Closer family ties
When you consider the word ‘relationships’ what does it make you think of?
By default, you might find your mind wanderings to the type of romantic love you see between two people, candlelit dinners and butterflies in the stomach.
However, that’s not all; we navigate relationships in varying degrees all the time. From work colleagues that we see (almost) every day to our closest friends and family. Whether we realise it or not, we are part of many different relationships and our personal experience of each may have an impact on who we are as a person.
If you are living with hemophilia, have you ever found your bleeding disorder has impacted a relationship, and was that experience a positive or a negative one for you? Have you perhaps come across the misconception that it can get in way of a close relationship, or that a person living with hemophilia might not want to socialise as much or take part in new activities?
If you’ve ever experienced this, you’re not alone. You might have had concerns about wanting to share your personal situation with someone new or you might have known a friend for a while but have never wanted to speak about it before.
If that sounds like you then read on as we discuss some insights and helpful advice how to navigate that conversation - if you feel like that’s something you want to do. As you’ll discover, it might even turn out to be a highly positive experience!
Love is in the air
A US study called Bridging Hemophilia B Experiences, Results and Opportunities into Solutions sought to uncover the impact of hemophilia B on everything from education to physical activity, as well as relationships. The study which included adult male and female patients provided a lot of insight into matters of the heart which you may recognise.
Two in five (40%) of adults said having hemophilia made them feel different or unattractive and about one third of young men feel it affects their ability to get close and intimate with potential partners.1
Interestingly 50% of those asked went as far worrying their condition could be difficult to understand by a significant other, and the same again (50%) thought it affects how good their sex life is.
However nearly all - a staggering 98% - of coupled-up participants were very or quite satisfied with the support received from their current partner. Meaning that conversation with a new love interest could turn into something incredibly positive after all.
A separate survey, The Hemophilia Experiences, Results and Opportunities (HERO) study, conducted in 10 countries, was designed to better understand the psychosocial issues of adult male patients with hemophilia A or B and their caregivers2.
From their dreams, to the impact of support and family love, the findings showed people with hemophilia also had a lot of positives to reveal about their family lives.
Many parents who also had unaffected children said that having a child with hemophilia actually had some positive impact.
Reasons given for positive impact were:
Increased maturity in other siblings
Increased responsibility in other siblings
How easy do you find it to talk about your bleeding disorder amongst your family? Have you ever spoken to your parents or loved ones about their thoughts surrounding the positive impact it may have on a family unit?
When navigating relationships in the workplace, good communication and preparation are great tools to have anyway but that can put your mind at ease when speaking about hemophilia and even ensuring you have support in case of a bleed.
If it is something you would like to discuss, try talking to your management and immediate team to ensure they know what to look out for – in doing so, you may feel more relaxed in trusting others to understand your condition. It does not need to be a huge announcement and something you do straight away. Take your time and do what feels right for you.
The reality is, everyone will have to engage in one form of relationship or another, be it the relationships you have with family and friends, or the relationships you form with work colleagues and your support team. With this reality there will be situations that you’ll encounter for the first time and people you may have to talk to about your condition and that means sometimes having those awkward conversations.
It may feel easier to ignore for all the following reasons…
- Fear of other people’s reaction
- Feeling like you’re unable to make others understand your condition
But remember these 3 simple truths:
- What you reveal and when you reveal it, is completely up to you
- There is no right or wrong way to tell someone
- You are not alone
Pick your moment – choose a time, a place and a situation that feels most natural and comfortable for you and the person you are conversating with, limit your distractions and get talking
Be prepared – be open to people asking you questions about your experience and making assumptions
You have a team – don’t forget your support system extends to your healthcare professional team too
Open and honest conversations with family, friends and partners can help you feel closer to them. We know there can be some difficult conversations, but you might feel more comfortable after taking the plunge and having that discussion. Relationships can be affected by life with hemophilia, so it’s important to feel understood and accepted for who you are, in all aspects of your life. Advice and support from others can help to improve your personal relationships, especially if you’re able to seek counsel from a healthcare professional. Remember, they are human just like you. They understand the complexities that come with forming and maintaining relationships.
Start that conversation and talk to someone today!
- Buckner TW, Witkop M, Guelcher C, et al. Management of US men, women, and children with hemophilia and methods and demographics of the Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study. Eur J Haematol. 2017;98(Suppl 86):5–17. doi:10.1111/ejh.12854
- Forsyth AL, Gregory M, Nugent D, et al. Hemophilia Experiences, Results and Opportunities (HERO) study: survey methodology and population demographics. Hemophilia. 2014;20(1):44–51. doi:10.1111/hae.12239