Hi

My fiance, who in the past I called my financial rock.  I guess has had it with everything. He has tried, I guess in his own way, to be supportive about my being sick. I directed him to this site last week & he has yet to take a look & not for a lack of time.

This morning he told me I "should just get a job & have my clusters there". What an not a very nice person. I was soooooo pissed & refused to fight with him (stress being a huge trigger 4 me), I went into the bathroom until he left 4 work.

I am so sick & tired of being sick & tired. I feel like I am just stuck in the corner of a room with no escape. How could anyone think that someone would WANT to have this fucking disease??????????????????
I wish that he could have it just for 1 day.

How do you handle/be with, someone like this??? I feel like packing it in, up whatever. And then what?? Go.........where??

Deb

While CH does NOT define who I am, face it, it's a huge part of my life. If my wife treated me like that, I would not have been able to stay married to her. He must be made to understand for a large percentage of us, CH is here to stay. If he wants you, it's a package deal, you AND your CH.

I'm with Brew. A third party could go a long way to opening eyes. Wishing you luck. Having someone who supports me through CH is the only thing that's gotten me through some of the dark times.

Joe

My wife doesn't come on this site either.  She doesn't really get the bond that is created between us.  However that doesn't stop her from being a great supporter.  I couldn't get through this without her.

It sounds like he either a) doesn't want to understand or b) hasn't heard the message in terms he can internalize.

Brew's advice is good.  A third party could help with what I see as a communication problem.

Once he truly understands what is going on here, he has a decision to make.  And so do you.

Good luck...

-Dennis-

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Brew nailed it. That needs to be rectified before any thought of marriage or long term relationship happens.

Deb,

I'm sorry that you are having a rough time.  It is hard enough to deal with CH without having to deal with comments like that! 

Is he like this all the time or is it possible that he was just having an off day?  CH takes a toll on supporters too.  I sometimes wonder what kind of supporter I would be if the roles were reversed at my house.

Just trying to see both sides... I sometimes say things I don't mean.  Maybe he did too.

Jeannie

Before I was finaly properly Dx in early March of 2004,  I was involved with someone.  We had viewed and selected a home that we were going to put an offer on contingent on the sale of the condo he owned and was renting out.  He was going to move here, transfer his business here. 

Then in March, the beast morphed on me.  He had been aware of the the night time attacks, and me eating ibuprofin like candy during the day for what I know now were shadows, but that spring, I'd quit smoking and then the attacks were coming at night and during the day.  Anywhere from 3-5 attacks at first, then up to 6...then up to 8.

First saw a GP and was started on Relpax and neurontin.  Nothing.  The boyfriend was insisting on an MRI saying he thought I was having annurisms.  Cutting to the chase of the matter, finally the GP stumbled across CH information and called me at home on a Sunday night to tell me he thinks he figured this out.

Off to the Headache specialist at the hospital who confirmed CH after the MRI.  I found this site when he first mentioned it, and read all I could before seeing the specialist. 

The boyfriend, when learning that this was NOT an anurisum, nor anything else organically wrong started to tell me it was all my imagination. 

So while working with the secialist to try to get the CH under some modicum of control, 2 rounds of prednisone, imitrex injections, anti depressants, tomomax ect...the boyfriend turned to me one ay and says that I'm no longer the Pegg he knew and loved.  I'd changed, and he could no longer be with me.  He never accepted the doctors Dx, and he was angry because I wouldn't admit that this was just a temporary afliction and that a few days sleeping it off under high doses of serequil would put everything right again.

I even gave permission for him to talk to the specialist himself to no avail.  I was taking the word of a doctor, and advice from some "stangers on some website" over him.

Well...I'm still single if that gives you any indication of what I thought of that whole mess. 

Yes it hurt for quite some time.  But I came to realize that I was better off supporting myself and what I knew, than to have someone in my life who was unsupportive and undermining me every step of the way. 

I'd changed?  Damn straight I'd changed.  I learned there was no cure for what I had and there is a process of coming to acceptance with that.  I was heavily medicated and dopymax was stealing IQ points faster than I could blink.  I was tired, at the edge of my last nerve.  Frustration and anxiety was running rampant and I was off work with no income at all under doc's orders.

Damn tootin' I'd changed.  And for the better...without him.

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  This quote above...to me says "RED FLAG   RED FLAG   RED FLAG !!!

CH or not, this guy doesn't think very highly of you, and his attitude will spill over to other parts of your life together.

i am with a few of the posters in wondering if he has been a good supporter for you but is burning out OR is the CH you too much for him to handle.  I have often said I would rather have CH than my wife have it, I think it is harder on supporters than those of us who have the headaches.

Your comment when you said you wish he could have Ch for 1 day says a lot too.  You are justifiably angry but that is even a bit too far for a loving relationship.  If counseling isn't an option and he doesnt want to learn more, you guys need to learn if you really love each other or not.  If you do, counseling is a smart option.  If not, I think it's time to move on.

FramCire wrote on Feb 20^th, 2009 at 2:09pm:


I agree.  Very good point Fram.  I would not wish this on my worst enemy let alone someone I truely loved.

-P.

The hardest thing for a supporter to be a good supporter is to be able to UNDERSTAND what it is like for a CHer. A supporter can never actually feel the physical and emotional pain and the mental exhaustion a sufferer goes through but he or she can understand how terrible it is.

CH is such a rare condition that most people have never seen it, never heard of it and the degree of pain is so out of the norm that it is almost impossible for the average person to grasp what it is like.

That is why even doctors seem to fail to be compassionate and they are supposed to be knowledgeable.

It is much easier for the average person to be supportive of other common medical pain like a broken bone or even cancer, because the degree of pain is public knowledge. 

The second difficulty is how much an individual supporter can take. Some can take more and some can only take so much. Supporters themselves need to be supported, not by the CHer while in cycle, but by others, such as friends and relative and even maybe a counsellor. Supporters can certainly get burnt out if they dont look after themselves.

CHers have different styles of coping too. I know some clusterheads who would hide their hits and not share the full details of their condition with their loved ones and I know others ( like my late husband ) who look to their supporters for being their rock. As in any relationship, if one party's need is not met by the other, its a recipe for disaster, not just in relation to CH but everything.

I am really sorry to hear that your fiancee said something to you that hurt but when you feel a bit calmer, please consider this : you have all the people and support of this site, does your fiancee have any ? Do you know if he has friends or relatives whom he can talk to ?  I understand that you have asked him to come to this site, but he might have thought that if he comes here, all he will get is criticism about how unsupportive he has been to you. He might be scared that he wont have a chance to express his feelings. No one wants to go anywhere they feel they might not get welcomed. Maybe if you ask him to come talk to other supporters who can understand how hard it is and who can help him cope better with the whole situation, will be more enticing.

Unfortunately, we cant force anyone into understanding, caring or loving us. It has to come from their hearts. However, maybe if we show understanding first and make it easier for others to care for us, things will be better for everyone.

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I'll agree that as a supporter I've never felt the physical pain.  

However,  I've felt the emotional pain in spades and the mental exhaustion too.

Deborah,
There are a bunch of long time supporters here.  I'm sure that one of us would be more than happy to speak directly with him.  If that's an option or you think it might help, send me a PM and we'll see what we can do.  OUCH also has a Family Services Team that works directly with individuals.  Check out the OUCH website button on the left.

Jackie

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Deb,

I hate to disagree here, so take this as just a loving dissenting opinion.  I pray my wife and children can never understand the pain I go through.  In fact I often try to lie to my wife about the severity of the pain to keep her from having to see me in pain but she can see it in my face so it is never effective.  I do apologize to her because being less then completely honest is not acceptable, but as I said, I do NOT want her to be able to understand.

When my wife was in labor with my first child, I was horrified at the pain she was in and I felt completely helpless to help her.  I even begged her to get an epidural.  Honestly, the supporters here severely UNDERESTIMATE the mental anguish they go through.  I will say it a million times, my wife suffers more with my CH than I do IM HO.

Anyway, he doesnt need to feel the pain to understand how bad it is.  He just needs to have a way to relate to it.  My wife has heard woman say it is more painful than labor, and since she has been in the delivery room enough times, she has a very good idea.

Anyway, his phone call is a good start.  make sure you present him with that letter in a loving way so that it does not become confrontational, since he already apologized.

Anyway, let us know what we can all do to help.  Many have offered specifics, I will be praying for you that your support system will continue to strengthen.

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Food for thought - sorry for the pun!
Glad he's apologized already so he will be more open.  Use the opportunity to point out that there are supporters who know what he's going through on this site, as well as what Jackie mentioned.  A good phone call from someone wonderful like that could be a key.

I hope its his fear talking and it's not a lack of love.  People say things they don't mean when angry or scared, which could apply to the both of you.

Good luck tonight ~ 
Pepp