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Dating is like bleeds. You never know what’s going to happen.

Swiping right with haemophilia

Dating. It’s exciting. But it can also be a minefield. Add haemophilia to your dating bio and, well, that can make for an awkward conversation. From the pre-date nerves, to getting to know someone on a personal level… and a physical level, dating is full of hurdles to overcome.

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Teaser - ReDefine Haemophilia (Relationships)

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Telling Your Partner About Your Haemophilia - ReDefine Haemophilia (Relationships)

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Haemophilia and Intimacy - ReDefine Haemophilia (Relationships)

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Planning For The Future With Haemophilia - ReDefine Haemophilia (Relationships)

SO, Why can dating feel difficult when you have haemophilia?

Around a third of young men feel their haemophilia affects their ability to get close and intimate with potential partners. But why?
Among people with haemophilia:* 1

50%

worry their condition can be difficult to understand


40%

feel it can make them different or unattractive


46%

can feel scared of negative reactions

And when it comes to sex, there are more concerns

Among people with haemophilia:** 2

50%

think it affects how good their sex life is


20%

believe their haemophilia causes a range of issues that affect their intimacy


19%

worry sex might cause a bleed

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First up: telling your partner you have haemophilia

There’s no right or wrong way to tell your partner about your haemophilia, but if you’re thinking about letting them know, here are some tips to consider:

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Be patient4

Why not suggest they visit The Haemophilia Society for further information around haemophilia and sex.

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Be patient4

They’ll probably have questions: “so… will you bleed to death from a papercut?” you know… the usual assumptions. Just answer calmly and give them time to process and understand what you’re saying3.

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Keep it simple3

Don’t overload them with information, which they might not understand. Of course, if they want to know more, then keep talking about it.

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You could start by asking a question

Show them you live a normal, proactive life and reassure them that your condition is treatable and doesn’t make you different to everyone else.

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You could start by asking a question

This is the perfect opportunity to correct any misconceptions and clarify any doubts.

'Have you ever heard of haemophilia?’ or ‘What do you know about haemophilia?'

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Choose a time that suits you both3

Have a regular chat like you would normally, get a sense of the mood they’re in, and if it feels right, then just tell them!

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Choose a time that suits you both3

Wait till you’re alone together and not preoccupied or thinking about something else.

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Choose a time that suits you both3

The right time is different for everybody, and only you will know when that time is.

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    HAVING A LOVE LIFE AND HAEMOPHILIA DOESN’T HAVE TO BE COMPLICATED

    Remember, you’ve got a whole team you can turn to for advice; from family and friends, to doctors and nurses - they’re not just there for medical support.

    They can also give you guidance on other aspects of haemophilia, even managing relationships. Believe it or not - your healthcare team are people too.

    Why not talk about it at your next appointment?

    Read More

    Protecting your mental wellbeing

    Living with haemophilia can be full of ups and downs: some days you might be feeling fine whereas other days may leave you feeling pretty low. It’s okay to have these down days – you’re only human after all!

    What a pain in the elbow, knee, ankle, hip…

    Haemophilia-related bleeds can sometimes just happen, for seemingly no reason at all. And when they do, they can cause all sorts of problems – from the swellings that hurt and make it hard to move, to the countless plans you’re forced to cancel.

    Exercise: Your ally against haemophilia-related bleeds

    Regardless of what your reasons for avoiding exercise might be, it definitely has benefits both for your haemophilia and your health generally.

    The art of travelling with haemophilia

    When you have haemophilia, getting out and about in your day-to-day life can be tough, let alone travelling. So what happens when you’ve got a holiday planned?

    How does your pain measure up?

    Living with haemophilia often goes hand in hand with experiencing some sort of pain – whether this is pain from needles, pain from bleeds or pain in your joints. This pain can be exhausting, which is something that people who’ve not experienced it, struggle to understand.


    References

    * In a HERO study of 230 young adults with haemophilia, of whom 84 responded to questions on the impact of their condition on relationships.1

    ** In a study of 675 adults who responded to the HERO questionnaire.1,2

    † Based on average response across the following issues that had an impact on intimacy/sex life: fear of rejection (1%), mouth bleeds that might affect kissing (1%), no children (1%), a partner finding somebody unattractive because their weight has increased (1%), ignorance about haemophilia (1%), trouble with getting or keeping an erection – also known as ‘erectile dysfunction’ (1%), ‘other’ (4%), fear of a bleed during sex (19%), not feeling good about their body (24%), not having any/enough sexual desire (21%), being in constant pain (26%), feeling tired/lethargic (30%), side effects of medication (25%), previous experience of a bleed during sex (24%), having an HIV (human immunodeficiency virus) or HCV (hepatitis C virus) infection (53%), and limitations in movement (60%). Numbers don’t add up to 100% because people could choose more than one answer from a multiple-choice questionnaire.2

    1. Witkop M et al. Am J Hematol 2015; 90(S2): S3–10.

    2. Blamey G et al. Patient Relat Outcome Meas 2019; 10: 243–255.

    3. HemAware. Navigating new relationships when you have a bleeding disorder. Available at: https://hemaware.org/life/navigating-new-relationships-when-you-have-bleeding-disorder-0. Last accessed: January 2020.

    4. The Haemophilia Society. Sex and bleeding disorders. 2019. Available at: https://haemophilia.org.uk/wp-content/uploads/2019/11/sex_BD_web.pdf. Last accessed January 2020.