Sharon McClellan Thomason
Survivor’s Guilt With Huntington’s Disease
When it comes to Huntington’s and Juvenile Huntington’s disease, guilt can play a huge factor in the lives of those who test negative and are parents, children and siblings of someone very ill.
It is also a subject that can get thrown in the face of the ones without the illness. Many times, my own spouse and one of our oldest sons have said, “What are YOU depressed about? You are not sick.” This may be true, but watching your whole family die before you, especially knowing you had children who now have it, carries a burden like no other.
Survivor’s guilt. Imagine having three siblings, and you test negative. Imagine all your children and spouse testing positive. Imagine being the only child without HD. The questions, Why me? Why am I the healthy one? Why me? Why do my kids have to suffer with HD/JHD? Why my family? Why my parent? Why my sister? Those thoughts trample through the brain with hypervigilance. Such thoughts can actually cause severe depression. Wait! What? Testing negative can cause depression?
The answer is yes. Survivor’s guilt can cause depression. Thoughts like, “What gives me the right to be happy when my sibling will die from it?” can race through your mind. These are difficult issues that the family has to deal with. Young children with a sibling who gets all the attention because of JHD may even get really jealous of the sick sibling and wish to be sick, too, because they are in the shadows with no normal around.
Other family members may act in what seem to be inappropriate ways, such as withdrawing from the person who is ill. It helps to remember that they may be suffering from survivor’s guilt and cannot handle being around the person who is sick. Learn to forgive them, too.
Taking a break from HD can also be beneficial. It is especially important to arrange alone time with a non-JHD child, away from the sick sibling. Time alone with the well parent is important for the kids whose pa
Things to remember: YOU did not do this on purpose. YOU did not get to choose to test negative. YOU would never have harmed a child intentionally. YOU are a blessing to the ones who are ill. HD/JHD teaches unconditional love, but it can come with a price of overwhelming guilt. Take a deep breath and stop holding yourself hostage with guilt.