I am not an expert.

Sometimes I feel as if my advice should come with a warning: “do not attempt.” Everyone’s life is different, and unfortunately, I must begin this article by stating that there is no handbook to love. Add to that the factor of a rare disease and oh boy, it’s just a party and no one can say for sure how it will end. I am not an expert, but I do know a few things.

This is what I know.

On my first date with my partner, we sat on the steps of the Lincoln Memorial and talked for hours. He knew nothing of my bone disease and so the conversation was normal first date chatter: work, hobbies, zombies.

That is until I blurted out “did you know I have a bone disease and there’s a possibility I’ll go deaf and end up in a wheelchair?” Clearly, subtlety is not my forte. Luckily, he took it in stride, but as I think back on it, there are a myriad of ways he could have responded, and just as many ways I could have approached the topic that would have been more appropriate.

So how do we handle it?

When you meet someone and you know this could be a long lasting relationship, how in the world do you tell him or her about your rare disease?

As my bull in china shop technique suggests, I myself could use advice. Which is why I turned to Dr. Dawn Wiggins, a licensed family and marriage therapist, to get her thoughts and suggestions.

One of the biggest questions in regard to this topic, at least for me, was how long into the relationship should a rare disease patient approach the topic of disease and diagnosis? (I had a feeling that her answer wouldn’t be “well just ambush them with it on the first date and see how it goes.”)

Instead she replied, “When to discuss your health diagnosis and related issues with someone you are dating depends on what the expectations are for the relationship. If it is a casual dating relationship there is less burden or urgency to disclose early in the relationship. If there is a risk that your disease and symptoms could impact the time you are spending together, you may need to disclose. If your relationship is more serious and there is an expectation of a longer term commitment, it is important to be honest sooner than later.”

Moral of the story: Make sure you aren’t disclosing it to someone who may not stick around anyway. There are relationships that last and those that won’t. Don’t put yourself in the position to be hurt if your partner isn’t going to be there for the long haul anyway.

Now comes the question of “how in the world am I supposed to bring this up?”

My situation came up after I had moved across the country, and my friends weren’t constantly making bone disease jokes. With so few people around me knowing about my disease, it would have been easy to keep it a secret.

I didn’t want to hide anything from them, but I just didn’t want to invite the wrong reaction.

“Take into consideration how your partner likes to receive information that is difficult to process,” warns Wiggins. “Important conversations that bring up emotion are always better to have face-to-face as they foster a more supportive environment.”

Which is great. We want to make our partner comfortable– but there is still anxiety on the part of the rare disease patient. Even if you do everything correctly, there is always a chance the news won’t be received well.

“I recently worked with someone who feared that no one would ever love her or want to date her with her rare disease. Her biggest fear was of being rejected and feeling like a burden for the rest of her life,” says Wiggins. “My experience is that we often make things out to be bigger than they really are.”

And with so few others to compare their relationships to, rare disease patients can often jump to the worst conclusions.

“It is reasonable to anticipate rejection as a possible outcome, it is also reasonable to anticipate acceptance, compassion and questions about your disease and how to support you or what you need! Remember that we can all feel more than one feeling at once and sometimes complex situations include complex feelings and reactions. Be gentle with yourself and your partner.”

Be gentle. The advice is sound, and even though my haphazard approach yielded fair results—I’d probably do good to remember that it may take longer for someone else to process the information that it takes for me to blurt it out.

Give them time. Give them space to process, they will need it. Your partner may come up with all sorts of ideas as to how they can help, so please don’t take offense: this is their way of letting you know they don’t want you to be alone.

Lastly, you may be looking for advice on how to continue your relationship in a healthy way after you and your partner have discussed your life circumstances.

“I recommend that people utilize as many different avenues of support as they can. Your partner may do their own research on your disease. Researching together is a nice way to build on your relationship and learn about each other,” advises Wiggins.

Life with a rare disease is never easy, and sometimes the hardest part is hoping that you’ll find someone who loves you not only despite of it, but also because of it. I apologize to everyone for every broken heart you’ve encountered because someone couldn’t see through the title of “rare disease” to the person you really are.

I may not be an expert, but I know that you are more than a diagnosis and oh so much more than a set of symptoms.

About the Author

Joanna Knower is a Master’s student in Forensic Psychology, as well as an Osteogenesis Imperfecta patient. Joanna lives in Arlington Virginia. In her free time Joanna enjoys being outside and active with friends. To document some of her adventures, she started her own blog, which can be found at https://runjoannarun.wordpress.com/.

About the Expert

Dawn Wiggins is a licensed marriage and family therapist. Her practice is located in Boca Raton, FL. Learn more at www.dawnwigginstherapy.com.

3 thoughts on “The Stigma of Rare Disease: When To Tell Your Date About Your Rare Disease”

  1. Beni says:

    Thank you Joanna for writing this! I so needed to read this and will bookmark this. Oddly enough, I also live in Arlington!

  2. Reagan Smith says:

    Id like advise in dating someone with FOP longterm but there are no articales about it.

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