ashamed of having huntington's disease

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

You are not alone if you feel ashamed of having Huntington’s disease.

Being diagnosed with Huntington’s disease is one of the most frightful things that can ever happen to a person.

Anyone who knows the pain of a neurodegenerative disease will tell you that you are going to have far more difficult problems than just feeling shy.

Having a terminal disease can seclude you from other healthy people.

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

The straight forward answer to this question is “yes”. I think most of the shame comes from knowing that you are the one on this planet who cannot have kids at any cost.

Even if one of the parents have the HD gene, the chances of their child inheriting the disease become 50 percent.

Even with everyone in your community supporting and comforting you, you will feel inferior compared to their healthy families.

Your thoughts will be your own enemy until you accept your ill fate and come to peace with yourself.

Understand that no one deliberately wants you to think less of yourself, you yourself have made these stories in your head that are making you feel shy.

Let’s discuss 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 arisen by 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 patients 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 constant wallowing in your own 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) of this study committed suicide.

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

Seek help from counselors or nearest clinic specializing in neurodegenerative diseases and live life at 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 patient cannot afford to be ignorant.

This is where a caregivers 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 patients life until the storm is settled.

Self-reflection is an evaluation of one’s own thoughts, emotions, and feeling. It’s not easy for a suffering person to witness his own 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.[3]

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 might be 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.

Conclusion :

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.

You may also be interested in reading a post on 25 Inspirational Huntington’s Disease Quotes.

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