The Inconsistency of My Illness Causes Me Fear

By Ali Long

2 min read

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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Nicky Flikas Moderator
<inline-mention username="Ali Long" user-id="2106796"/> I can relate on this article so much. This condition can be exactly how you describe, inconsistent, unpredictable. When it comes to what causes the condition to go into a flare it is so hard sometimes to see what caused it to trigger. Some days I can be careful on what i eat and do, and those days I can be at my worst. Hope you are feeling well today. Thank you for writing this article. Nicky (Community member)
dmcclellan Member
You hit that right on the head, <img src="/content/images/2021/08/31/93afcde51c373add0f08ba3a7c06dcdf_medium.jpg" alt="My power-chair, my mobility " class="uploaded-image"/>
James Hollens Moderator & Contributor
This is so true, the inconsistency of our conditions makes it so hard to really plan things, I usually have to tell my friends I will let them know on the day so I can see if my body agrees with the plan - which doesn't often go down well! Really glad to hear you have made huge progress in your first 6 months of your medication lets hope the improvements keep coming and you can get yourself to both of those weddings and keep getting more of your life back! Sending love, James (Community Member)
Julie Vallortigara Moderator & Contributor
Hi Ali, Oh yes I relate very much to what you wrote there, the fear of missing out on events, the difficulty of planning and the challenge to handle the unpredictability. I remember going to a wedding of one of my close friend and being in so much pain...I ended up the evening with my friend asking around for some anti-inflammatory tablets so I could finally find some relief and enjoy the dancing! At that time, I was not taking any treatment with AxSpa, it was the beginning of my journey and it was tough. I hear you, and although some of the things you describe sound familiar to me, I was diagnosed later in life compare to you. So I have had already enjoyed the student life, the parties, etc. I can only imagine how hard it can be to deal with this whilst being young like you. I think you said something very interesting about the body and the mind not being in sync, that might be something to explore further. I can say now that the biologics has provided be with much relief of my symptoms and has given me back some control and ability to do many things in life without much unpredictability. I really hope it will the case for you further down the line with your treatment. But there's something else I think: our ability to accept, and then work on the mind-body connection. I believe in treatment like biologics, but also in a holistic approach to manage our condition. It's interesting sometimes how our will power, our motivation, our mindset can be a drive for some accomplishment with our body. Of course we have to listen to our body, but also observe how the body and the mind talk to each other. I wonder how much the fear, the stress linked to unpredictability, and sometimes the anticipation of a flare, might contribute to it at the end? I hope you get what I mean. I am just wondering here. Take care, Julie.