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How do I convince my husband to get genetic testing?

answered 12:43 PM EST, Wed February 01, 2012
My husbands mother was just diagnosed with Huntington’s disease. We have been trying to have children but I am not yet pregnant. My husband is just devastated by the news. He is very close with his mother and now we have to live with a 50% chance that he will get the disease too. He says he can’t live with a positive test result and says he won’t get tested. I want to convince him to get tested because unless he does I don’t think we can have children together (since they could get it too) and how will we live with this giant uncertainty over our heads for the next 20 years? It will ruin our marriage I know it. How can I convince him that the worst part is just the not knowing. If we know what’s coming, no matter what that is, we can plan for it and get on with our lives. I think that believing you are going to get this horrible disease when maybe you are not is about the worst way to live through your life.

Art Matthews Says...

What we have here is a conflict between the two of you based on opposing views of what would be best. Your husband, who has just learned that his mother will die of a progressive, degenerative disease, also faces the fact that he may have the same disease. Since you mentioned that his mother was "just diagnosed," I'm thinking that your husband may not have had time to process what this means to him about his relationship with his mother or the reality of what will happen in his life. While you can't imagine anything worse than not knowing, he can't even fathom what all this means.

My suggestion is to allow him to take the time he needs to process this fully. Is there some sort of rush? He is probably already anticipating the loss of his mother and therefore entering the process of grief. This will be a complicated grief because of the circumstances. I can relate very well, having stood by my mother as she died a long, slow death from dementia. I can also relate to your husband's situation because the cause of my mother's dementia could be hereditary. Does one want to know how they are going to die and what the circumstances will be? Not always. Of course medical research is always looking for new and better treatments, so who is to say that things will be the same? Hard to know.

Having a test like this done is very controversial from a medical ethics and legal standpoint. Some have suggested it could even have the effect of putting those people who test positive for an inheritable disease in peril of not being able to afford quality health insurance.

What we do know is that applying pressure on your husband to get him to get tested isn't working. It could even backfire on you and cause a rift in your relationship that will be hard to repair. Give him some space and time. Let him deal with one thing and then the other. Do your own research and keep it to yourself. Let him come talk to you and be non-judgmental and supportive. Talk about how to plan for his mother's needs and take the tack financially as though he has already tested positive and amp up your savings and investments. That way if he develops the disorder, you will have prepared.

Even if he did have the gene, we don't know what other things might befall him or you for that matter. Neither of you really needs to know his status in order to start your financial preparation for an uncertain future. If you feel your biological clock ticking, approach your husband about considering adoption or insemination from a donor who does not have this in their medical history. If you value your marriage, I would strongly advise against gathering some sort of sample under false pretenses and having it tested against his will. He needs to know that he can trust you, even when you disagree with his decisions. If the two of you haven't already, plan to meet with a genetic counselor before deciding to become pregnant.

Seek out support for yourself for your own fears and anxiety about the future. Look for a local or online support group for spouses of people with Huntington's. Talk to your pastor, priest, rabbi or other spiritual leaders depending on your faith. And as always, consider counseling so that your anxiety doesn't get in the way of your communication and relationship with your husband.

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Page last updated Feb 01, 2012

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