Cirrhosis Support Group

Hi All,

I'm new to this CFS forum but not new to MDJunction. I have had CFS for 3.5 years, but I didn't realize/face that diagnosis until recently.

As part of CFS, I have pretty apparent adrenal insufficiency, so I focused on that as my only diagnosis for the past year. Until recently when I finally faced the fact that my problems and deficiencies in the HPA axis, immune system, neurotransmitters, and central nervous system are all intertwined, and that I actually have CFS.

Now I've gotten to this point and am focused on a wholistic approach to helpling heal or make up for all the various dysfunctional systems.

One of my biggest challenges is helping my husband understand or getting validation from him. I told him about CFS. I sent him text about CFIDS (officials CDC info, etc.). I told him he could come with me to my doctor appointment, but he doesn't want to.

He is a wonderful husband. He is very loving and supportive of anything I want or need. He always shares in chores and helps with the kids and does his share. Whenever I ask him for help or ask him to do something for me, he always does it without complaint.

But it is only when I tell him that I can't participate in something on the weekend (like a family activity, or taking our two sons to their friend's house) that he gets that look. You know that look that says he can't believe I can't keep going. That look (almost an eye roll) that says I'm making too much out of this. That look that says I should just push through it. That look that he is almost disapproving of me.

That look makes me sooooo upset! And there doesn't seem to be anything I can say at that moment that will change his look into some kind of validation. He doesn't say anything. And I guess all I'm wanting is some sort of acknowledgement.

Usually a few hours after I've told him that I can't go do something or keep go-go-going for the day, he is fine with it later in the day. It's the initial look/shrug/eye roll thing that irks the Hell out of me. He is an analyzer and a processor, and I guess he just needs time to get used to this and the impacts it is having on our lives.

Just had to vent and work through that here

Let me know if you have similar experiences with your loved ones and have found ways to work it out.

Best wishes,

Anna

I know that look. I have been the recipient of that look countless times over the past 23 years. Unfortunately, I have nothing to offer as far as how to help him understand. It seems that some people are not able to grasp the fact that just because I'm not wearing a bandage, it does not mean that I'm not broken! I've heard this referred to as one of many "invisible illnesses". It actually took nearly 21 years for my own mother and one of my sisters to begin to understand just how real this is. It can be truly devastating. This is my first experience with a support group. My goal is to do whatever I can to let others dealing with this know that they are NOT alone!! Vent whenever you need to. You are being heard by people who have experienced what you are dealing with. Take care! Hopefully, as he learns more about the illness, your husband will learn to not give that look.

Post edited by: mikealpha1, at: 12/15/2011 07:32 PM

Post edited by: mikealpha1, at: 12/15/2011 07:34 PM

Gail,

I'm praying also.

Meg

Sorry Gail, I thought I posted a reply here but it ended up on someone elses post. I will certainly keep your dad in my prayers as well.

Meg