Shared Struggles Allow My Husband and Me to Lean on Each Other

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by Alliah Czarielle |

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seizure, boundaries, shared struggles, birthday, school years, future-proofing, mistake, bleeds, exercise, motherhood, small business owner, Christmas, change, living, crab mentality, home, golden retriever, business, routine, childhood illness, unfair

I recently scheduled a consultation with a psychiatrist after years of trying to manage my mental health without professional help.

Since I was a teenager, I’ve dealt with chronic mental health issues that manifested in bothersome ways. In the past, I had difficulty sleeping, disordered eating, and fluctuating moods. I obsessed over imperfections in my possessions and could not rest until I had “fixed” these issues in some way.

It was an uncomfortable way to live, yet I rarely sought help because I couldn’t afford it at the time. In the span of a decade, I only saw a specialist once.

My most recent session was unique because I wasn’t experiencing any symptoms at the time. I worried that my new doctor would not be able to identify any issues, as I felt relatively fine. Yet in an interesting turn of events, I was evaluated for an entirely different condition.

I can’t say I was surprised, because the symptoms were there all along. I knew I was experiencing them in some way — I just wasn’t aware. Thankfully, my doctor did not think they were severe enough to warrant an intervention. He sent me off with some coping techniques and an assignment to monitor my moods. If I fall into a depressive episode, or if my suspected hypomanic state spins out of control, I should consult him again.

As I reflected on that session later in the day, I realized that I am exhausted from trying to act “normal.”

I was labeled a “gifted child” when I was young. Much was expected of me from a very early age. Since then, I’ve always felt the need to live up to other people’s expectations. I’ve also felt pressured to stay ahead of others.

Eventually, I found it hard to keep up. The feeling of falling behind delivered a major blow to my self-esteem. On my worst days, I see myself as an example of wasted potential.

I often need to be reminded that I have my own pace of doing things, as everyone does. We are not all the same. Everyone has a slightly different timeline in life, and that’s OK.

People often ask me how my husband, Jared, and I manage despite his hemophilia and seizure disorder. We like to joke that we are both “problematic” in a sense.

“Two wrongs make a right,” Jared jokingly says.

Looking back, our partnership makes sense because of our respective conditions. I know what it’s like to function differently from the norm, to feel misunderstood, or to be on the receiving end of helpful yet harmful advice.

People have told Jared not to do any strenuous activities to avoid triggering a bleeding episode. Although such advice seems logical, it is shortsighted. People with hemophilia need exercise to strengthen their muscles and joints and prevent bleeds in the long run.

Likewise, I have been told to simply toughen up, or that I am smart enough to get out of my mental rut. Little do these people know that those very “solutions” are what put me in that deep, dark hole.

If there is any bright side to my mental health issues, it’s that they might be one of the reasons I am loved today. If not for my personal mental health struggles, I would never have bonded with such a kind soul as Jared.

We both face a tremendous amount of pressure seemingly every day. Jared often feels like he is battling against his own body. I often feel like I am battling against society and my mind. These pressures can get to both of us and lead to feelings of hopelessness and desperation. Yet they also remind us to turn to each other. That way, we can find comfort.

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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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