The decision to tell someone about your Huntington’s Disease is an extremely personal one. Almost as personal as the decision to be tested in the first place. This can be even more apparent during the in-between years when you could be years away from any signs of the disease or decline in your health.

It’s quite possible that you decide to tell nobody outside of your immediate family if even them.

That’s okay. Like I said, it’s an extremely personal decision that is yours to make.

Yours.

It could be that you value privacy and would just rather not share your HD diagnosis with any more people than completely necessary.

Me? I shared my diagnosis on Facebook. With everyone.

Here’s the post from July 12, 2015:

Yup, shared with everyone. And no, I haven’t walked across Canada. Yet.

My point is (and you’ll see this is a recurring theme in this series), everyone assesses their situation through their own lens. People are completely free to act in whatever way they choose.

If you want to tell the world? That’s fine.

If you choose to keep your HD a secret, that’s fine as well.

There are likely innumerous factors that may influence your decision about sharing your diagnosis versus keeping it secret. Genetic and workplace discrimination may be one. Obtaining health and life insurance may be another.

Countless factors. Too many to be addressed in one article if it was even possible to identify them all.

The following touches on some of the more common issues and is intended to help facilitate your own thinking and reflection on what’s important for you.

Ultimately, it’s always recommended to speak with a genetic counselor about these concerns as the results of undergoing predictive testing and sharing the results can have implications reaching far and wide.

That’s what the genetic counselors are there for and why it’s often a prerequisite before clinics will even test you for Huntington’s Disease.

Also, the scope of this article is not to provide legal advice and it should not be considered so. If you require specific legal advice about something that you consider possible discrimination based on your HD predictive testing, please contact a legal office for proper guidance.

Work

Many in-betweeners will decide not to share their Huntington’s Disease diagnosis with their places of employment. There’s really no need to if you’re happily working away and are exhibiting no signs of the disease that may be interfering with your work or jeopardizing the safety of you or a third party.

You have every right to keep your HD a secret. And, you have every right to tell your employer if that’s what you decide you want to do.

Your particular situation will influence your decision greatly.

If you’re a young in-betweener, just starting your career with hopes of climbing that corporate ladder, you may be more apt to keep your HD to yourself. If you are in your forties, comfortable with where you are in life and with all your insurance and healthcare benefits set up and ready to go, then you may be more comfortable sharing.

Regardless of what choices you make, there are laws in most developed countries that prevent an employer from discriminating against someone in the workplace based on their positive HD testing. Doing so would be considered genetic discrimination.

Genetic discrimination

Genetic discrimination is defined as occurring:

when people are treated differently by their employer or insurance company because they have a gene mutation that causes or increases the risk of an inherited disorder. (source)

As I mentioned above, most countries have laws in place to make this type of discrimination illegal, and for good reasons. Insurance companies would no doubt raise your premiums if they knew you were likely to develop some debilitating condition later in life. These laws prevent them from using, or requiring, genetic information when deciding on a person’s insurance coverage.

Below are two examples of laws in place to prevent this type of discrimination.

Genetic Information Nondiscrimination Act (GINA)

In the United States, there is a federal law called the Genetic Information Nondiscrimination Act (GINA). Not only does GINA prevent insurance companies from using your genetic predictive testing against you, but it also:

makes it illegal for employers to use a person’s genetic information when making decisions about hiring, promotion, and several other terms of employment. (source)

Genetic Non-Discrimination Act (GNA)

Canada, has been lagging when it comes to putting anti genetic discrimination laws into place. Only as of 2017 has the Genetic Non-Discrimination Act (GNA) been made law, but there continues to be debate about what the final law will look like and it’s not a completely done deal as of the time this article was written. (source)

Family and friends

I learned very quickly, once I entered the in-between years, that there was no greater source of support than my family and friends.

They are my foundation.

They knock sense into me when I’m blabbering on about how I have noticed 27 new Huntington’s Disease related symptoms in myself.

They will be there in the future to hold me up, keep me safe and make my decisions when I’m no longer able to.

Again, who you choose to share your HD diagnosis with is one hundred percent your choice, but if there’s one thing that I can say, it’s this: having a loved one (family or friend) with whom you can talk about your feelings and thoughts and fears, can be key when it comes to maintaining a positive and healthy mindset as you move through these in-between years.

We’ve all heard the phrase:

don’t keep things all bottled up inside, it’s not healthy!

There’s a lot of truth to that old cliche!

Dating

Dating during the in-between years can be, without question, a complicated and often stressful undertaking.

Determining the right time to tell someone about your Huntington’s Disease can be difficult.

Should you tell them on the first date?

Should you wait until the feelings are stronger?

The best answer to these questions is likely this: not too soon and not too late. How’s that for vague?

Revealing your in-betweener status to a potential partner on the first date or so, may instantly build a wall between the two of you getting to know each other at all. They may decide not to move forward with getting to know more about you because they’ve run head on into this wall and that will put an end to it.

Yes, you will need to tell them. But, give it some time. Learn about each other.

I read somewhere that, yes, Huntington’s Disease is a big part of our in-betweener life, but it’s one part of who we are.

That’s important to remember.

Sure, you have HD. But you’re also a painter. You like to surf. Your dream is to travel to Nepal. Your favorite color is blue. You can breakdance. You speak Spanish.

There is so much about you, that is more than the HD.

Let any potential mates see and learn about all those awesome things about you. As you learn about them.

There’s no rules about dating during these in-between years. You’ll likely know when it’s the right time to share your Huntington’s Disease when the moment arrives.

Children

Introducing your Huntington’s Disease status to your children is another experience that many in-betweeners are dreading; myself included.

For children, learning about HD in the family will be undoubtedly overwhelming, for so many reasons.

The information given to them, and when, will of course depend on the age of the child.

Perhaps as an in-betweener, you can remember yourself being told about your family’s Huntington’s Disease history. Were you a teenager? Younger?

Drawing upon that experience may be helpful as you plan to introduce the HD to your children.

Keeping the information age appropriate is key. This from the Huntington’s Disease Society of America’s resource booklet entitled “Talking With Kids”:

Giving your child information about HD – the right amount at the right age – will give him or her tools to deal with the changes in the family while helping him or her to feel secure and live positively.

This above mentioned resource is one of many fantastic sources of information available for us in-betweeners. Many can be found on your association’s website and are written by some very smart professionals trained in complex areas, like introducing Huntington’s Disease to children.

Here are some links to get you started: