Having open discussions about our mental health is crucial for healing

When we're struggling with anxiety, my son and I share our feelings

Cazandra Campos-MacDonald avatar

by Cazandra Campos-MacDonald |

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Everyone experiences anxiety, yet not necessarily at the same level. When getting on an airplane, making a doctor appointment, or otherwise triggered, the anticipation and worry about what will happen can get the best of people. Some would argue that they do not have anxiety. It’s often these people who think anxiety is something that can be dealt with quickly or even shrugged off.

Imagine being nervous about a big test. Once the test is over, most people feel a sense of relief and go about their day. However, a person with extreme anxiety will continue to feel nervous without reason.

When I go grocery shopping alone, I must use my AirPods. If I go into the store without a podcast or music in my ears, it doesn’t take long for my anxiety to appear. I can walk down an aisle, and, in an instant, feel like I cannot breathe. My heart races and feels like it will pop out of my chest. There’s no reason this happens, and it’s hard to explain. Fortunately, the music in my ears soothes me and helps keep my anxiety at bay most of the time.

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My youngest son, Caeleb, is 17 years old. Not only does he live with severe hemophilia A with an inhibitor, but he also has issues with his mental health. One of those issues is heightened anxiety. In Caeleb’s case, it’s often debilitating.

Imagine being a kid and needing medication that requires accessing a vein regularly. Yes, many children get used to the process and accept it as part of their everyday life, and Caeleb did when he was still in diapers. But over years of poking and prodding, some children, like Caeleb, experience significant complications with their disorder, and treating their condition becomes challenging.

When Caeleb entered elementary school, inhibitor complications took center stage. I watched as Caeleb slowly began to lose control. He didn’t have a say in whether he wanted to infuse in the morning or the afternoon. Caeleb couldn’t choose whether to go outside and play with the dogs because he couldn’t walk. Bleed after bleed propelled him into the hospital without his consent. Little by little, as his condition worsened, he lost more control over himself.

I vividly remember the hours it took for the nurses to start an IV, and not once, but seemingly hundreds of times. To access a vein, nurses had to restrain Caeleb. Through his screams, cries, and tears, my sweet son fought. He wanted to control whether someone poked him with a needle, but he didn’t have an option.

I believe that Caeleb’s anxiety began to develop in those early years of constant hospitalizations and issues with ports. His life revolved around appointments, infusions, tears, and needles. Caeleb’s friends played and ran outside, and hemophilia took that away from him.

As Caeleb has matured, his anxiety is still an issue, affecting his schoolwork. Caeleb still misses school several days at a time due to pain and limited mobility. Getting overwhelmed is easy as he struggles to keep up.

Caeleb often shuts down when anxiety consumes him. It breaks my heart to see him struggle.

I often talk to Caeleb about my struggles with anxiety. Some parents would be mortified if their children knew about their mental health struggles. My husband and I are very open with our sons. My struggles with depression and anxiety haven’t exactly been something I could hide.

Instead of trying to keep a secret about my condition, I decided to be vulnerable with my children. I hope that my vulnerability will help my sons see me as a human being, a human being who truly sees them. Having secrets can only do damage, so openness is the only option.

On the drive home from church, Caeleb once said, “Mom, I don’t have any friends whose parents talk to them the way you and Dad do. You both talk about everything.” That’s when I knew I did something right.

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.


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