Me and my boyfriend have been together for 6 yrs and I have been sick since we've met. He knew everything from the start and he still wanted to pursue the relationship. When we first got together I guess you can say I was in a remission of my illness, meaning I wasn't in that bad of shape. I told him not to count on me being like this all the time. Because in a blink of a eye I can have horrible months to a year being spent at the Dr's, hospital and ER. So for the past 6 yrs, things with my… read more
Unfortunately this seems to be a common response from (male) partners. A very dear friend of mine has the most severe form of Ehlers-Danlos Syndrome, the same condition I have, and is in a wheelchair needing a carer and a PA to accompany her on doctors' visits, take her out etc. Her husband married her knowing her condition and that she was likely to deteriorate and gave up work to become her carer as she is unable to get assistance from any of the companies offering care because "her needs are too complex" Two years into their marriage he is complaining that she is "too dependent". She now has an indwelling catheter and awaiting a suprapubic one. He has told her he's not prepared to have sex with her if she has a catheter, is no longer caring for her but quite happy to sit with his Playstation and collect the money he gets as her carer. He as also told her he wants a "normal" ie sexual relationship so she is left not knowing whether he's getting it elsewhere. This is extreme but is an illustration of what can happen. My partner is pretty good but on occasion he comes out with things like "if you exercised more" or "if you changed your diet". I'm 70, ride a pony a couple of times a week and do "Over 50s ballet" weekly plus all the usual housework stuff so I don't think I'm lazy. Because of my condition I find it difficult to judge where I am in relation to things and my wrists c an give way so I'm always dropping things or banging into them. It took years for him to realise there is a huge difference between being clumsy (which I will admit I am) and being careless.
After years I finally convinced my husband my feeling is you can't make it better , please don't make it worse -- stress always does-- it was a long slow process but now he knows to just let me heal as best I can and enjoy the good times-- good luck
I wish my husband cared what I take and check on internet to learn about my condition. So while I want to say be thankful for your partner's interest, I can also understand how annoying it must be for you. No I'm saying to myself be thankful, but I do like his intentions. cheers hoping for some good years for you.
I understand where you are coming from. We already hate having to rely on others let alone them saying anything. Can you sit & have a casual chat about how you feel? Hope you are having a reasonable day today!
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