You might think you are helping by taking things away from me but you’re not. You are further knocking the confidence of somebody who is already fragile from their chronic illness.

An event happened to me today that reminded me of something worse than living with chronic illness itself. The issue of people thinking they are helping by taking opportunities or responsibilities away from you.

The background

I have been on a two year Leadership course at work but keeping up the last year has been tough. Firstly, my son came along in January 2019 and then around the same time this current ongoing flare started. I made the decision when we started a family that I wouldn’t take work home with me. This also meant no assignment writing at weekends – I value my family time. With this, I started to get behind due to the hospital visits, health setbacks, pain and sleepless nights. This wasn’t such an issue until my run of really poor health since November 2019. If work attendance is a challenge, you certainly can’t find time to squeeze in extra-curricular activities like the Leadership course.

The decision

The last couple of weeks I have started to get back on my feet. Although I am still getting physical setbacks and bad news (See: An upsetting post to write – an update from the Biologics appointment), I am back to working full weeks and feel stronger than I did. So it came as a shock when I was unexpectedly told I was being placed on a ‘learning break’. Admittedly, I can understand the decision and perhaps I should have challenged it more. But you don’t have the confidence you once did when struggling with your health and mood.

Much was wrong with the way in which the news was delivered. The two minute conversation that started with ‘this might sound cold but…’. That I wasn’t involved in the conversation about my studies. Or overhearing my assessor refer to me as ‘the sick one’ when identifying me to their colleague in the classroom (there’s nothing wrong with my hearing, you idiot!). Yet the worst thing about this decision was the classic notion that this was taking pressure off of me. That it was somehow good for me.

Don’t be afraid to ask first

You worry about all manner of things when you have been through what I have over the last year. Your job security, value at work, finances, pulling your weight around the house and generally being a burden on everyone. When people then start trying ‘to help’ by removing responsibilities and taking ‘pressure’ away from you, although well intentioned, all they are doing is fuelling those growing insecurities. You gain little by taking things away. You are essentially removing ownership and opportunity by this action, not to mention impacting one’s sense of pride.

I want to be involved, show my worth and belong when I’ve been through a poor run of health and off work. Work gives me something to focus on, to take my mind off of the pain, to try and achieve. Don’t take things away and knock my self-esteem even more because you assume it will help – as with all due respect, I know what’s best for me better than anybody else.

Only I have lived every minute with me. I am the one fighting my battle with chronic illness.

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Arthritis and Psoriasis Patient Advocate, Writer And Consultant. Owner Of The Pain Company.

I share my story of Juvenile Idiopathic Arthritis to raise awareness and specialise in pain, parenting (with disability) and the mental health impact of living with chronic illness. I write and campaign for leading charities and organisations. In addition, I provide patient experience consultancy for both charities and global healthcare companies.

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