I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
Most of us have heard about the five love languages described by author Gary Chapman. Love languages are the ways that we show and receive love, and the concept is commonly used in relationship or premarital counseling.
For example, I show love through acts of service, and I receive love through words of affirmation. My husband and I know each other’s love languages, which has greatly benefited our relationship.
As we have gone through the phases of life together — dating, engagement, marriage, pregnancy, and parenthood — we’ve had many opportunities to redefine what love looks like. But add in the unpredictable and far-reaching complications of a progressive disability like Friedreich’s ataxia (FA), and embracing those opportunities becomes exceedingly challenging.
As my body falls victim to my progressing FA symptoms, I have become less willing to accept love. I often feel unworthy of it because I can’t see past my hatred of what FA has done to my body and my life.
In recent years, my internal reaction to receiving words of affirmation has often been “Yeah, right. Liar.” Or, “Man, if only I didn’t have FA and could do things the way I want to, then they would really be impressed.” FA has damaged my confidence and self-image so deeply that my first reaction to receiving love is negative.
I recognize this and am actively working on it, because I recently realized how unfair it is of me to project my insecurities onto the people in my life who are just trying to love me. They love me regardless of FA and the mindset that it thrusts me into, and that is a miracle. I need to work on accepting love, no matter how it’s shown or how I may be feeling about myself and my disability.
There are moments when I see myself in the mirror or in a photo and think, “I can’t believe I look like that 24/7. I can’t believe how disabled I am.” I can’t see past FA when I look at my life. Fortunately, my friends and loved ones can. They see my strength, perseverance, relentlessness, optimism, and decision not to be defined by my circumstances. They see FA and its effects on my life, but it isn’t all they see.
All of this is to say that when my cup is running low because FA has drained it, I need to accept love and let others fill it — especially at times when I don’t love myself.
My challenge to you is to do the same. Open yourself up to accepting love. It is genuine and you are worthy. Remind yourself that you deserve it, even when you don’t feel lovable.
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