As My Abilities Diminish with FA, My Frustration Grows

When I have an initial conversation with someone about my FA diagnosis, the person almost always asks, “Are you in pain?”

At first, I didn’t experience any pain whatsoever. Later, I started having restless legs and sporadic, debilitating foot cramps after the days I pushed a little too hard. It only happens in bed, when I’m trying to fall asleep. Other than that, I don’t have any pain. It wasn’t until recently that I started thinking about this fact.

Everyone who has FA is in a separate stage of progression and experiences symptoms in different degrees. I, for instance, am still ambulatory and walk most of the time. I wasn’t diagnosed until age 22, so the later onset has given me a somewhat different set of challenges. Think of FA as a spectrum. For a person at one end, FA becomes symptomatic and noticeable at a young age, leading to an early diagnosis, and FA is all they know. At the other end is a person who reaches adulthood with their body fully developed, then becomes symptomatic and slowly loses the abilities they once had. I am that person.

Now when others ask if I’m in pain, I say, “No, just frustrated.” I can always tell when that strikes their curiosity.

It feels like I am going through seven stages of grief over my loss of ability, but I’ve gotten stuck on anger and bargaining. The online therapy platform thrivetalk desribes this stage as follows:

“Thoughts of ‘why is this happening to me’ are quite common. It is also normal to feel anger towards yourself for not being able to change the situation or anger at the person for causing it. … Bargaining for the loss and trying to find ways to turn the situation around are common. If we feel unable to have an effect, bargaining with the powers that be can help our feelings of anger.”

I am frustrated with having a front-row seat to my physical decline. I am still able to do important things like cooking, driving, dressing, and maintaining an apartment by myself. But slowly losing the ability to do the smaller things — putting on earrings and other jewelry, or anything else requiring fine motor skills; standing up while getting ready; hurrying — has been maddening. I hate asking for help with such menial tasks because I just want to do them myself, as I have always done.

I understand that this is just the beginning of the loss. I also understand that the things I’m grieving may not be important to others, but they’re challenging for me at this point in my progression and journey. It breaks my heart to know how long I’ve been able to do these tasks solo and to see that ability fade away like Thanos just snapped his fingers on my motor skills. I’m frustrated that it takes me forever to get ready to leave the house and that I have to think about every single step I take.

Dealing with this loss will probably be the hardest battle I face with my progression. Hopefully, one day, I can truly get a better grasp on it. I am grateful for the abilities I still have and all the things I can do, but I think it is natural to be upset over this kind of loss. I’ve beaten myself up because I didn’t think my frustration was a legitimate emotion; I thought I was just complaining. But loss and grief are different for everyone.

Do you have similar feelings and frustrations? What are some ways that you cope with loss? Please share in the comments below.

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