A woman tries to concentrate through brain fog

Symptoms of AS Your Doctor Probably Doesn’t Talk About

Axial spondyloarthritis impacts my life in a lot of different ways.

Not all of the symptoms I experience are obvious to others. Many of them never get mentioned at my medical appointments, even though I have a very compassionate doctor who has a great understanding of our condition. But they are symptoms just the same, and as real as the back pain, fatigue, and psoriasis that first prompted my diagnosis. They’re just more likely to be suffered in private.

Mental health and AS

The links between depression and chronic illness are well documented, but we’ve still got a long way to go in legitimizing mental health symptoms in relation to disease.

Chronic pain is utterly depleting. Loss of function is isolating. Sleep deprivation, fatigue, and the inability to perform as we once did make people with AS sitting ducks for depression and anxiety.

For a long time I argued away my mental health issues because I saw them as a by-product of the pain and lack of sleep and not “real” depression. I didn’t seek help or cut myself any slack, I just pushed on through and tried to adjust to the lack of happiness and motivation.

If I had my time over there’s a lot of things I’d do differently, but getting better mental support is my top regret. If only I’d known there are psychologists who specialise in chronic illness and pain. Accessing their help could have made life so much easier in the early stage of my diagnosis.

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Lost in the fog

Losing my ability to concentrate or think clearly was a debilitating symptom I never really associated with AS. I often felt like my head was filled with cotton wool, and that I’d lost the level of intelligence I was so confident of in my younger years.

I never made the link between inflammation, sleep deprivation, medication, and the brain fog I was experiencing. I would simply feel ashamed of my stupidity when I missed appointments, struggled to find the right word or couldn’t keep up with my workload.

I read recently that the mental and emotional burden of living with a chronic illness literally consumes our brain capacity to the degree where we can’t think as clearly. Being unwell is both a physical and mental stressor which is hugely resource-heavy.

More than just tired

Fatigue is gradually becoming more recognized as a legitimate symptom of AS. I had been struggling with it for 15 years before I drew the dots between the two.

I always thought it was just my lousy sleep pattern leaving me so lacking in energy and motivation. It made no sense to me that even when I began treatment that allowed me to get through the night without waking, the sense of exhaustion remained.

I now understand that fatigue goes hand-in-hand with inflammation and is a common feature of this disease. At times it’s a tiredness that rest doesn’t help, because the exhaustion is a result of my body’s state of overdrive. All I can do is pull back, give in, and try to support my health as best I can. Pushing through only worsens fatigue, so I’m trying to learn to exercise self-compassion and put my own needs ahead of whatever’s on my schedule.

Discovering I'm not the only one feeling this way has helped

Connecting with others within the AS community has been really helpful to me in normalizing some of the less high-profile symptoms of this condition. I’ve learned a lot from others and most importantly no longer see these as inherent weaknesses I must try to overcome. I hope you can cut yourself some slack and seek out additional help of yourself if these are things you’re experiencing too.

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