Is It Normal to Feel 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-changing medical condition. They have already pictured their whole life with you, and you may worry about how Huntington’s disease could affect both of you in the future.

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 about having Huntington’s disease. 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.

Research published in 2026 also shows that stigma is a real issue for people affected by Huntington’s disease and those at risk of inheriting it. A recent scoping review found that people with HD and those at genetic risk can experience different forms of stigma, although researchers say more work is still needed to understand these experiences fully. (PubMed)

What Does Research Say About Shame and Huntington’s Disease?

Shame is not simply a feeling that you need to “get over.”

People affected by Huntington’s disease may have understandable concerns about how other people will see them, especially because HD can affect movement, thinking, mood, behavior, relationships, and independence. In fact, research involving people at risk for HD has found concerns about stigma and genetic discrimination in relationships, employment, insurance, and other areas of everyday life. (PubMed)

This is important because sometimes what looks like shame from the outside is actually fear.

You may be afraid that your partner will leave you. You may worry about how your children will react. You may be concerned that friends will treat you differently after learning about your diagnosis. You may even decide not to tell people because you want to protect your privacy.

That does not automatically mean you are ashamed of yourself.

One study of people at risk for Huntington’s disease found that some people chose to keep their genetic risk private, while others preferred to be open about it. Both approaches were connected to concerns about stigma and genetic discrimination. Research on Living at Risk for Huntington’s Disease

Shame Can Affect How You Take Care of Yourself

When shame becomes strong, it can change the way you behave.

You might avoid medical appointments because you do not want to talk about your condition. You might stop asking questions because you feel embarrassed. You might withdraw from friends and family because you believe they are judging you.

That is where shame becomes more than an uncomfortable emotion. It can start interfering with the support and medical care you need.

For someone with Huntington’s disease, this matters because care is not limited to treating movement symptoms. Current HD care also considers psychiatric, behavioral, cognitive, swallowing, communication, nutrition, and other problems as they develop. There is no cure for HD at present, so treatment focuses heavily on managing symptoms and maintaining quality of life. (PubMed)

Why Do You Feel Ashamed of Having Huntington’s Disease?

There may not be one simple reason.

You may feel ashamed because you think your diagnosis has changed how other people see you. You may feel guilty because Huntington’s disease is inherited and you are worried about your children. Or you may feel that your diagnosis has taken away the future you had planned for yourself.

Sometimes the feeling comes from watching another family member live through HD.

If you have seen a parent, brother, sister, or another relative struggle with Huntington’s disease, you already know that the condition can change a person’s life. That experience can make the diagnosis feel frightening and deeply personal.

There is also another issue that deserves attention: genetic discrimination.

Research has documented concerns about discrimination among people at risk for HD, including worries involving relationships, employment, insurance, and other parts of everyday life. That means your hesitation about telling everyone may sometimes be a reasonable attempt to protect your privacy rather than simple shame. (PubMed)

You do not have to tell every person in your life about your diagnosis.

The important thing is to have at least a few people you trust and can talk to honestly.

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 life-changing condition like Huntington’s disease can alter a person’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) can help a person with depression or anxiety identify and change unhelpful patterns of thinking and behavior.

A cognitive-behavioral therapist looks at the person’s thoughts, emotions, and behaviors and helps them recognize patterns that may be making the situation harder to deal with.

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

CBT is not a treatment for Huntington’s disease itself. Rather, it can be one part of psychological support when a person is struggling with anxiety, depression, shame, or other emotional difficulties. Psychotherapy is also included among evidence-based approaches used for a range of psychiatric conditions. (PubMed)

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

A mental health professional can help you decide whether CBT is appropriate for your particular situation. If you use an online mental health assessment, treat it as a starting point rather than a diagnosis.

Socialize With Other People Affected by Huntington’s Disease

Being socially isolated and constantly wallowing in your misery can make an already difficult situation feel even worse.

I would not tell someone with Huntington’s disease to simply “think positive.” That is not realistic. Instead, I would encourage you to stay connected with people who understand what you are going through.

This could mean talking with another person affected by HD, joining a support group, speaking with a counselor, or staying connected with trusted family members.

Research involving HD caregivers has found that taboo and shame, loneliness, concerns about heredity and children, and a lack of HD awareness can all make caregiving more difficult. The same research identified social networks, professional support, openness, and talking about problems early as helpful factors. (PubMed)

Take Suicidal Thoughts Seriously

I want to be especially careful with this point.

Older research found that suicide accounted for 7.3% of reported deaths among 2,793 people listed in the National Huntington’s Disease Research Roster. However, that study is from 1993 and should not be presented as the current suicide rate for everyone with HD. (PubMed Central (PMC))

More recent research continues to show that suicide and suicidal thoughts are important concerns in Huntington’s disease. A global prospective study found a higher incidence of suicide and suicide attempts among people with Huntington’s disease genetic expansion compared with people without the expansion. (PubMed)

So, if you are experiencing thoughts about suicide, hopelessness, or feeling that life is no longer worth living, please do not handle it alone.

Tell someone you trust and contact a mental health professional or your Huntington’s disease care team. In the United States, you can also call or text 988 for immediate crisis support. If you are in immediate danger, call 911 or go to the nearest emergency department.

Practice Self-Reflection

Getting diagnosed with Huntington’s disease can mean 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 can lead to major disappointment. Huntington’s disease patients cannot afford to be ignorant.

This is where a caregiver’s role can come into play. Post-diagnosis, the patient’s mind may be occupied with worries about finances, health care, social responsibilities, relationships, and the future. A caregiver can step in and help manage some of these responsibilities until the situation becomes clearer.

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 understand what is actually bothering you.

For example, you may think, “Everyone is going to look at me differently now.”

Stop and ask yourself whether you know that this is true, or whether you are predicting how other people will react.

That small distinction can be important.

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 may help you question the distorted thoughts you are having about what other people think about you.

Do You Have to Tell Everyone About Your Huntington’s Disease?

No.

This is one area where I would not put pressure on you to disclose your diagnosis simply because someone else thinks you should.

You have a right to make thoughtful decisions about who receives your medical information.

At the same time, keeping everything secret can become exhausting. If you are constantly worried about being discovered, hiding your condition can become another source of stress.

Start with the people who are most important to your life.

For example, you may choose to tell your spouse first. You may then tell a close family member or trusted friend. You do not have to make one announcement to everyone at once.

If you are considering predictive genetic testing, genetic counseling can also help you think through the emotional, family, and practical consequences before and after testing. The Huntington’s Disease Society of America recommends working with a trained genetic counselor when considering HD genetic testing. Huntington’s Disease Society of America: Genetic Testing and Your Rights

What Should a Caregiver Do If Someone With HD Feels Ashamed?

Do not make the person feel guilty for feeling ashamed.

Saying “You have nothing to be ashamed of” may be true, but it does not always make the feeling disappear.

Instead, listen.

Ask what they are worried other people will think. Ask whether they are afraid of losing their relationship, job, independence, privacy, or social life. Sometimes the answer will tell you what kind of help they actually need.

A caregiver can also help the person stay connected with the medical team and mental health support when needed.

Huntington’s disease care is increasingly understood as multidisciplinary because the condition affects several areas of a person’s life. Neurologists, psychiatrists, psychologists, physical therapists, occupational therapists, speech and language therapists, dietitians, social workers, and other professionals may all have a role depending on the person’s needs. (PubMed)

My Final Thoughts

Being at ease with yourself and not caring what other people think about your condition are two things pivotal to living a normal life.

But I would make one small change to that idea.

You do not have to stop caring what other people think overnight.

You simply need to stop allowing other people’s opinions to decide your worth.

Huntington’s disease is something you have to live with. It is not something that defines your value as a person.

You did not choose the HD gene. You did not cause the disease by doing something wrong. And you do not owe anyone shame because you were diagnosed with a genetic disorder.

By taking responsibility for your situation, you can stop being a victim of circumstance and become more in charge of the things you can control.