The Guilt of AS (And Other Chronic Illnesses!)
I used to pack my days
Guilt that I’m not being productive. I used to pack my days full – of work, social plans, exercise – I was always on the go. That pace of life is distinctly in the past, and generally, I’ve learned to pace myself better. However, there are days when the fatigue or pain sets in, and I feel confined to the house and resting - and the guilt that comes with it is almost as bad.
Bizarrely, I feel like I’m being idle. Perhaps I could still do some life admin/work/be productive. I mean, if I’m watching this episode of Downton Abbey, surely I have enough energy?! No. That’s not how it works. I know I need the rest. Mentally and physically. But often, I still feel guilty about it.
I reschedule and miss things
Guilt that I have to suddenly reschedule plans or miss out on important events. This one is not only for patients, but family and friends, this is especially for your eyes and ears. To those who love us, thank you. We really don’t take you for granted. For anyone who has felt hurt or irritated that we’re changing plans/not attending so late in the day. Anyone who has found our sudden "flakiness" baffling. We get it. We really do.
I too am baffled by my body – that I felt fine this morning, even at lunchtime, and now I feel like a sack of potatoes that can barely string a sentence together. My body didn’t used to be like this – I’m still learning, trying to gauge this unpredictable condition. I also feel sad and frustrated that I am missing out on seeing you. That I’m missing a party. An engagement. A wedding. An important event in your life. In the past (and sometimes still), I have pushed through, and the result is not without consequences. Believe me, I would rather be with you.
I feel like a burden
Guilt that I’m a burden to my partner. My beautiful Kev. The girl he met was vibrant, active, easy-going and emotionally resilient. Financially independent. AS has hugely impacted my mental wellbeing, and sent my anxiety skyrocketing. I sometimes feel I’ve sentenced him to a certain life, that I cannot now be enough. AS forced me to rethink my long teaching days, I now need the flexibility and that means shorter hours and income. As an actor and singer could I do certain roles, a long shooting schedule? Kev is incredibly supportive and does not approve of my feeling guilty. And although he tells me I’ve nothing to feel guilty for, sometimes I cannot help but feel he’s been shortchanged.
Guilt that when friends ask me how I am, if I honestly tell you – oh, I’ve been running between hospital appointments, more scans, blood tests, scares, I’ve been struggling with the pain - that I’m being negative and a dampener on your spirits.
"Guilt is a wasted emotion"
Kathy, a favorite person of mine, often says to me that "Guilt is a wasted emotion." And more than ever that resonates. Guilt keeps you in limbo. This place of in-between, where you are unable to be productive or move forward. And the thing is, a good portion of this guilt comes from my fears of how I might be negatively affecting people, rather than reality.
In the last year, I have tried to work on my relationship with guilt. It’s not been easy. I’ve had to accept that certain things at certain times are beyond my control. When I am feeling good, that’s when I make sure I am being productive. When people don’t understand why I can’t do certain things, instead of feeling bad each time, I explain why I can’t and then feel more at peace. You can only do your best, and that my friends, is enough.
Do you use the word disability to describe your AS?