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The Mistakes I Made While Working Full-Time With an Invisible Illness

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In March of this year I was elected into an exciting role, Vice President of Welfare at my students’ union. It wasn’t just a role I thought would suit me, but it was also an environment I had been really involved with throughout my undergraduate studies, so what better way to give something back? I was ready to represent students and make changes for the better.

My role began in June. I had a month of training, and was around people who had supported me over the last few years. All was going well.

What I hadn’t thought of, however, was how having a full-time job would impact my health. About a month ago, I become a bit “chesty” in my voice, and people at work started to notice I didn’t sound well. However, I didn’t feel unwell so I just carried on. This was mistake number one.

It wasn’t going away and I started to get breathless, but I just thought it was due to my long-term back pain – mistake number two. I chose to rationalize all of these new symptoms, and didn’t think twice about working.

However, three weeks ago I went to the hospital because I was in so much pain with my back. I couldn’t sit down and was also experiencing chest pain. After tests and some deliberation, the doctor said I have a chest infection. I was given antibiotics. Due to the fact that I couldn’t remember the last time I had a chest infection, I kept on working. This was mistake number three. I thought it would just clear up, but now I need more tests because things just aren’t going away.

Most of us would assume that health is a priority — and of course it is — but when you are battling with work, it is hard to know what to do. I learned very quickly that having a rare, invisible disease makes it hard to discuss my health because I “look” fine on the outside. It could easily seem to others that I am exaggerating or even lying. I learned that society’s views need to change and employers need further education to understand how to talk to and support those with invisible illness.

Invisible illness deserves the same amount of care, attention and respect as any other condition.

Those mistakes I mentioned, they are mistakes that I now understand, but didn’t realize I had made at the time. They are mistakes that would have been rectified if I had a few days off and some proper rest, but the anxiety about telling my employer was overwhelming, and I honestly felt scared to bring it up.

Situations like these really highlight why we all need further education about rare diseases  and disability, because being able to talk openly with employers isn’t just necessary for our mental health, it means everything for our physical health as well.

Has your rare condition impacted your work life? Let us know in the comments below.

Originally published: September 16, 2019
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