Ataxia and Anxiety: Its Impact

A Three Part Series: Part III

This post is available in an audio podcast format HERE.

If we had no feelings or emotions then the triggers of our ataxia that we experience arising from the environment, our vision, or our physical self would be nothing more than an on-off switch to our symptoms; change the environment, symptoms drop. Sure, the manifestation of our ataxia in our symptoms is always present, but as the people in our small sample group (See Part II) explained, they perceive their symptoms to become elevated when feelings of stress and anxiety were present.

When we have elevated symptoms then the stress and anxiety also increases to the point where we reach overload and crash in exhaustion, mind fog, and even tears. This, I think is our ataxia reboot. Sadly, the reboot doesn’t wipe the memory like it might do on the computer. Our feelings and perceptions remain.

Author Harriet Lerner, takes on the challenging topic of chronic illness and its relationship with fear, anger, anxiety, and shame. She described that receiving the news and internalizing the reality that one now has a chronic, progressive, degenerating condition is a crash course in vulnerability. While ataxia itself may not be what kills many of us, the reality is that it contributes to shortening our life spans and making our stay in “God’s waiting room” really uncomfortable both physically and mentally.

“Being in a crowd of people all going different directions,

Eight of the 19 Ataxians in the survey made a direct reference to getting triggered and anxious when in crowds and out in public. Definitely the overwhelming audio-visual stimulation of a moving mass of people causes our neurological processes to stress as they attempt to make sense of the experience. As one person stated, “Being in a crowd of people all going different directions,” was the sensory overload that triggered elevated symptoms. A few others noted that how we perceive ourselves in these crowds pushed the ataxia symptom buttons. “If I have to walk in front of a big crowd,” stated another Ataxia, suggesting that how we walk, or stagger, which is perceived as not normal, produced nervousness and stress. “The looks and stares from others,” further illustrated how we feel we are being perceived resulting in anxiety.

Lerner contends that our brains automatically create comparisons between ourselves and others and that these comparisons produce anxiety and shame.

Any shame we feel is socially reinforced continually. For example, ‘Only unhealthy, disabled people use a walker.’ When the medical profession describes ataxia as a condition that causes the patient to appear drunk may be accurate, it becomes a negative description, because we know, and society knows, how drunk people behave. I have opted to use a wheelchair even though I am ambulatory and in good physical condition, yet when a friend of mine said to me, “Once in a wheelchair, you never get out!” I felt immediately stereotyped as being weak and giving in to the disease. And, because ataxia is an internal, invisible disease, people, including family members, don’t believe it is that bad, implying that we are faking it.

Shame is a double edged sword in that it can create depression when we think about past experiences and anxiety-creating when we image how something is going to be perceived.

Brené Brown, in her book, The Gift of Imperfection (2010, 2020), challenges us to accept our imperfections, and we all know that with ataxia, those imperfections are constantly evolving. Like Brown admits, I too am a recovering perfectionist. Before ataxia settled into my life, I worked exceedingly hard to make sure things were just right in my relationship, my career, and in my world and then some things started to fall apart. It is then that I picked up Brown’s book to work at letting go of who I thought I was supposed to be and accept the person who I am. And then ataxia came along and ripped into my newly formed accepted self.

I think this story is shared by most of us. One day, we are enjoying walks in the park, dinners with friends, and trouble free vacations. And then over a period of time (or maybe it is rather quickly, as I am finding) the walks require hiking poles, a rollator, or a wheelchair. Hosting a dinner for friends is near impossible and going out can be anxiously exhausting as you try to keep food on your fork. Vacations and travel become complicated exercises ensuring flights, trains, and hotels are accessible and that the temperature of the locations don't negatively affect our symptoms. As people with ataxia, our authentic ataxia selves are pitted against the healthy, ableist model of perfection, and we worry and fret over this, which leads to driving up our symptoms.

Brown argues that our white-knuckle grip that we have on what we perceive as perfect and our perfectionism produces debilitating and “life-paralyzing” shame, depression, and anxiety. Brown suggests that we internalize our sense of perfectionism and it surfaces in two ways. I know as an Ataxian, these resonate with me.

• First, “Perfectionism is the belief that if we live perfect, look perfect, and act perfect, we can minimize or avoid the pain of blame, judgment, and shame.” Think of this in the context of what some Ataxians reported about the triggers of their ataxia symptoms. Family and friends not really understanding the physical and emotional impact that ataxia has on the person (judgment). The stares people in public give and our sense of being overwhelmed in crowds or in particular environments making us nearly unable to function (shame). Brown suggests that our efforts to live, look, and act perfect, never really materialize, but the feelings of anxiety, stress, and shame certainly do.

• Raise your hand if you have felt the energy draining fatigue of ataxia. I do every day and it plays right into my most destructive perfectionist belief, and Brown’s second destructive perfectionist point: "I am what I accomplish and how I accomplish it." As a kid, striving to succeed in school and completing projects perfectly was the gold standard to which I was held.

As an adult, I would put countless extra (non-paid) hours to create the best reports, presentations, and meetings. Today, my inner voice says that I still have this and that to do, but my ataxia body is exhausted and I blame it for not letting me accomplish stuff as I want to. Years of mental conditioning focused on the construct of what “perfect” is, is so deeply embedded that even as I live alone with no one to impress, my inner perfectionist voice yells at me, and continues to upset me.

For whom am I really do this? This is Brown’s question and it smacks me on the side of the head with a reality check: “What will they think?” My reactionary response is: They already think I am some odd disabled person, now they will also think that I can’t get stuff done. Maybe they will think I should be in some care facility. One person actually expressed that to me a few months back. In less than 30 seconds my anxiety swollen brain went from recognizing myself as someone coping to get something done to being put into a care facility! Classic anxiety based stress.

Allow me to attempt to weave these three parts together and possibly offer some support. Research informs us that ataxia related disabled brain tissue produces a misfiring of motor functions and it shows that when placed under stress, the misfiring becomes chaotic resulting in large and small muscle control issues. We have recognized how anxiety, the forward thinking worrying, is a stressor. Our own stories have revealed that Ataxians experience unique sources of anxiety that is grounded in the disease and that these are in addition to the typical day-to-day stresses that healthy, able bodied people feel. As well, our experiences tell us that there are at least four categories of ataxia-type stress that can trigger symptoms. Finally, I have offered some ideas as to how our emotions and our sense of perfectionism can produce fear, shame, and anxiety that are like gale force winds fuelling an already perfect storm happening in our brains. There is little wonder why Ataxians report being fatigued, angry, disappointed, and frustrated.

Fear, shame, anxiety, fatigue, anger, disappointment, and frustration can drown us, or we can embrace our Ataxian warrior role, and strategically fight back.

The first powerful weapon we have in the fight is to see how this physiological-neurological-psychological stress storm works. If we can perceive it as a highly interrelated cycle, we can look for opportunities to break the cycle. Here are some ideas:

• Recognize your feelings of stress and verbalize them. Getting them into the raw daylight can help to size them up. Sometimes by saying it out loud it can help us to see that it is not as big-a-deal as what our mind has created. It is also a good way to start the conversation with others who are causing you to be stressed.
  

• Ask yourself some hard questions. Am I trying to be perfect like I was? Am I trying to do this stuff that is causing me stress, for me, or for someone else? Do I need to be perfect, or can I be ‘just good enough’? Remember, the research has shown that we may be misunderstanding how others are reacting to us because of the way ataxia can work in the brain. Cut yourself some slack.

• Live into ataxia by being proactive. Recognize what causes you to feel shame about being someone with ataxia. Sometimes it is not obvious but hidden within our own subtle behaviours. “I seem to be falling everyday, but I don’t think I am ready for a rollator.” There is no failure in using a mobility device, but there is failure in letting shame stop you from being safe and active. I truly believe that by being proactive and getting the support aids early allows us to learn how to use them efficiently and on our terms, not the diseases! None of us like being forced into something, but by choosing the supports you need before you can’t function without them can give you a sense of control which is like a stake in the heart of anxiety.

• Breath. Let’s accept that wise person’s advice about practising mindfulness. It’s cheap, you don’t need a prescription, and you can do it anywhere, including the middle of the grocery store. Just stop. Let your shoulders relax down. Take a big breath in and slowly let it out. Maybe say, “I give myself permission to be in this moment.” Let yourself feel the strength that is yours. If you need a little coaching on this, try the “Breath” app on the Apple Watch, or other smart watches.

Ataxia, like any disease, can rob us of our sense of control over our lives. When we feel that control slipping it feeds into the creation of anxiety. At the outset I described three ways in which ataxia impacts our control:

1. We feel anxious about the disease itself.

2. We feel anxious about how the disease affects our performance and lifestyle.

3. We feel anxious about how we are going to cope with the changes coming our way.

Our work as Ataxians is to bring some control to each of these things. By understanding how ataxia and anxiety related stress interacts allows us to succeed at living into it.