When Hemophilia Makes You Feel Different

My son, Jackson, is nearing his 12th birthday. For our family, hemophilia is genetic. so Jackson has been dealing with his diagnosis since birth. We’ve been very open about his bleeding disorder since he was little; sharing and educating our family, friends and teachers. We are fortunate in that he can feel a bleed before you see any visible signs. Many times we are able to administer his medicine before any swelling occurs. We trust our son when he shares he has a bleed.
When he was younger we would pick him up from school to bring him home to give him his medicine. As he grows older we realize this could be a way for him to use a bleed as a way to come home early. So we talked with him about our concerns and expectations of school and he now knows that when he has a bleed that we will bring his medicine to school, assess and administer. Depending on the extremity and severity we may administer and send him back to class; other times he comes home.
Lately, his friends think he’s faking a bleed. Really, how could you blame them? They don’t understand bleeding disorders, they don’t see anything visibly wrong with him – he runs, jumps and plays just like them but he gets to go home because he says he has a “bleed.”
The last time he had a bleed at school and I decided it was best for him to come home, he got in the car and said, “My friend’s don’t believe me.” I said I understood and reassured him that coming home was the best decision for him and that he shouldn’t worry about what his friends say. I told him that his real friends will stand by him no matter what and also said to him that they are just jealous that he gets to go home for the rest of the day. It’s not like he’s skipping school, eating a gallon of ice cream and going to the movies…he’s hurting; he’s in pain and he has to rest. As if any 11-year-old wants to rest! So, we will keep working through this and sharing and educating his friends who truly want to know about his bleeding disorder.
We continue to keep an open line of communication with him and while the teenage years are upon us, I am hopeful that we have laid the groundwork for it to continue. While I would like to keep him little and fight his battles for him forever, the truth is, he won’t stay little and I can’t fight for him all the time. What I can do is help him navigate, how to stick up for himself, and how to muddle through the mess of friends who don’t believe him.
Jen lives in Ohio with her husband, Joe, and their three children: Evelyn, Nora, and Jackson. She is part of the inaugural HFA Advocacy Leadership Council.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.