A graph line erratically hits highs and lows with bandaids patching it together.

The Inconsistency of My Illness Causes Me Fear

When it comes to chronic illness, no two days are the same. The inconsistency and unpredictability that come with a chronic illness is what gets me the most. One day I could be out and about, running errands, meeting friends, working out and the next day I'm bed bound, or visa-versa.

An example of this is last week I had a great week, I had high(ish) energy levels and my pain was there, but bearable. Then, out of nowhere, I wake up unable to move my right hip and right leg. I was limping and in pain all day. I had to use a crutch. I had plans to meet two of my friends. I was going to cancel as I felt embarrassed that I had to use a crutch. I decided I needed to do this, or I never would. I want to stop this illness from controlling my life, and rather I control this illness. Using a crutch, in public, is one of my ways of controlling my illness.

Like it never happened

The next morning, I wake up like none of that had happened. I don’t understand! I’ve stopped trying to understand the causes of my symptoms. Instead, now I just take the symptoms as they come. I track everything in my journal, hoping to find some patterns, so far, I have not.

I don’t know about you, but for me, this takes a toll on my mental health. I love to plan. I find since I can't rely on my body, I can’t make plans. Often, when I do make plans, I end up having to cancel. This disappoints them, but it disappoints me a lot more.

My mind and body are not in sync

In my mind, I want to do these things, I am able to do these things. I’m a 23-year-old woman, I want to be out living my life but no, I have to listen to my body or there will be severe consequences. I’m watching my friends and other people my age live their lives without these consequences. This upsets me. I then realize that there's no point in dwelling on things I cannot control, but instead I need to help myself.

Since starting Cosentyx over 6 months ago, I'm getting better and better each month. So, I think, in another 6 months maybe I will be able to do more. Maybe I will be able to do the same things as my friends, just with adjustments like resting, stretching, etc.

I would love it if my illness was consistent. I would love it if I was consistently well but that’s not going to happen. The inconsistency of my illness brings me a fear of the future. I think, what if I go do this and I feel sick, how will I handle this? Or for example, I have been invited to two weddings next year and while I shop online for dresses all I can think about is what if I’m feeling sick on the day, or what if I’m in too much pain or too fatigued to go.

I have many worries about the future, that I will go into more detail about another day. All of these worries are caused by the unpredictability and inconsistency of my illness. Can you relate to this inconsistency and fear?

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