Surviving Huntington’s disease – being gene negative

This is normal. I am normal and I am not alone. WE are not alone. What we are feeling or going through, someone else is too. Your family is effed up? Mine too. Huntington’s Disease did not disappear after I got a negative gene test. I did not suddenly become free. I am a survivor, WE are survivors, but the disease is always with us. For a lifetime we lived “at risk”. Now we survive as our families disappear. When we draw our family tree, whole branches are gone, and other branches are covered in red. We are alone on a tree that is disappearing. Huntington’s disease is always there.

All of these negative feelings, the sadness, anger guilt, how do I stop feeling them? Everything, everyone, says we need to face the grief, to go through it. So I attended an online grief and bereavement conference. There I was less alone. I felt connected. I could share what I was feeling and hear what others felt. I think this was a pivotal point for me. I learned about the amazing support networks for families dealing with cancer. I decided to reach out to the Huntington’s Disease Society. Maybe they can help me. Maybe I can find a similar support network. I have my people – my best friends, my mom, but there is still something missing.

I have often been called resilient, amazing, wonderful. All of these nice things. That is not really how I feel. I am not always optimistic. And now? Now I feel hopeless, sad, alone. Tired of pretending. Tired of hiding.

Ideally, I wanted to find a support group for at risk or gene negative people who were also having difficulties with grief and bereavement. There was nothing like that available, but there was a caregiver support group. I play less of a caregiver role now and at first I was worried about joining, about being an imposter. However I decided to give it a try. Every story is different and yet every story is the same. We all weave our stories with the same thread. We are connected. We are all facing something and we can all understand what each other are going through. Everyone has been supportive. I think it is ok that I am there for grief.

I finally found a psychologist. A difficult feat during covid. My support network is growing. Lately I have noticed a change in my mental health. I am less sad.

Anger. Another consuming and awful feeling. It can be so strong. Sometimes it sits right out front, obvious and ugly. Other times it lies silently beneath the surface, quietly inserting itself into my daily life. My family members used to talk about how angry I was and how hard it was to be around me. I have heard other people with similar stories. I once met someone with Huntington’s disease who had stopped talking to their gene negative sibling because of the anger issues that sibling had. If survivor’s guilt is ever defined in terms of what Huntington’s survivors feel, anger should be in the definition. A good definition might be “severe guilt, anger, sadness and feelings of being overwhelmed, leading to angry outbursts, an inability to cope, overall irritability, an inability to smile, a negative attitude, anxiety and depression. May lead to family members not wanting to be around the survivor.” I think it would take a pretty extraordinary person to not feel or be one, many, or all of those things. I think I was all of them at some point and at the worst time, I was all of them at the same time. For siblings and probably other family members, it is not really freeing to be gene negative while your family members are gene positive. My partner recently said to me that he had no idea how much Huntington’s would be a part of our lives. The disease did not go away after I got a negative test result. It is always there. It was always there in the past and will always be part of our future.

The effects of the disease on our family have been profound. The progression of the disease is somewhat unique. It can affect a person’s cognitive abilities, make them less inhibited and more prone to risky behaviors as well as moody or aggressive. These symptoms may show up before any physical symptoms and before anyone actually realizes there is something wrong. These hidden or less apparent symptoms can lead to difficulties with education, keeping a job, maintaining a relationship or friendships, paying for or maintaining a home, taking care of a family, driving, decision making….. all of the things we take for granted. It is some of these very things that made us realize my sister had the disease. I think there are a lot of families that experience problems with irresponsible behaviors, unemployment and apathy, drug use and addiction, accidental pregnancy, homelessness and so on. Although these are all normal problems that many families face, they are amplified in families with the gene. People do not grow out of these behaviors, things just get worse. These things can really screw up families. When people who have HD in their family say that their family was or is effed up, I think that in many cases that is probably because of the part that HD plays that we do not see.

Even just the loss that we experience can change our behaviors. Just the other day I was in a conversation about anxiety and control in relationships with some friends. It hit me just how much these traits play a role in my life. I worry a lot about losing the people I love. This worry has been with me for as long as I can remember. As a young kid I remember I would get quite upset if I got mad at someone and they left, that they would die thinking I hated them or was mad at them. I am not sure where my fear of death came from so early. My best guess is that it came from losing aunts and uncles at such a young age. We were close to one particular aunt, uncle and cousins. My uncle died of cancer and then my aunt started to visibly decline from Huntington’s. Eventually she died and so did my two cousins. We lost that whole family. Dealing with a lot of loss affects us beyond grief and anger, and probably differently when we experience it at different ages. I think for me, it has resulted in anxiety and control issues. I am grateful to recognize this now so that I can stop it.

I spend a lot of time searching for a definition or cause for my depression. I think that I want to know that this is a normal response to a certain set of events that took place in my life. I wonder if others do that too. I think so. I know there will never be an answer to what I search for or a simple solution to how I feel. If a definition is what I am looking for, I have many. Yet I still search.

Resources:

Lumara society https://lumarasociety.org – The grief and bereavement conference and the community were amazing and I highly recommend it.

Connecting to the Huntington’s Society of Canada: https://www.huntingtonsociety.ca/

A list of the Family Services Team https://www.huntingtonsociety.ca/family-services-team-list/

A map of the Family Services Team https://www.huntingtonsociety.ca/family-services-team/

Feel free to discuss in the comments or to send me a private message as well.