friends in trouble.

Then massive flairups/cardiac issues put me in the hospital and/or in ICU constantly. They say "hey, how could you suddenly be so sick when you were just kinda sick all these years? I think you exaggerating for sympathy. I think you just haven't gone out with us because you are a slacker. And it's some kind of CFS, make believe deal anyway, right? Nobody can have so many ailments at once - what baloney."

Then I tried being honest, telling close friends/family the details. Backfired. Little sympathy. Called me a a WHINER and they didn't want to hear about it. But when hospitalized at least they believed it. But didn't call or visit.

Next my PCP asks me to enter hospice. He insisted I tell relatives I'm a goner and we need help. OH NO - they all freaked and have stopped talking to me - they are "afraid!" And my bro and sis in law are NURSES! No help at all offered including financial from wealthy in laws.

My (no longer) best friend says I am a mirror - she's my age, not old and doesn't want to be near sickness/death. As she smokes, drinks, unsafe sex, etc. she feels GUILTY that I'm the sick one, not her. Being around me makes her remember she could be next, so ta ta, Elegia.

Why do people with cancer and other diseases not get this crap? They are always getting offers of caregiving and support. Local support groups is my guess, lucky dogs.

Worse yet, now I see my friends/family as BABIES and LOOSER, who couldn't handle what we brave souls go through every day. I'm starting to hate them also. Now as Lieve suggests, I just try to stay alive myself and let it all go. IT'S NOT FAIR.

Anybody with a better, more effective approach? On my third therapist - no help at all.

[lieze]

I think what happens is well when you get into relationship therapy one of the things they talk about being important are boundaries.

So when we develop a condition like POTS we have to revisit those personal boundaries and revise them so that we do not allow others to push us into a zone that is unhealthy for us.

As far as us being limited in activity and that negatively impacting the relationship that is just a reality for many of us and people will either understand and cope or not.

It's not something we can control.

The lack of support is both shocking and painful I don't know if trying to accept where people are at helps. It seems like it still hurts though when it happens.

From how it seems to me people seem very caught up in their own lives and realities.

[peregrine]

We just scheduled an appointment for couples therapy in January. I've been talking with my own therapist about our relationship in general and especially how my new issues are affecting it. He's afraid that I'll just continue to develop new bad conditions as I age (26 years old now, joints started in my teens, bipolar at 20, dysautonomia at 26) and hates how tired I get (the other symptoms bother him less). One of the comments I made is that I'm frustrated by his lack of acceptance; to me "it is what it is" and I can't change my diagnosis. My therapist's reply was that he can change (by leaving) and that's why it's harder on him. Makes sense to me. Hopefully couples counseling will help us figure out how to manage this diagnosis between the two of us.

[yogini]

Illness puts a stress on relationships like few other things. But then again, life is hard and if it weren't the illness, there would eventually be something else. We all deserve friends and significant others that stand by us through thick and thin. I have parted with two long time friends, "best friends", in part because of my POTS. One when I first got sick and one more recently when I had somewhat of a relapse. In looking back at both of these friendships, both people were always very selfish. I was ill, yet helping THEM with their problems while getting little consideration for mine. The issues were brewing for a while and came to surface due to my illness. I tried to focus on th epeople in my life that WERE there for me, though it was tough losing people that were such a big part of my life. It is a lot harder to build relationships when you are ill, but I was eventually able to do so. While it was hard at first, it can actually be a relief once you move on - not saying any of this will be the case for you, but this was my experience. I like Lieze's advice of just focusing on taking care of yourself and your kids. Counseling is a good idea too.