Beautiful, Bachelorette, Bleeder: When to Disclose a Diagnosis

Beautiful, Bachelorette, Bleeder: When to Disclose a Diagnosis

You’ve been talking to prospective Mr. Wonderful for a few weeks now. You have a lot in common, and if he looks anything like his profile picture, you know he’s going to be some significant eye candy. You have started to flirt through email. You might even be falling for him.

Then he asks to meet in person.

You panic. What are you going to do? How close do you let him get before you tell him your secret? When is the right time to disclose?

Disclosing disability

Everyone handles disclosure differently. There are many ways to share the realities of living with hemophilia. At some point in a relationship, hemophilia is going to come up, but the decision of when to share is a very individual process.

There are different philosophies about the timing of disclosure.

The flag-waver

Some people want to be upfront about their hemophilia. Their dating profile may say “single with hemophilia and a smile.” Seriously, though, there are people who want a prospective partner to know about their hemophilia from the beginning. There is value to this philosophy. If the person doesn’t want to be with someone who has hemophilia, it can save time and heartache.

Second or third base

Some people want to see how a relationship plays out before they disclose. They may wait until the relationship progresses before sharing their medical reality. Some women have told me they want to wait for signs of chemistry, but need to reveal their hemophilia before a relationship gets too intimate. Intimacy can involve bleeding, so they want to make sure the person they’re dating knows ahead of time.

Commitment confessions

I’ve known women who do not want to share their diagnosis until they are deeper in the relationship. They reveal their hemophilia as a relationship is defined. They disclose when their relationship gets to the point where they are officially a couple.

Sharing takes courage

It can be scary to share with your diagnosis with a potential partner. You may fear rejection, but do you want to be with someone who doesn’t accept all of you, including your hemophilia? Sharing your diagnosis makes you vulnerable, but it is also a wonderful opportunity to understand the strength of the relationship you are creating.

Lack of support

I was once with someone who did not understand my hemophilia. When I told them I thought I was bleeding, I was called a “hypochondriac,” among other things. The lack of support was so frustrating. As a result, I ended up not getting the treatment I needed. I doubted myself. It wasn’t good for my physical or mental well-being.

Sharing sooner rather than later

I’ve developed a philosophy of sharing my diagnosis early in a relationship. I believe the person I am with has a right to know what they may be getting into, and I have the right to know how they will handle it. I want my partner to be able to manage my condition. Hemophilia can be a major focus at times. As my partner says, “She talks about it all the time, but how can she not? Hemophilia is pumping through her blood. It is in her body, it is part of who she is.” Understanding is critical.

Whether you disclose immediately or later in a relationship, people you date must understand your hemophilia. They must also know the realities of life with someone who has hemophilia, including physical limitations, bleeding, or a prophylactic infusion routine. If the person is worth keeping around, they will support you. They will encourage you to get treatment and take care of yourself — and will be at your side as you do.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.

Shellye Horowitz is a licensed school counselor and school administrator with over 25 years of experience in the field of education. Shellye has strong ties to the bleeding disorders community with five traceable generations of hemophilia A in her family.
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Shellye Horowitz is a licensed school counselor and school administrator with over 25 years of experience in the field of education. Shellye has strong ties to the bleeding disorders community with five traceable generations of hemophilia A in her family.

2 comments

  1. Richard says:

    When you tell people they treat you differently, but I think its more about the fear of the unknown, how this could affect them, and societies stigmas and perceptions towards. If you disclose to early many people become hesitant, especially their extended families and friends.

    If people get to know you first as a person, they are more likely to have compassion and acceptance. And the more you get to know about other people, the more you realize that no one is perfect, everyone has their stuff.

    If Haemophila has a major influence in your life, are you a ‘Person with Haemophila’ or a ‘Haemophila Person’? This was changed in society to put the person first to be accepted as a person in society. But sometimes I think this can also be a hindrance as it denies the reality of your reality of being a Haemophiliac, as if you are just a hypochondriac.

    Do we see Heamophilia as a hindrance so we struggle to be accepted, having a lack of self-worth in society, or, has societies perceptions created a stigma and fear of the unknown through history that we challenge against?

    P.S. (Disclosing Disability) An Occupational Consultant once said to me that, “Haemophilia is not a disability, its a condition”. But I question this in many ways, as it can be very dis-abling, personally and in society.

    • Shellye Horowitz says:

      I agree with you – it sounds like you have spent a lot of time thinking about the many aspects of disclosure, as well. I know many people who want to be called “hemophiliac” and not “person with hemophilia” for many of the reasons you mention.

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