There are so many drawbacks to having a disease that people don’t talk about; a disease that most people know nothing about. There is the blank stares you get when you tell somebody about it. Some people just say “ok” in the way that you know they have no clue what you are talking about. Anybody that has had any involvement with Huntington’s Disease knows these responses. We have felt it when we were first made aware of this dreadful disease and still see it when talk to people about it.
Because a disease is not talked about, a lot of the problems associated with it are not talked about either. However, not talking about it does not make it go away; talking about it does not mean that it is going to happen, either. Huntington’s Disease has to be talked about so that people understand the illness. It has to be discussed so that others know a lot of the problems that can be associated with the disease. These problems are more than just physical deterioration of the body. Huntington’s Disease is neurological disease. IT AFFECTS YOUR BRAIN. That affect can be mental, physical or emotional and the effects can be varied from one person to the next. The physical signs are obvious. The mental and emotional ones, though, are often unnoticeable. Those are the ones that we as caregivers need to look out for. One in particular that needs to be watched out of is depression.
Depression is real and one of those taboo subjects that most people don’t talk about. As a society, we have all been taught that we should “suck it up and deal”. We are told to put on a happy face and not let the world see what is tearing us up inside. So, that is what we all do. Most of us have no real idea that the person in the cubicle next to us at work is struggling with depression. Do we really want to know? Probably not. We are all to engrossed in our own lives and our own issues to honestly care what the person next to us is dealing with. Plus, when society teaches us not to talk about the depression, it increases the non-caring factor. People with Huntington's Disease often suffer from varying stages of depression and it can have some very unfortunate results.
Huntington’s Disease has been broken in to three stages. Stage one is before the diagnosis or right after the diagnosis. This is when a person is often dealing with the early onset of symptoms and doesn’t fully understand what is wrong. Stage two is after diagnosis when a person is begin to lose some independence. This is usually the stage where the diagnosed person can no longer work or drive because either physical or cognitive limit their ability to do so. Stage three is the advanced stage. This is where the person can no longer take care of themselves in any capacity and must rely on others. Depression most often occurs during stages 1 and 2.
In stage one, before diagnosis, depression is felt because of the unknown. You know that something is wrong but nobody can figure out what it is. It can make you wonder if maybe you are just crazy in the head. Especially when you are not aware of the condition existing in your family. As a person who went through numerous physical ailments for several years before the official diagnosis of a rare form of hereditary arthritis, I can certainly relate to that. It is tough when you know that something is going on inside of you that is not “normal” but nobody can figure it out. It can easily lead to depression. On the flip side, if you know that you have a family history of HD and are experiencing some of the early symptoms, it is very easy to get depressed before the diagnosis. You are positive you have the disease because of the symptoms you have. The depressed feelings can increase once the positive diagnosis is confirmed. Interestingly, it is not uncommon for a person with a negative result to have increased feeling of depression, too. Especially if you do not have the disease but a sibling does.
Stage two depression comes in when a person reaches a point where they can no longer do something that have always been able to do. This usually begins with the inability to drive or continue holding down a job that you love. Being unable to do something that you have been able to do your entire life is hard. Reaching the point where you have to dependent on somebody else to take you two miles down the road to go grocery shopping is hard. It can easily lead to depression because you feel like life as you know it is no longer in your control.
Depression can often lead to suicidal thoughts. Suicide is not uncommon in either one of these stages. In fact, it is believed that at least half of people diagnosed with HD have had a suicidal thought at some point in the journey through the disease. These thoughts are often not shared with anybody. The feelings can be kept inside. The most common reasons for not sharing these feelings are the fear of frightening loved ones by sharing these thoughts, fear that nobody will take them seriously, or even the feeling that suicide is an acceptable alternative to dealing with the inevitable future. Many people that have a mental illness of any kind also don’t want to talk about it because there is a stigma that is associated with mental illness that cause someone to feel ashamed of what is wrong with them. Instead of talking about it or seeking help for these feelings, a person choose to end their life.
As a caregiver, you need to understand that not talking about it will not make it go away. And just because you talk about it the does not mean that it is going to happen. As a caregiver, you need to understand that people want to talk about the turmoil inside them but don’t because they think nobody cares. As a caregiver, you need let the person know that it is okay to have such thoughts. Help them seek help from a therapist or psychologist to properly deal with the issues. Above all else, let the person know that you love them and want to have them in your life regardless of what state they are in. One suggestion that I read is to say something every day that makes you grateful to have them in your life. Another one is to talk to the person about that suicide would affect you and those around you. Let them know that it will be harder for you to live knowing they chose to take their own life instead letting the disease run its course.
If you think someone you know is considering suicide for any reason, get help. You can call theNational Suicide Hotline at 1-800-273-TALK. You can also visit HDReach.Org for more information about depression and suicide in people with Huntington’s Disease.
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