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Anyone Got A Partner Who Doesn't Understand


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I want to start by saying i have been with the same partner now for 14 years, i love her to bits and she is my world. The only thing is she is making my life a misery at the moment and has been for a while, because she refuses to acknowledge i have an illness. When i tell her i'm not up to things and explain why, she just thinks i am lazy, she also thinks i'm making things up i'm sure of it. If i feel the need to lie down she hates it and goes mental and we always end up arguing. I've explained POTS to her and tried to tell her i'm just not able to do certain things but she just says silly things like " well that can't be you as you don't have all the symptoms" or "you can't be that bad or you wouldn't be able to do things" the truth of the matter is i'm tired and i'm worn down with trying to force myself to keep up with her and her lifestyle.

I really don't know what to do and i'm hoping when i have my TTT she understands a little more if i get the dx. I must admit i am slightly bitter towards her though as she went through a very rough time a few years ago with depression and ended up getting sectioned to a mental health hospital after the birth of our daughter. She had electric shock therapy and fortunately made a full recovery but it angers me as i stood by her and was there every step of the way and i now feel she is neglecting me slightly now i am ill.

Its tough because in every way i love her to pieces and we are expecting our third child soon.

Vent over just having a think out loud session i hope you guys don't mind.

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Sounds like a really tough situation! I'm truly sorry to hear about your relationship struggles. I do think what you are feeling is normal. I find this journey to be very lonely at times and I even have some pretty good support, including my spouse. When my health mystery first started, however, we did have some misunderstandings and arguments. It was something we really had to talk through and we still work on it. It was extra hard on both of us, I think, because I was more of the motivator/leader/go-getter of our household and then all of a sudden I was struggling to get out of bed. And you're right... a hug now and again really helps.

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Hi Blobbydogger - sorry you're having a difficult time of it with your partner. When I first got ill it was hard for my wife to understand it and she similarly got upset when I couldn't keep up & couldn't help with the kids as much as I wanted to. But as time went by and my doctors confirmed the diagnosis (& she saw TTT results etc) then she began to understand. I think it's a real challenge for our partners to come to grips with such a complex condition, especially when it impacts your whole family. Perhaps it would help if she came to some of your appointments with the doc or the upcoming TTT. Sometimes hearing things from a specialist helps to get across how severe POTS can be. I also found that sometimes I just asked for a hug and explained I needed some emotional support. In doing that my wife also noted that she was living through my illness too and also needed support. Anyway mate, wishing you all the best.

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I don't think anyone really understands unless they have the disease - most autoimmune type diseases are poorly understood and also poorly researched. The tendency of medical "professionals" is to label a person "quirky" or "crazy" when they present with a batch of symptoms that does not fit in a traditional disease model. So, if a medical professional blows us off as "nuts", then it stands to reason family would do the same thing - I've totally given up on trying to explain this disease to my friends and family - they really don't want to know and they just want me to be "normal" - so, I take care of myself and do the best I can. I am so sorry that we don't have adequate support systems - I see other people with diseases not as bad as mine receiving all sorts of support from family and I think "wow - wonder what that would be like?"

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I think that probably 90% or more of women think that their husbands don't help out enough in the house and with the children. I certainly think my husband doesn't (he would give a hurt look if he saw I'd written that). We women are also more touchy about this when we are pregnant and probably struggling a bit, hormones up and down. I can see you have a really difficult situation - even if your partner understands to some degree, she is probably struggling with being pregnant and looking after two children and just wishes you were well. Are you able to sit on the bed while playing or reading to the children? In that way you would be helping as well as putting your feet up - I often play board games in bed with my kids?

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My spouse is not exactly a sensitive kind of guy. It was hard for me to go through this at the beginning because of that. It affected how much help I would need when he was around. Then I realized it wasn't ok. This is not just a physical experience but a mental one as well. We need both kinds of help to get through this. Here is a link about my personal experience if you are interested. I found getting my feelings out helped my relationship with others, especially my spouse, even when I thought it wouldn't help. Tell her how you are feeling emotionally trying to get through this and maybe she will see your perspective.

http://focusedonthepositive.blogspot.com/2014/03/learning-how-to-live-with-physical.html

Good luck to you. You have support here!

P.s.

Now that he understands my husband is the one telling me to go rest. Give it some more time, and if you pray try praying for your spouse.

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My partner understands for the most part, but my parents really don't. It is really a horrible feeling when you're very sick and those close to you are trying to blame you for it. Maybe she can go with you to your TTT or whatever POTS doc you have, and she might gain better understanding by talking to them?

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My hubby has not been as understanding as I would wish. I kept hoping for this but I may not get it so I have really had to rely elsewhere for support. I think it has made me stronger actually because I have had to be my own advocate and this has certainly shown me who is going to stick by me in the long run. I try not to judge the folks that drop off as they may have their own "stuff". It still ***** tho not to have a partner who is right there in the thick of things with ya. I did find that our lack of understanding is sometimes a lack of proper communication and/ or miscommunications. It did help when he saw a cardiologist with me who explained POTS and said I am like a Ferrari when it comes to heart rate upon standing (hahaha) and I should be a minivan instead.

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I know what you're going through. It's the same with my husband & family. I think (speaking of my family) they just don't care. I've learned to "suffer in silence". If they ask how I'm feeling & I start to respond with the truth I can't see a blank look on their face & I simply say "I'm fine".

Hope things get better for you.

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He's not my "partner" per se but I live with a male roommate and at the beginning of my illness he'd see me lying down after work and say stuff like 'you're tired already, you only worked 5 hours' or on my days off I'd sleep late and he'd say 'get out of bed, lazy chickie' I know he doesn't mean it to be hurtful but it was, he's older than me and he raised his kids to be hard-working, even he himself doesn't sleep enough, he's a trucker and goes out driving all night on not enough sleep and he's done it for 38 years so he automatically thinks if he can do it anyone else should be able to too. But recently with my last few flares I've had he is coming to realize that I'm not lazy and I'm not faking it... I've come home early from work and he can see that I'm just able to drag myself in the door and plop down on the sofa with my eyes at half-mast... now he says 'you've been sick for a while, it's time for your doctor to figure this out' so at least now he believes me! But still I hate remembering how many times he called me lazy, stuff like that sticks in your head. And I'm not lazy. My last job was factory work, continental shift! Ahh back in the days when I was healthy...

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Hi!

I'm fortunate to have a supportive partner, but, even he has his limits and days when he just zones out and needs to be in another room from me.

I had a caregiver experience about five years ago and it really opened my eyes to what that side of the equation was like. So, when I get angry or frustrated at my husband for not being there for me or for not putting the groceries away when I clearly can't get out of bed or forgetting to get the mail again, I stop and think for a minute that he's going through this too and he's lost a big chunk of me to illness, and he has to cope with that. It's very frightening, lonely, and exhausting for partners of sick people. Taking care of other people can be a health risk in and of itself.

Every sick person deserves to be believed, supported, and loved. But, I think sometimes the reactions from partners are from feelings of helplessness and fear. Sometimes they don't believe you because they don't want it to be true.

(And, sometimes they're just being ******.)

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