What I Can and Cannot Control as a Mom With Chronic Illness


Living with multiple disabling conditions teaches you a lot about life, like how to recognize what you can and cannot control.

I cannot control when or where I will or will not have a flare. I can control how I prepare for the flares that happen. I can also make a conscious and concerted effort to not overdo it or over-commit myself.

I frequently have to back out of things I want to do. I miss my son’s activities like sports games, concerts and meets. I miss parties and lunch dates. I end up leaving events I do make it to early. My immediate family is extraordinarily understanding and supportive, as are most of my close friends. Then there are those people who don’t get it, who think I’m a flake or a faker; like I’d choose to miss out on the things I enjoy. I can’t control what people think about me; I can control how I feel about myself and my healthy choices, to do what I need to do based on the limitations of my disabling conditions.

I truly try to minimize the things I commit to. I hate backing out of commitments – it is extremely defeating and demoralizing. It is difficult to miss out on the things I want to do and the things I want to contribute to. I am frequently asked to do things, to take on contributing roles or to participate in various activities. I hate that I can’t commit to anything long-term. I hate that I can’t participate in many of the things I am passionate about. I cannot control my limitations; I can control my acceptance of my limitations.

I definitely have good days. This summer I had an exceptional amount of good days; the summer before I was confined to bed the majority of days due to my dysautonomia (dysfunction of my autonomic nervous system). I can’t control when I will have good days; I can control taking advantage of the good days I am blessed with.

Chronic illness completely changes your life. It is tough to juggle multiple chronic disabling conditions. I cannot control how my chronic illnesses impact my life; I can control my acceptance of the impacts my disabling conditions have on my life. My journey as a spoonie has only just begun. My whole life is ahead of me, and I commit to finding ways to contribute toward positive change and broader understanding of living as full of a life as possible with disabling chronic conditions.

This post originally appeared on Spoonie on a Journey.

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