How You Can Use Your Knowledge of Your Illness to Navigate Your Job

Today I sat down and asked myself how I was feeling physically. You would think this is something I ask myself a lot when dealing with long-term health issues but the thing is, you get used to feeling a certain way when you feel that way every day. It becomes your new normal and you stop recognizing it as anything else. It’s a coping mechanism – I mean, who needs to be comparing themselves and thinking about how wonderful it would be to feel fully healthy all the time? It can be soul-crushing to think about that too much, especially on the rating of one days, and I completely advocate for working within your own parameters and whatever is normal for you rather than comparing to others. But… when you also have no choice but to work, it can be a healthy habit to check in with yourself every so often, without judgment about where you are on your own scale of managing, pain, discomfort or whatever other scale works for you.

For me, I am so used to feeling tired and slightly foggy in the head somewhere on my scale even on a good day that I rarely think to ask myself how I’m feeling. I rarely take the time to ask exactly where I am on that scale. But when I do, I normally discover things about myself or am able to apply what I already know about how I manage to better help myself on that day and make better decisions. The simple act of checking in and assessing where I am on a scale of mental exhaustion, physical exhaustion, discomfort, how I feel about my mental health is a great tool.

If there is one thing I’ve learned over 18 years of living with chronic illness it is many of us over-estimate what we can do. I don’t know how it is even possible to do this but I still imagine I can do 100 things in one day, when I can’t remember a time in the last 18 years when that has been the case. We are so good at playing tricks on ourselves that way. But we also under-estimate ourselves too; we make assumptions about the way things have to be done and by doing so we under-estimate what we could be capable of if we did things differently. For me, a large part of that is learning to work with and not against the ebb and flow of an unpredictable illness. There is a word in my life that I have a difficult relationship with: consistency. So much judgment comes up for me just hearing the word because we hear it all the time in the world of work, in the business world – how you have to be consistent and bow your heads in shame those who cannot be consistent with your work and exercise and duties as a family member or member of society.

My life is not consistent or predictable. I am not able to form habits in the simple way other people talk about creating habits and my ability to undertake certain tasks can be a disaster one day but complete poetry the next and I don’t tend to know when those days will be or if I will have a run of those days together.

So that’s what I don’t know and what I can’t control; so what do I know, what can I control?

Well, I know how I feel in that moment, on that day. I know from my experience of days like it:

• What tasks are going to be off-limits completely
• What tasks are going to be better for me to complete or even easy to complete
• If this is a day I need to rest completely
• If this is a day I need to ask for help
• What I need in order to work
• What I need in order to recover quicker
• What will help me most
• What will hinder me most

That knowledge is power when attempting to hold down a job even just for our own use, but think how powerful that knowledge is when you are able to share that with a boss you trust. I understand that not every boss is open to help, my experience has been 50/50 on that score and has ranged from the worst managers imaginable to the absolute best managers I could have asked for. But I genuinely believe a big part of what made those good managers so amazing was me sharing with them how I work best. By sharing that knowledge as I navigated my good and bad days. That open communication allowed me to manage my work on different days and allowed my managers to see I could manage my own time and workload for myself. It built trust and respect and a great working relationship.

If you are wishing that you had a boss that valued you like that I really want you to know this… you can and do have value as a warrior-worker. Please do not let a couple of unhelpful or downright nasty colleagues or managers scar you for life. There are good people out there who will see all you have to offer given the opportunity.

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Stay classy, warrior workers!