Is it normal to be ashamed of having Huntington’s Disease?

Should you feel ashamed for having a genetic disorder? There’s nothing to be ashamed of having been diagnosed with Huntington’s disease, but yes, I would understand if you are hesitating to reveal it to your loved ones.   

It is easy to confuse hesitancy (or unwillingness) with feeling ashamed. 

Some people find out about their condition after they get engaged or marry someone healthy. They feel like they have let the other person down, and they feel difficult to bring up the topic.

Letting your healthy partner know about your condition can be a daunting task. They have committed their life to you, and now you have a life-threatening medical condition. They have already pictured their whole life with you, but you won’t be there with them in the golden years of their life.   

I think it is more about letting people down who had expectations from you. 

People close to you will have expectations from you (as you have from them), but there’s nothing that can be done in this situation. You and others close to you will have to accept the situation as is.  It’s not your fault that you have the HD gene. 

What does the research say about health-related shame?

In this study, the researchers wanted to understand how feeling ashamed can affect our health and how we behave when it comes to our health. They believe that shame is a big deal in healthcare, but not many people are talking about it or studying it.

So, they made two important points in their research. First, they said that feeling ashamed can really mess with our health and how we take care of ourselves.

They gave four reasons why this happens:

Acute Shame Avoidance Behavior

Imagine you feel ashamed about your body and don’t want others to see it. So, you avoid going to the doctor even when you’re not feeling well because you’re too embarrassed. That’s one way shame affects health.

Chronic Shame Health-Related Behaviors

This is when you feel bad about yourself all the time because of your health. For example, if you have a disease and feel ashamed because of it, you might not take your medicine like you should. That’s not good for your health.

Stigma and Social Status Threat

Sometimes, when you’re sick or not feeling well, people might treat you differently or look down on you. This can make you feel even more ashamed, and it’s not good for your health.

Biological Mechanisms

Shame can even mess with your body on the inside. It can affect things like your immune system, making it harder for your body to fight off illnesses.

The second big point they made is that shame is so sneaky and powerful that we need to pay more attention to it when we talk about health. They think it’s so important that it should be considered a big factor in how healthy we are.

They gave three reasons why:

It’s a Big Deal in Health: Shame is not just a little thing; it’s a big deal in how we take care of ourselves and how we feel when we’re sick.

It’s Everywhere: Shame is everywhere in healthcare, but we don’t always notice it. It’s important to think about how shame affects people’s health.

We Need to Study It: The researchers think we should study shame more so we can understand it better and help people who feel ashamed about their health.

In the end, they suggested that we should do more research to learn even more about how shame affects our health. So, the next time you feel embarrassed about going to the doctor or taking care of your health, remember that it’s a big deal, and it’s something we should talk about more.

Here are some of the ways you can deal with the social pressure that makes you feel ashamed of having Huntington’s Disease

Cognitive-behavioral therapy (CBT)

The pain arising from suffering from a mortal condition like Huntington’s disease can alter the patient’s thoughts and behaviors.

It can lead them to think negative thoughts and accept a distorted version of reality as truth.

Cognitive-behavioral therapy (CBT) heals a person suffering from depression or anxiety by changing his dysfunctional emotions, behaviors, and thoughts.

A Cognitive-behavioral therapist understands the internal mental blueprint of the patient and notes down their faulty beliefs, destructive behaviors, and repetitive emotional patterns.

After a thorough evaluation of the patient’s cognitive and behavioral processes, the therapist then works on changing their unrealistic or unhelpful thoughts with the tools used in Cognitive-behavioral therapy (CBT). [1]

How do you know whether to go for Cognitive-behavioral therapy (CBT) or not?

Take this Mental Health Assessment Test by Psychology Today.

Socialize with other HD patients

Being socially isolated and constantly wallowing in your misery can lead to suicidal thoughts. [2]

A study by Indiana University School of Medicine, USA suggests that suicide is quite common in some families with HD. Nearly 8 percent of participants(HD patients) in this study committed suicide.

HD patients need support and understanding from counselors. It creates a feeling of well-being in their body and mind.

Seek help from counselors or the nearest clinic specializing in neurodegenerative diseases and live life to the fullest.

Practice Self Reflection

Getting diagnosed with Huntington’s disease implies a complete disruption of future life plans and goals.

Carrying on with already existing plans without performing a complete overhaul of the patient’s life will lead to major disappointment. Huntington’s disease patients cannot afford to be ignorant.

This is where a caregiver’s role comes into play. Post-diagnosis, the patient’s mind will be occupied with worries about their finances, health care, social responsibilities, etc. A caregiver has to step in and manage the HD patient’s life until the storm is settled.

Self-reflection is an evaluation of one’s own thoughts, emotions, and feelings. It’s not easy for a suffering person to witness his inner being. Introspection can bring more pain and open up old wounds.

But with enough practice and persistence, it’s possible to self-reflect and reap the benefits of it.

It improves self-awareness, confidence in social situations, memory power, productivity at work, etc.

How to practice Self-Reflection the easy way?

Start with taking short breaks throughout the day to think about actions. Ask yourself questions like :  

  • What am I feeling?
  • Why am I feeling like that?
  • Is it taking me where I want to go in life?
  • And What can I do to make my life better at this moment?

This will give you a sense of control over yourself and self-correct the distorted thoughts you are having about what other people think about you.


Being at ease with yourself and not caring what other people think about your condition are two things pivotal to living a normal life. By taking responsibility for your situation, you will stop being a victim of circumstance and become in charge of yourself.

I hope after reading this post, you will not be ashamed of having Huntington’s Disease anymore.

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