Three weeks after my hysterectomy, I sat in a hospital emergency room pouring blood. Losing that much blood and not understanding why was scary. While waiting to be seen by a doctor, I posted on social media because the idea of people praying for me was comforting, even though I am not particularly religious. One well-meaning person replied to my post with “You are strong, you’ve got this!”
The problem was, at that moment, I didn’t feel strong, and I definitely did not “have this.” Everything was out of control. I was terrified.
It is normal for many of us with hemophilia to experience fear and anxiety, particularly in the middle of a bleeding incident. Others worry about future bleeds as they cope with memories of past medical traumas they do not want to relive.
Well-meaning people have offered me words they believed were encouraging, but which unintentionally caused me more frustration and pain. I always try to remember that they mean well. Secretly, I wished they had been able to offer genuine validation and support to help ground me emotionally.
Below are strategies to help you support a loved one who is struggling to cope with the anxiety that can be part of living with hemophilia.
Please don’t tell me ‘Be brave’ or ‘You’ve got this’
The problem with telling people to be brave or assuring them they are in control, or calling them a superhero, is that it conveys an unspoken message that they must be strong.
Often, strength is interpreted as being stoic and stuffing emotions. This can inadvertently create barriers between patients, caregivers, and their support systems.
How to support an anxious loved one
There are many strategies you can use to offer a safe space and loving support. Remember, your presence and compassion are key. Be present in a nonjudgmental way. Avoid immediate problem-solving unless specifically asked.
One of the bravest things a person struggling with hemophilia-related anxiety can do is admit they are struggling. It is OK to feel weak; it is OK to be angry, frustrated, and overwhelmed. And, it is definitely OK to cry.
Your ultimate goal is to offer validation and presence, helping them feel seen and cared for so they understand they are not alone.
Help them feel heard by using active listening and offering empathetic responses:
Mirror their words by paraphrasing what they said back to them to offer an opportunity to correct any misunderstanding. For example, you could say “I hear you saying how scary it is to think about starting that new medication.”
Name the emotions you’re sensing to help them process and feel known. Try something like “It sounds like you’re feeling really scared about the treatment decision you need to make.”
Use “I” statements so they know you care. For example, you might say “I can imagine that must be incredibly difficult.”
Normalize their feelings and experiences so they know they aren’t going crazy. One possible response is “It makes perfect sense that you’d feel anxious given what you’re going through.”
When it is appropriate, offering practical, empowering support can help an anxious person start to regain feelings of control.
Ask how you can help them. Perhaps try “What do you need from me right now?” or “How can I best support you?”
Offer to brainstorm solutions. You could ask “Would it be helpful for us to chat about possible options?”
Provide information or resources if requested. Maybe say something like “Have you seen information from the national hemophilia organizations on these topics? Would you like me to find you the links?”
Research together. Perhaps say “I also do not understand the best way to approach that problem. Should we look into this together?”
Suggest scheduling regular check-ins for support. You might say “I’m wondering if we could plan to meet weekly for coffee to continue the conversation.”
Connection and validation can reduce anxiety
I see these strategies as part of a toolbox. Not every tool will work for everyone, so finding the right one is key.
Helping a person feel connected and understood builds resilience. It also builds agency by bolstering confidence and strengthening coping mechanisms.
When we see loved ones struggling with hemophilia, it is easy to feel inadequate. In these moments, I remind myself that sometimes the greatest gift is just being present with someone who is struggling.
Knowing they are not alone can provide them with strength to continue on the journey.
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, and are intended to spark discussion about issues pertaining to hemophilia.
