Determining Cause and Effect With Anxiety and Hemophilia

Shellye Horowitz avatar

by Shellye Horowitz |

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My heart raced and pounded as a bead of sweat rolled down my cheek. My chest was so tight that it hugged my heart, which seemed to be doing flips. What was happening to me? I wanted to run away. I wanted to stay and hide. I wanted to scream and cry. Would I die?

Why did I feel this way? I had tripped and stumbled on a hike the day before, but I was often a klutz. Hobbling around for a week after being clumsy was my normal. Didn’t that happen to everyone?

Though I felt like I was near death, anxiety had merely taken hold of me. Before my hemophilia diagnosis, I was likely to panic when my body didn’t feel right. I couldn’t find the words to describe what was going on; all I knew was that I felt “off.” I knew something was wrong, but I couldn’t identify what.

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Is it anxiety?

Anxiety disorders are real, and what I described could be symptoms of one. At that time, my doctors believed I had anxiety, which can cause all sorts of physical and emotional responses, they insisted.

Explaining my situation didn’t get me far. “You don’t understand the cause and effect. I am panicking because my body feels off.” My anxiety was the response, not the trigger. Words were wasted trying to explain. They didn’t seem to understand.

I was offered medication to make the anxiety go away. It didn’t work, as anxiety wasn’t the root problem. The problem was that I had yet to be diagnosed with hemophilia and receive treatment.

I grew up with this anxiety. The more active I was, the stronger it became. This was awful, as I wanted to be active but was often slowed down.

Putting the pieces together

Eventually, I found doctors who listened. We put the pieces together and discovered my body was indeed “off.” I had experienced many bleeds from undiagnosed hemophilia throughout my life. When they went untreated, I knew something was wrong. But because they were often smaller bleeds, rather than the bleeds someone with severe hemophilia might experience, they were missed.

When I began the correct treatment to prevent bleeds, the anxiety disappeared. My body no longer felt off because it wasn’t. As I had always known, the root issue was not anxiety. When the root problem was resolved, so was the panic.

You have the right to be heard

I am fairly certain that my experience is not unusual. Too often, people are dismissed when seeking medical assistance. Sometimes they instinctively know something is wrong, but when doctors can’t identify a problem, they may blame psychological issues.

Psychological issues are real and should be addressed when present. But it is not fair to immediately assume someone is dealing with a psychological issue simply because there’s no apparent biological explanation. Perhaps more research is necessary.

If you know that something is wrong with your body, continue to persevere. Work with your treatment provider, as I did, to better understand the causes and effects of your health issues. If cause and effect are mixed up, it can have a strong impact on diagnosis and treatment. You deserve to be listened to and understood. Seeking and receiving appropriate treatment can be life-changing. Don’t give up. You owe it to yourself. You are worth it.


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.


Peter George Ruehlman avatar

Peter George Ruehlman

So, was your father a hemophiliac and your mother a carrier?

Shellye Horowitz avatar

Shellye Horowitz

Hi Peter,
No. My dad had Hemophilia and I got one mutation from him. If you read up on X-Inactivation or lyonization you will see that women with one mutated x can exhibit disease due to skewed X-Inactivation processes.


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