Should I Marry Someone With Huntington’s Disease?
Picture yourself five years from now— having to take care of a person who is severely disabled, you can’t have children, you will have to pay their medical bills and take them to a doctor regularly, etc— are you willing to go through all this trouble?
I know I have highlighted a lot of negatives of marrying someone with HD, but my intention here is to make you aware of the pitfalls of making such a strange decision. I don’t want you to marry this person just for the sake of it.
I don’t want you to resent your decision later. I don’t want you to have bitter feelings towards this person or yourself later in life.
I am— in no way— against marrying a person with HD or any other genetic disorder, for that matter. But one must think about the ramifications before tying the knot.
You can still love them, help them, and take care of them without marrying them.
Keep in mind that Huntington’s disease is a progressive brain disorder, the person will begin to show more intense symptoms as the disease progresses. If you think your loved one’s condition is manageable at this moment— think again— it is going to get worse, leaving you to deal with all the issues that they will face daily.
You need to think this through. Being married does not only mean being together for the rest of your life but also means sharing responsibility with your partner.
Factors you need to consider before you marry a person with Huntington’s disease
1. Huntington’s disease alters the mind, body, and emotions of the patient.
A person with Huntington’s disease starts showing noticeable symptoms in the early stages but they don’t interfere much with their day-to-day life. Once they are in the middle stages of the disease, that’s when everything starts falling apart and their relationships start to crumble.
It becomes difficult for a caregiver to carry on tolerating the drama created by the Huntington’s disease patient on a day-to-day basis. At some stage, they will need the help of a professional nurse, someone who is trained in handling people with cognitive decline and does it daily.
2. Are you okay with not having kids?
Every child you will have with this person will have a 50/50 chance of inheriting Huntington’s disease. Yes, none of your children may inherit Huntington’s disease, but the odds are less and it’s too risky.
Most people with HD prefer not to have children. Adoption is a great option if you are sure of raising the adopted child as your own and have the financial means for that. [1]
3. Being alone after your partner is no more
People with defective genes usually die 15 to 20 years after onset. You probably will have very little time left with the person if you marry them now or shortly. If you are exclusive to this person, after their death, you will have to spend your life alone.
4. Your social life will get severely affected if you marry a person with Huntington’s disease.
A large part of being married is spending time building relationships with your in-laws and other like-minded couples. A married couple stays connected with society and builds collective self-esteem by socializing with others.
A Huntington’s disease patient in the mid and later stages of the disease requires assistance from their caregiver for performing day-to-day tasks. How do you think your friends are going to cope with your partner? No one wants to spend their time with a couple with one person fully dependent on the other. [2]
5. Do they have an ulterior motive?
No one likes to be manipulated or used by someone they trust and love. Although, if you step in the shoes of a Huntington’s disease patient, you will begin to see how difficult it is for them to do well in the modern dating world.
The person you love may be using you. They may look at you as a future caregiver. They may not say it or mention it in their conversations, but they secretly want you to be their future caregiver.
I am not asking you to needlessly doubt or question your loved one. I am simply making you aware of a possibility. If you think the person you love is using you, I suggest talking to them calmly in a non-accusatory tone of voice.
6. Positives in marrying someone you deeply love.
That being said, there are a few positives in marrying a person you deeply and unconditionally love.
Even if your partner has 10 more years to live, you are together and the time you spend will be remembered for the rest of your life.
In this materialistic world, you get a taste of what it is to do something truly wonderful and make a decision that is selfless and for the good of others.
Real-life examples of people who married someone with Huntington’s disease
Michael Dreikorn marries Darlene who got diagnosed with Huntington’s disease
Michael Dreikorn, Ed.D. is an aviation and defense expert from Bokeelia, FL. He and his now wife, Darlene have been together for 18 years. They bonded over their love for adventure and travel. In 2018, Darlene was diagnosed with the Huntington’s gene, she was beginning to show the symptoms as her behavior changed.
She was prepared to end her 18-year-old relationship with Michael— she thought Michael would leave her knowing she had HD. But guess what? Upon discovering Darlene’s health condition, Michael chose to marry her inside of breaking up. The couple shared their heart-touching account on WinkNews.
Matt Weeks tied the knot with Sara Smouther in July 2022
There are instances where both parties involved in a marriage have Huntington’s genes. Matt and Sara both had the Huntington’s gene when they got married in July 2022. Sadly, Matt is no more with us. He passed away in the presence of Sara and other family members.
Summary
Instead of making your decision based on emotions, I want you to look at the facts.
Living with a Huntington’s disease patient is only going to get harder. Symptoms are going to get worse and medical bills will rise.
But I would understand if you still want to marry this person. You can always cancel your plan if you are having second thoughts before marriage.
It’s always good to be transparent with the person you marry, so have a conversation with them, and let them know your concerns.
