NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › partners of people with these diseases – what do we do ?
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Dr. Diana.
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March 15, 2012 at 10:43 am #135
wilmaybee
ParticipantMy girlfriend of 3 years has mass cell disease and organic brain disease. She has pushed me out of her life several times in the last year but then we get back together again. The reason she has given me is that she has no feelings for anyone including me.
I have stuck it out and never considered walking away from this. This time it has gone on since Feb 13th, and she refuses any contact with me. I am being told that she still loves me and misses me, but she does not respond when I have tried to email or text her nor has she made any effort to call me. When I call her which has only been twice, she keeps the conversation blunt and to the point. I have not “bombed” her with emails, calls or texts.
I am trying to give her the space to miss me some and maybe reestablish some kind of contact with me. I want to do what is best for her, if that means move on, then I will. If that means wait for her to come out of her fog I will. There seems to be a lot of info about all these conditions on here but very little support for what the partners can do and what the partners go through.
I do love her with all my heart and I can only imagine what it is like to be her. I would do most anything to have her back in my life, but at this point she seems distant and disinterested. I don’t feel I can treat this in the same way as a typical relationship because of the implications of the organic brain disease etc. I am also aware she may be trying to set me free from being tied down to her disease. I don’t want to be set free, I have been through all of this with her and will gladly continue loving her unconditionally.
If she would allow me to, I would stay by her side till her last breath. Yes I have told her all this and she knows these are not just words to me. I have never flinched once in our entire time together however this silence between us right now is unsufferable.
Any suggestions or thoughts on this topic would be more than appreciated. I am hoping someone can give me a little crumb of hope. Thanks in advance.
March 15, 2012 at 11:00 am #1843wilmaybee
ParticipantMy girlfriend also seems to be suffering from some type of emotional intamacy avoidance issues (not sexual) and has refused to share with me any real feelings. Perhaps some of you will be kind enough to share the answers with me on this? How is it that you really want to be treated by your partner?
March 15, 2012 at 1:19 pm #1846JenniferWaters
ParticipantI think issues like this are always specific to individual relationships.
Personally, I do this A LOT (when I’m dating). I’ve pretty much stopped dating now because I end up hurting people. Guilt is a huge factor here, at least for me. We can’t help but push people away for a few reasons:
-we are sick and don’t want to be around anyone
-we don’t want to burden anyone with our chronic illnesses
-we have no desire for company and we may not know why
-mood swings can be unexplainable and unavoidableI have experienced every one of those things. What it comes down to, I think, is how long you are willing to stick around and what you’re willing to give up for your partner. There may come a time when you have to make sacrifices to stay with this person, whether they be sacrifices of time, energy, etc. That’s not easy for anyone. There is the other issue of resentment if you DO stay. Do you think you will end up resenting your partner if it becomes overwhelming? Look down the road, and consider this from all angles.
It’s great that you seem so dedicated and concerned. Many people are deprived of this kind of comfort.
Knowing you are ‘out there’ even if you are not ‘right there’ might be comforting to her. It is to me. But I also know this appears selfish – picking people up and putting them down as I like. This has forced me into isolation because of the guilt I feel. Perhaps her guilt is great and consuming her.
March 15, 2012 at 2:06 pm #1848PalominoMorgan
ParticipantAs a sufferer of organic brain disease and mast cell (and lots of other stuff) I have been in her shoes. In my case it took me telling my then other Hal’s “you are asking to pre-board the Titanic. Are you sure that’s what you REALLY want to do? Because the only thing worse than doing all this alone is to start down a path with someone and when I need them most they aren’t there.”. In my case she said yes, but her actions later proved otherwise.
There is guilt, doubt, and anxiety that if you truly open up to someone they will use it against you, abandon you, etc. I would guess she has been burned before by people close to her. This is the only way she knows how to cope with it. If you TRULY mean it when you say you know what you are in for then stay supportive and let her know you aren’t going anywhere. This may be a test that even she doesn’t realize she is doing to see if you really mean it when you say you’ll wait for her.
The other key is she needs appropriate medical treatment to control pain, mast cells, brain issues, and therapy to handle all this emotionally. Without therapy as a safe place for her to work thru some things this may never change. It is a SERIOUS CONSCIOUS effort to put ourselves in a relationship. Guilt and similar feelings are a huge burden/obstacle to overcome.
March 15, 2012 at 5:16 pm #1852wilmaybee
ParticipantYes I am aware that everything will probably get a lot worse before it gets better. I also know it may not get better at all and may just continue on a downward spiral. I am as ready as I can be for this. There isn’t any resentment at all at this point and I don’t think I will allow any. I was fortunate enough to know her before all these symptoms hit her, and I have been with her every step of the way that she would allow. For me falling in love is more than a feeling one has, it is also an obligation, to stick things out. I have never thrown any of this up in her face and never have any plans of doing that. Even with all that she is going through she is one very amazing lady, and I would feel honored if she but allow me to go down this road with her. Yes I am aware that this won’t be easy. In my heart of hearts my fondest wish is for her to just know I am there or just a phone call away and that I can be trusted with this as well as anything else that might crop up. I have a strong Christian faith and that will carry me through anything. I also accept that no matter what I may be feeling, she is probably feeling worse. Love for me is not about conditions, it is about loving even when everyone else would run and hide. I do thank you for all of your input, I know all of you are going through some pretty tough things as well. I know it may have been an effort to share these things with me. Please feel free to share all that you can with me, I really want to understand and know all I can about this. If she could open up to me I would learn it from her, but she does not seem able to at this point. Please continue to post anything that might be of help. Thanks so much !!
March 16, 2012 at 4:03 pm #1858wilmaybee
ParticipantPlease continue posting in this section so that I may learn all I can. Thank you !!
March 17, 2012 at 10:07 pm #1867Dr. Diana
KeymasterHi Wilmaybe, I know we’ve “spoken”, and I’m so glad to see you here. for you and everyone with whom I have not shared this, I wanted to tell you that for a few years, I developed what I considered to be a “flat affect” (I didn’t show emotions very easily). I’m not sure if it was because I was so adrenergic, I just couldn’t without imploding, or if it was part of the Organic Brain Disease. After reducing the pressure on my brain, the emotions cam back in SPADES, and I was a slobbering mess. That all sort of evened out eventually. there is a name that docs/psychiatrists use to describe the social withdrawl that many of us suffer. It’s “sickness syndrome”. I am SOOO eager to get us all on a registry to check our inflammatory cytokines and to treat them if they are out of wack, because I noticed an (almost) complete stop to this when on treatment. Wow. Actually, I couldn’t believe it because I felt as though my brain had melted! There is so much hope for us all, though. I really believe that. As I watch my kids just kind of pop right back to normal (basically), I am in awe of the body’s ability to repair itself, given the right nudge with medication. Hang in, my friend. This is such a rough ride for our partners and children, too. You sound like a rara avis. So many of us have partners with marginal at best, empathy skills. She is a lucky gal to have your caring, even if she is not embracing you right now. That may change. And dare I say it? It can change quickly. Big hug, Diana
March 18, 2012 at 2:04 pm #1871wilmaybee
ParticipantThank you Diana and all those that have posted here thus far. I know it may be a little selfish of me, but I can’t help but feeling there are other partners on here as well as myself that could use a bit of encouragement. I ask all of you, even those that have not posted yet please please share your side of this. You may not even be in a relatinship or have ended one because of this. I ask all of you please do this for those of us that are partners, we need and want help and encourement too !! For those of you that have already posted you have my heartfelt thanks, if you can think of ANYTHING that might be of help please post it? Thanks to all, in advance.
March 20, 2012 at 8:48 pm #1888Dr. Diana
KeymasterThank you Diana and all those that have posted here thus far. I know it may be a little selfish of me, but I can’t help but feeling there are other partners on here as well as myself that could use a bit of encouragement. I ask all of you, even those that have not posted yet please please share your side of this. You may not even be in a relatinship or have ended one because of this. I ask all of you please do this for those of us that are partners, we need and want help and encourement too !! For those of you that have already posted you have my heartfelt thanks, if you can think of ANYTHING that might be of help please post it? Thanks to all, in advance.
An excellent point! I’m sorry I didn’t even consider that there may be other partners (I call them “angels”) on this site. How wonderful would that be?! If so, please speak up! We would ALL love to hear from you.
Thanks so much, wilmaybee -
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