One of the frustrations with having SCA3 is with telling people I have it, especially in the early stages when my symptoms were not outwardly apparent. As the symptoms intensify, telling people about it gets even weirder, because it’s still not particularly outwardly obvious. I have yet to deal with the later stages.
Triassic period (AKA early stage)
In the earliest stages, it’s about progression but not hardship.
If people asked how the disease was affecting me, I described indicators of disease progression while not trying to make points about hardship. I think I was often misunderstood. Some examples:
In the earliest stages, I found that I could no longer look up at the stars while walking without losing my balance. My point? I wasn’t making claims about hardship. I used to be able to do it; now, I can’t; therefore, the disease has progressed; my cerebellum is more degenerated than before. My perceived reaction back to me? “So what? If you can’t do it, just don’t! No big deal.”
Standing on one foot is almost impossible; hopping on one foot is impossible. My point? I’m not making claims about hardship. I used to be able to balance better and longer than I can now on one foot; I certainly used to be able to hop on one foot, which has long been impossible. Therefore, the disease has progressed. My perceived reaction back to me? “How old are you? Five? What reasonable adult cares about hopping around on one foot?”
I say “my perceived reaction” because I’m heavily interpreting, maybe even heavily distorting, what people might have been thinking, but I hope not to the point of building a straw man.
Jurassic period (AKA middle stage)
In the middle period, it’s about progression and hardship. Yet my claims of hardship can be greeted with skepticism.
The most common response to me describing my limitations is for others to say that “I can’t do that either” or “I have the same problem.” If someone else truly has the same limitation, even if they used to be able do it and can no longer, it’s not an indicator of disease progression for them like it is for me. And if the limitation is not a hardship for them, then they likely think that I’m complaining about negligible and normal things.
One effect of having this disease is extreme mental exhaustion. See here. This can be seen as extreme laziness. If I say I can no longer do or enjoy doing something because it’s become too difficult, others might say, “It’s hard for me, too.” Whether intended or not, the message I pick up from that is skepticism of my worsening condition. “It’s hard for me, yet I do it. If it’s hard for you, that is normal and you should also be able to do it.”
Everyone is working hard to get through life. Nothing is inherently easy for anybody, even doing hobbies that one enjoys. With ataxia, the difficulty of most activities is unnaturally amplified to the degree of being impossible or at least entirely unenjoyable, which makes many things pointless.
Cretaceous period (AKA late stage)
I’m still in the middle period, so I have the late period to look forward to.
I realize I’m bumping into the general complexity and awkwardness of social interaction. I recognize the social instinct to say, “me, too,” as a way to bond or commiserate. The accelerated aging aspects of ataxia do mean many symptoms overlap—on the surface—with those of an aging person—i.e., the rest of the world.
The end result for me has been learning not to talk about it, which is part of remembering that most people don’t want to hear about my health problems anyway.