Patient Bulletins

Dear Husband of Graves’, This letter is to all of us who are or were married to someone with Graves’ disease. It is a letter from my heart as I know of no other way to talk about it. If in some way it speaks to those of you who are now struggling or have struggled with the loneliness, the frustration at the lack of answers, the inability to help the ones you love, having to make major decisions without your partner, or going through the pain of divorce because of a disease very few understand and fewer still can relate to, then it will have been worth exhuming painful memories that time was mercifully putting to rest.

I’ve heard that the divorce rate skyrockets when someone has Graves’ disease. I am not surprised. This disease works to challenge every reason you had for being married and forces you insidiously to get to the bottom line – that a marriage exists only because you are willing to remain committed to your partner, regardless of anything else.

In a lot of ways my wife and I were fortunate; she was diagnosed with Graves’ disease after approximately nine months, at least that is the closest she and I can pin point when she began to first experience the symptoms we now associate with Graves’. During that time, however, while I always knew my wife loved me, frequently who I was married to was not my wife.

One aspect was the mood swings, the unexpected outbursts of anger and accusation, the unexplainable crying. This took the most work for me to deal with emotionally. I know I unintentionally do or say things that irritate her from time to time. But when compared with how we usually handled these issues, the anger of crying was out of proportion to the crime and it came with no warning. Unfortunately, I found myself putting up a wall between us for protection and I hated the estrangement. I became increasingly on guard when with her. I didn’t want to be hurt. We’ve been married many years and she knew me well enough to know how to get in deep with her accusations. I detested the alienation but felt caught in a “Catch 22”– be on guard to mitigate the hurt and loose the closeness in the relationship. Remain open and get hurt. Fortunately the outbursts happened and then quickly dissipated but only recently has “being on guard” begun to melt.

Another was the feelings of impotence; being powerless to change the circumstances regardless of what you did. I’ve always thought my wife was beautiful and while she is attractive physically, her beauty to me has always had little to do with her looks. I enjoy the way she thinks and what she thinks about. When we talk, I learn something. I enjoy watching her meet people. I love hearing her laugh and am frequently in amazement at her ability to laugh regardless of the circumstances. Together we’ve been through some amazing challenges in life. Her indomitable spirit is what got us through them. While she was going through the worst of the disease, Graves’ took all of that away. All I could do was stand by and watch. Nothing I did changed anything.

She had constant headaches from morning to night and over-the-counter medications didn’t help. She hurt every time she blinked her eyes. Her feet were frequently so swollen they wouldn’t fit in her shoes. The puffiness around her eyes and “bug-eyed” appearance was uncomfortable for others to see. My chest ached as I watched people who previously were attracted by her vivacious personality now avoid her altogether or talked with her in a stilted fashion. I watched her withdraw. I was watching the love of my life shrivel and die while being imprisoned in the role of bystander. All I could do was hold her and cry with her when the unrelenting discomfort got to be too much.

Three and one-half years have now gone by and the nightmare has finally come to a close. The disease went through its cycle and stabilized. My wife has now had corrective surgery to repair much of the physical damage of the disease. She still sleeps with a strip of plastic wrap over her eyes to keep them from drying out during the night and her feet are still swollen although less so. Mostly she has returned to living with that special brand of vitality which I so love. She is laughing again.

Where do you turn when your whole world is turned upside down? How do you cope with a situation of changing emotions, many questions, few answers and no idea when it will all end, if ever? While I survived Graves’ disease, I don’t think I took particularly good care of myself emotionally during this time. I mostly did my “guy thing”; I didn’t talk about it to anyone. It didn’t seem appropriate to talk to my wife, my usual confidante. She already had a full plate without my “stuff”. What about talking to other men? Mostly I didn’t. Occasionally I would talk about the topic when I was desperate and someone asked. But mostly, while I found some willing listeners among my friends, those times were never particularly satisfying. They would sympathize but had little or no experience with which to relate. This whole issue of “where does the husband of Graves’ go for help” is one area I now know I would do differently. I would take the time to find other men in the same predicament and I would talk to them. If nothing else, I would know I was not alone.

Sincerely,

David Bos

Jeffersonville, Indiana

Editor’s Note: David is the husband of Bonnie Bos, Indiana and Kentucky State Director.

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