How to help your partner understand?

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How to help your partner understand?

Postby patoco » Tue Jun 20, 2006 6:20 pm

How to help your partner understand?

Lymphedema People

http://www.lymphedemapeople.com

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Originally Posted May 20, 2006

Any suggestions for helping a partner understand that I'm not "super person" anymore? My BC and recovery led to diagnosis of truncal lymphedema, as well as in my arm. The last year has been a roller coaster of pain and trying different treatments. I seem to be handling it okay w/therapy but my husband isn't. I can't do what I used to do. Anyone have a partner/spouse who went to therapy? Are there support groups for caregivers?

Any help would be gladly accepted. We've been married 36 years in August and I love him dearly--I just can't be his "therapist."
take care all,

bygrace

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Responses

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gottahavsun

When I was diagnosised 2 years ago my husband was also not very supportive that I was unable to "do it all" like I had done since we met. My husband's saying was something like-buck up and drive on(thank goodness I can't still here him saying that in my mind-lol) My husband was in the Army at the time and could not understand why I couldn't just keep on going at the manic workacholic pace I had been. I think the fact that we don't have something like cancer that everyone knows about is at our disadvantage because we have to educate our loved ones as we educate ourselves.

My husband and I went to marriage and individual counceling to deal with this big change in our life and still go about once a month. Last June I stopped working because I just couldn't keep up that pace anymore, so having him understand that made it so much easier.

If you can get your husband to go to therapy to discuss how this illness affects him, that would be great. If not, maybe he can come with you to one of your sessions with your therapist so you can openly discuss it together.

You might look in your area for a chronic illness support group and see if they have support for family members as well.

I know it is dificult with what you have been dealt in the last year. It has helped me that by remembering that this illness has affected us both and it will take us awhile to accept and manage our new life with the changes LE has made in our lives and relationship.
Take care!

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silkie

Hi Bygrace.

I think not just partners but families to
have such a hard time of understanding what is going on

Why should they ? doctors half of them dont many tell us live with it get on with it and i still get days when i what to scream WHY ME!

i find talking to others that understand helps me

but thats because they know what it feels like

our families dont have anyone unless they talk to other families

A carers forum Mitch (gottahavesun)talked to another
carer

I have never been to see a councillor I know my family

would have issues with it it is just the way they feel

and to be honest finances would make it something out of reach

we do have family talks all in there round the table have done since

the children were tiny that helps

but i think mostly like always i keep much of the frustrations to me

it sometimes is esier my family to needed time to come to terms with

lymph and what changes it meant to the whole families

life not just mine

i had the lymph and the lip so i new what it was doing to me

they had to learn to accept it to

and i had to have patience with them as well as my own frustrations

it wasn't easy for any of us still is difficult for some of them

say at a time for all of us

huggggggggg

Silks xxxxxxxx

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joanne johnson

Hi Bygrace,

I have had lymphedema in my legs and countless infections for 25 years and my husband and kids still don't get it. I think it is probably my fault because I continue to do more than I should, so that sends the wrong message. Naturally, we want to do the best we can at all costs.I think the above advice is the best even though I have never done it myself. A therapist or doctor may be able to explain the situation best. I also think that spouses and family have more trouble than we do in accepting the life style and limitations of lymphedema. You are far from alone in this department, unfortunately!
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