Something My Husband Said That Really Hurt Me

[mae]

I have been ill for awhile now and you know the battle we all share to even be truly believed .... Last night, which is not the first time I seen a lump in my breast and I showed and told my husband , it has happened 2 other times in the past 3 years and it will just appear and disappear. But it really worries me and I said I should really get this checked while its visible because when I went to the doctor last time it disappeared. And being 30 they just didn't look into it any further. He said your beginning to look like a hypochondriac it hurt really Bad. During this struggle to find answers from doctors since I've been sick he always had negative things to say and gave me a hard time taking me to doc appointment and always making me feel guilty or really like a burden. This is hard he is all I have but I know its not right to be treated this way. And walking away is not easy with this illness and having 2 kids 2 and 1 and no support.

Mae

[Brye]

I end up feeling guilty a lot also. Every time I have an appt my husband has to take off of work. Some times I feel like he thinks I'm lazy because I can't keep up with the chaos of my life and keep the house spotless and have dinner on the table. I draw my strength from my closest friends. I always felt he should be my #1 support system but I've found he just doesn't get it. My kids are 6,5,2, and 1. I can barely muster the energy to keep up with them much less all the other daily tasks that go along with it. I can say that when I do have a crisis I have VERY dependable friends who do understand and will cover for me. The last time I passed out I was walking in my neighborhood with my 2 kids in the stroller. I made 1 phone call to a friend when the ambulance got there and I had someone to pick up my babes and rides lined up for my older 2 after school. There is a MOMS club in our area that is organized through a Yahoo group. You should see if there is one in your area. It's a support group for moms and has been my saving grace. I've met some of my best friends through that group. I so understand the need to vent and I'm so thankful to all my friends who have listened to me vent over the years.

Brye

[mae]

Thanks Brye,

You have some positive input and I really appreciate it . This website is a wonderful place and it helps me get threw in so many ways

Mae

[firewatcher]

When all this "started" for me, I became a research hound...constantly on the internet, writing and revising symptoms lists and medical history. I did not yet have a doctor to bounce things off of, and once I looked up from the computer and told my husband I thought I had found something that sounded like it might be "it." He said: "What do you think you have now?" (!!!!!!)

Before we were ever married, we made a pact to NEVER cut each other down or say anything belittling or derogatory. He KNEW there was something wrong, so we had a talk right then and there. It involved phrases like "for better or worse" and "support each other" and "in this for life." He still regrets saying that, and has never said anything like it again.

You married each other for a reason. This is the hard part, I pray for you that it never gets harder on either of you than it is right now; this is the "worse" of for better or worse. If you ask him for support until you find a doctor who can treat you, and tell him how awful you feel and how awful you feel about feeling awful...will he understand? Will he help? You don't want to do this alone. It is HARD when you are alone, it is even harder when you have little children and you are alone. One thing for you to understand, if he is a caring compassionate man, he is watching you suffer and no one can tell you why...and it HURTS HIM! He can't fix it, he just wants his wife back. Men tend to show their fear and uncertainty in ways that are strange to women, often they will bottle it up and only let it out in explosions (not very healthy) instead of talking about it like women do.

All I can do is offer prayers and support. We are all here FOR YOU!!!!!!!!! Vent, question, scream, whatever...but do it here! It helps.

(((((((((((((((gentle understanding hug))))))))))))))))))))))))

Jennifer

[potsgirl]

I have to agree with Firewatcher/Jennifer. We're all here to support you and perhaps you need to sit down with your husband and really talk about everything. A negative support system brings you down more than anything! Hang in there, and know we're all here for you!

Ciao~

jana

[janiedelite]

Thank you for sharing your experience, Firewatcher. It reminded me of last summer when my POTS really flared and I began to have burning pain all over my body. I was in so much pain and spent most of my time on the internet, trying to figure this out, too. I went to doctor after doctor and they had no answers for me. My husband felt horrible watching me suffer and was helpless to fix me. He made a comment one day while I was searching on the internet that maybe I needed to realize it was all "in my head." After he said this, I cried and felt so alone! I realized that I needed a bigger support system than what I had, and I needed to adjust my expectations about our relationship and not solely talk about my illness with him. We had good health coverage for counselling, so I started seeing a therapist who I could talk with about all my symptoms and feelings and who supported and encouraged me and helped me cope.

In the meantime, hubby realized that he'd messed up big time. He explained to me how helpless he felt and that he would do anything to help me feel better. He honestly thought that if I could mentally tell myself that I was fine that it might help! I explained to him that if I at least knew why my body was going through this, I probably could mentally deal better with the pain and fatigue. He explained that he felt he was losing his wife, not to the disease but to the computer. He understood my need to search for an answer, though. So I made it a point, after that, to spend some time each day with just him. I continued with the therapist, too.

We both talked with the therapist by the end of the summer about coping with this illness. It was a really good thing. It helped us to understand ways we communicated ineffectively, underlying fears related to our pasts, and ways we could effectively support each other. We've only been married since 3/07 and since then I've had 2 hip surgeries, 100 PT appointments, chronic frostbite, disability, and POTS. We laugh about the "in sickness and in health" but know that if we can make it through the ups and downs of POTS, with God's help, we'll be in pretty good shape!

Mae, I know how hurt and alone you can feel. I hope I gave you a little hope by sharing my story, at least so you can find the support that YOU need.

[mae]

(((((HUGS)))))) It did help to hear what you all had to say it has been hard and I know it is hard for him too, and he has said he doesn't know what to do to help and he feels hopeless.And he does say he wants his wife back or at least find a Doctor to tell him exactly whats going on so we can JUST KNOW and manage it...I just hate when he says those words of disbelief when he knows its just because he doesn't want it to be OUR REALITY. I wish I could give him comfort and also receive it because I need it so bad .I thought of a therapist but I feel more comfortable here because you all know what I'm going through, and healthy people really don't understand what we really feel. Even if we all were magically cured we are all affected forever we will never view life the same and we will never take the small things for granted and we have a deeper compassion for life. We all share a bond and this website helps more than we'll ever really know alot of us have moments of just giving up and everyone around us seems to not be able to understand and we feel so low and our last thought is to Turn on the PC and login to DINET because someones always here and truly understands and will help pull or push you through that hard time. It helps me so much and I greatly appreciate all of you.

Mae

[Maxine]

Mae,

Sending you big HUGS. This place is great for people who need support. There's always someone who will understand what your going through.

Although I have received great support from some of the folks on this web site, I found couple of great psychologists who were so supportive, they made such a huge difference. They validated it for me, and made it easier for my husband to understand. My husband has always believed me, but I think at first he was scared out of his wits on what was happening. At first I was losing weight really fast, and I ended up with some muscle wasting. I looked sick in the beginning. However, when Dr. Grubb got things stabilized for me, the wellbutrin I was put on the help raise my BP, and help with fatigue also made me gain my weight back, plus 10 pounds. This is when it's hard to get ANYONE to believe how bad you feel inside, when things look just fine on the outside.

My husband has never complained about taking me to doctors out of town, and believe me, we have had to travel a lot. However, there are times I think he holds in the stress of it all, and stores a little resentment. He's had his meltdowns, and we still work hard to keep our relationship strong. Life is difficult enough these days, and you add a rare illness that no one understands, it makes it all the more difficult to cope with the daily struggles.

I hope you both come to a peaceful place with all of this, and your husband can just trust in his love for you that your illness is real. You need his support------especially when you have something so scary, like a lump in your breast.

Have him read these responses. This stuff is REAL, and it's no picnic for us either. I DO know that it's difficult to understand this, and I can understand his frustation. He needs to be a little more tactful in his communications with you on his thoughts. It already hurts enough being this sick.

I have a couple little grandchildren now----two sweet little girls 5 years, and one 16 moths old. If I have them for just a couple hours it wipes me out, so I can not imagine having kids full time--------------it has to be extremely difficult for you on some days. When my son was younger, I did not have really noticable symptoms other then some panic attack type spells. I only had one child, but no family support. I think God saved me from the more serious symptoms until later in life when my son was grown and out of high school. Now he's 28, and has one step daughter, and one of his own. They are the joy and love of our life, but in facing the facts, they are also a LOT of work.

You need a lot of support through this, and you both might benefit from a therapist who is familiar with chronic illness, or some other kind of outside support group, along with the lovely people from this site. I'm just afraid getting support on line will not be enough for you, considering you have two children also. I know my little 16 month old granddaughter is very active, and I can't take my eyes off her for even one minute. I don't usually watch her alone, and they do have full time day care for the girls, but there are times when they need us to help. They try to do it when my husband is home also. They know I can't take care of the 16 month old on my own for more then a couple hours.

Wishing you both peace and happiness.

Maxine :0)