“Help, my partner has hemophilia! What now?”
I’ve been dating a person with hemophilia for four years. In those years, we’ve had a lot of memorable experiences together, but as his carer, I have also faced struggles. I’ll be honest and say that being a HemoGirlfriend isn’t exactly a walk in the park, but it’s not the horrific ordeal some people make it out to be, either. It can be taxing at times, but at the end of the day, what matters is that you are happy in your relationship with this person.
People with hemophilia experience persistent, and sometimes spontaneous, bleeding. Will his bleeds stop us from doing “fun” activities?
A bleeding disorder can impose limitations on what your partner can do. Your partner may long for adventure or take an interest in rough sports; but he or she may not be able to go on actual adventures, let alone do rough sports (a big NO!) lest your partner gets a severe, lethal bleed.
My partner Jared is a weightlifting enthusiast — as am I. Many hemophiliacs here in the Philippines avoid the weight rack, as weightlifting can put a strain on muscles and cause internal bleeds. However, Jared has been physically active since childhood. He’s an avid swimmer, he practices tai chi, and plays badminton. Because his muscles are strong, they can withstand the strain of weightlifting. Then again, this goes without saying: people with hemophilia should always consult a doctor before starting any type of physical activity.
Will my partner ever have a decent job?
People with hemophilia have limitations in some aspects of life. Unfortunately, many employers in the Philippines still refuse to hire people with disabilities. Jared has faced a number of rejections due to his physical conditions (hemophilia and epilepsy).
Looking for a job can be mentally and emotionally taxing for a person with hemophilia. You have to understand this, but still be supportive. Chances are your partner wants to be able to provide for you; much more than you might think. So, be patient with your partner — no pressure. If your partner tells you they are doing their best, chances are they’re doing 200 percent of what they already can.
Intercourse? That’s scary. What if I injure my partner?
You may have read the horror stories: two people are enjoying an intimate moment, when, suddenly, someone manages to break their partner’s machinery. You cringe at the prospect of such an injury.
Jared has severe hemophilia B. With us, things can get intense beneath the sheets, but we’ve never had an incident that caused a severe bleed. Minor surface bruises may be inevitable, but they’re also quick to go away, even without infusions. Of course, you wouldn’t want to equate intimacy with injury. Open communication is always necessary for intercourse to feel enjoyable and safe. If your partner thinks a certain position is likely to cause a bleed, avoid it. Your partner knows their body best — they’ve spent their entire life figuring out what hurts it and what doesn’t.
We’re thinking about getting married. Will we ever get to live independently?
Yes, with readjustments.
You’re going to have to get used to blurred boundaries between you as a couple, your partner’s parents, and other family members. Your partner’s parents have been there for them their whole life, and they may have stood by your partner through a host of traumatic events. They’ll never cease to be there — but it’s likely to be just because they care.
Even now that Jared and I are getting married next month, I still yearn for more independence. I look forward to the day I’m able to perform his factor infusions — or better yet, the day he’ll be allowed to infuse himself. I look forward to the day we’ll be able to book our first overseas plane trip together. I hope the right time will come, and by then we’ll both be ready.
I know a few others who’ve dated someone with hemophilia. Most other HemoGirlfriends and HemoWives I’ve met choose to see a person in their partner, not an illness. I saw Jared as a good friend before anything else. I had my own questions — choosing to stay and grow with him brought the answers.
Let me be the one to tell you that dating a person with hemophilia can be rewarding. I’ve always admired Jared’s emotional intelligence and his resilience in facing tough life situations. His epilepsy might be his greatest hurdle so far – but that doesn’t take away from how I see him. I think he’s a great partner; a disciplined and principled man who balances my weaknesses out with his strengths. I have no doubts that he’ll be a great husband, and an amazing father to our future little one.
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.