Tips for supporting and validating loved ones with hemophilia

Three weeks after my hysterectomy, I was sitting 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, “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.

Life with hemophilia is challenging. It is normal for many of us to experience fear and anxiety, particularly in the middle of a bleeding incident. Others worry about future bleeds as they are coping with memories of past medical traumas they do not want repeated.

Well-meaning people have offered me words they believed were encouraging, yet 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 in those moments to help ground me emotionally.

Below, you will learn some strategies you can use to support someone you care about who is struggling to cope with the anxiety that living with hemophilia can bring.

Please don’t tell me to ‘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 “superhero” is that it gives an unspoken message that they must be strong. Often, strong 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

As a former school counselor, I spent years training students as peer counselors. From elementary through high school these young people were able to grasp strategies that help their peers know they understand, care, and were there to offer support. The ultimate goal is to offer validation and presence, helping them feel heard and cared about so they understand they are not alone.

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.

Side note: Many therapists debate whether you should hand a crying person a tissue. Some feel passing a tissue to a crying person signals that you want them to stop expressing emotion, which could shut the person down. Therefore, it is recommended to place the tissue box in an accessible location or wait for the person to request a tissue.

There are many strategies you can use to offer a safe space and loving support to a person coping with the stress life with hemophilia can bring. Remember your presence and compassion are key. Be present in a nonjudgemental way. Avoid immediate problem-solving unless specifically asked.

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: “I hear you saying how scary it is to think about giving your child their medication on your own.”
• Name the emotions you’re sensing to help them process and feel known: “It sounds like you’re feeling really scared about the treatment decision you need to make,” or, “As you spoke, I sensed you are struggling with the guilt of knowing you passed a genetic variant to your child that causes hemophilia.”
• Use “I” statements so they know you care: “I can imagine that must be incredibly difficult.”
• Normalize their feelings and experiences so they know they aren’t going crazy: “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; when someone is anxious, it can feel as though the situation is out of their control.

• Ask how you can help them: “What do you need from me right now?” or “How can I best support you?”
• Offer to collaborate on solutions if they want to brainstorm: “Would it be helpful for us to chat about possible options moving forward?”
• Provide information or resources if requested: “Have you seen information from the national hemophilia organizations on these topics? Would you like me to send you the links?”
• Give the opportunity to research together: “I also do not understand the best way to calm a child who is scared of needles. Can we explore this together?”
• Propose scheduling regular check-ins for support: “I enjoy connecting with you and am wondering if we could plan to meet weekly for coffee to continue the conversation.”

Connection and validation reduces anxiety

When I reflect on the strategies above, I see them as part of a tool box. Not every tool will be used with each person you encounter. Finding the right tool for the person you are assisting is key. By employing these strategies, you are helping a person feel connected and understood. This builds resilience and it also builds agency, bolstering their confidence and strengthening their coping mechanisms.

When we see loved ones struggling with hemophilia, it is easy to feel inadequate and wonder what we can offer. 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 provides 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.