Relationships and sarcoidosis

[Guest guest]

Once again, I find that the discussion of our relationships and chronic illness are making us face some hard issues.

I know that many times when arguments start, and things are said in anger- that it hurts. It really hurts. So how do we handle this?

One of the biggest things that I've learned over the years, is that when my husband is on the defensive, and he's looking for a fight, he's already spent most of his day mulling over the changes that chronic illness have demanded from him. He's been arguing with me --in his head-- for the day. I'm screwed, becuase when he does get home, it is only going to take a look from me-- and he's off.

After he blows off the steam he's been percolating all day, then he's fine. It's over-- at least for him.

I'm devasted, and lost, and wounded. So, I either jump back at him, aiming for his nuts via his throat, or I can let myself stew, and then get him later.

Well, we all know that neither of these works.

So, I try to tell myself to take a deep breath. Many deep breathes. Sometimes it works, and sometimes not.

What I do know is this-- every time he goes off- he has started with the thought of losing me. He's been thinking about what will happen if I get sicker and can't do all that I do now. He knows that he doesn't want to take on more, and is so overwhelmed-- that it's easier to get mad, then to talk about the real issue. The real issue is fear. Fear of being alone and having to start over. Fear of not being able to hug me. Fear that my voice will not be there to tell him to mellow out.

Anger-- the protector, is so much easier than to be vulnerable and say that you are scared. Men don't want to be scared. They need to be strong, and keep us safe, and make the bad things go away.

Needless to say, that doesn't happen with chronic illness.

So how do we handle these explosions.

First off, it's not about you! IT'S NOT ABOUT YOU!!!

It is about fear. Not just the loss of his loved one-- but also the financial changes, the social changes, the kids, the extended families, the self-talk that he is doing to himself-- and the fear that he has and is failing you.

When we can remember that their anger is about all the stuff in their head that they are being too tough to say-- we need to step in when things cool down, and ask-- "I know you are angry, and scared that as my disease progresses, that you are failing me- and I want you to know that you are not." "Honey, please- lets drop the anger and talk about what is really behind this. You've said that you're tired of --taking care of me, cooking all the meals, carting the kids around, not having a partner to make love to, whatever it is..."

You may even want to start with something like "honey, I know that you are so angry with having to have taken over the finances, the kids, the .... And I want you to know that I understand, and i'm frustrated that this has happened to me. It's not what either of us signed on for, but it's here. So can we please talk. I don't want to argue, I want to talk."

These are skills that I've learned from too many years of therapy, and I still have to talk myself thru the steps each time. When we are feeling like we're being attacked, it's normal to become defensive, and attack back.

One thing to remember, if anger is returned with anger, the energy becomes magnified. If we can be open, and remind ourself that it is NOT ABOUT US then we can begin to allow a line of communication to open.

For those of you who have not already read Piburn's BEYOND CHAOS, ONE MANS JOURNEY WITH HIS CHRONICALLY ILL WIFE I highly suggest you invest. This book is so good for couples-- read it together, or ask your spouse to read it. It is written in guy talk, so guys can understand it. It will open doors to communicate. (This couple was featured in ARTHRITIS TODAY magazine this month).

From where I stand, this can either be an opportunity to grow together, or a reason to run. We can choose what we will do, and we have to allow our partners to follow their path. It will be better that we occasionally find ourself on the same path, together. So if you can, put away the shields that block your heart from opening to an experience -- anger, shame, guilt-- you know the ones that close you off-- and trust that you will grow. No matter what happens, you will grow from having a chronic illness. It is my hope that you come to know that even though it is painful at times, it is what you make it-- joy or sorrow.

Love to us all,

Tracie

NS Co-owner/moderator

************************************** See what's free at http://www.aol.com.

[Guest guest]

Thank you Tracie for all your love and understanding and for being able to put into words what we all feel.

Pat

[Guest guest]

Thank you Tracie for this email. I do not have a husband or significant other, but I do have problems with my daughter. She has told me my condition is depressing and even asked me not to come to a jewelry party she had invited me to. That hurt a lot and she has stopped talking to me and does not even bring my grandson to see me. She wants me to drive there and I can't. So these issues that everyone goes through on top of the condition makes it that much worse.

Thanks

KatSee what's free at AOL.com.

[Guest guest]

You are welcome Pat, I'm glad that we can help each other on this journey.

Tracie************************************** See what's free at http://www.aol.com.

[Guest guest]

I do not have a husband or significant other, but I do have problems with my daughter. She has told me my condition is depressing and even asked me not to come to a jewelry party she had invited me to. That hurt a lot and she has stopped talking to me and does not even bring my grandson to see me. She wants me to drive there and I can't. So these issues that everyone goes through on top of the condition makes it that much worse.

Kat,

I totally understand. It doesn't matter if it is our spouse, or our kids, or the people we work with, or friends.

When someone sees us on the declining side of chronic illness, it is hard. They don't know what to say, how to say it, they don't know if they should ask what is happening, they want to know, but when you tell them that you are in the 1% that this could be life threatening, they run.

Facing your own mortality is hard enough. Facing a friend or loved one's-- is harder- for that person.

A month or two ago, I went to my local pharmacy to pick up a script, and the owner and his wife, who have been close friends for the 17 yrs I've had the sarc, came out from behind the counter, and both gave me a hug. It was then that told me that she was so glad that I was still alive. The last time I'd been in there-- over a year ago, I looked like death warmed over.

I am fortunate, for me, the protocol I am on--- the Plaquenil, the Methotrexate and the Remicade-- have helped so much. I have been able to get off my oxygen during the day, and I am getting around better.

But what was interesting to me, is that here are two medical professionals, and they thought they couldn't say anything to me. I used to work in the building where they have their pharmacy, and we'd have wine and crackers and wonderful conversation after hours. I helped them convert to a computerized billing system, and worked on the contracts with different insurances to get them the best reimbursements. So they knew my history, and they have kept track of me, but it really came down to them having to look at their mortality, and mine.

Now, I'm no longer feeling like death warmed over, and am fighting to come back into life-- living for the now. In some ways, I'm glad they didn't approach me-- but I had also felt left out, and so wanted to approach them. Rod has been great at explaining the meds, the side effects, and making sure that I had the supplements and counselling I needed to understand what was going on.

Now that it's time to start living again, it is so important that we don't let that energy of defeat take over. It only wastes what we do have.

Well, that took alot of words to get to the point-- so--I'll say it again, as much for myself as for all of you,

DON'T LET THE ENERGY OF DEFEAT TAKE OVER-- YOU WILL WASTE THE BEAUTY OF TODAY!!!!!!

hUGS,

Tracie************************************** See what's free at http://www.aol.com.