Royal Pharmaceutical Society

Cancer recovery: the hidden disability

by Professor Ruth Edwards, Head of School of Pharmacy, University of Wolverhampton

Relationships can be changed a lot by cancer. My journey with breast cancer has permanently changed me and those close to me. But cancer isn’t over once treatment stops.

Why? Partly because no-one can tell you you’re cancer-free. Bad memories are triggered by all sorts of things, especially visiting hospital: walking into the clinic - and even the room where you were given your diagnosis - inevitably brings it all back. You can get what’s known as ‘scanxiety’ as you wait for the results of your regular check ups, nothing can relieve it, as you have experienced the worst outcome in the past.

Side effects of long term medications can take their toll too. In fact, recovering from cancer is the same as having a non-visible disability.

Hiding it

Many people with a disability will do everything they can to hide it. When I returned to work five years ago, physically I looked well but my emotional recovery had only just started. I decided to go back full time from the start, which I now know was a mistake. I thought I could cope, wanted to ‘get back to normal’ and felt guilty that others had been taking on my responsibilities for so long.

Workplace support

I now wish I’d been challenged on that decision and that an honest conversation had taken place about my needs. Proactive support would have made such a difference: regular opportunities to catch up and share without judgement if things are going wrong. If you’re already feeling vulnerable and feel you can’t show it, then asking for help is even harder.

We need to find ways to establish a culture where disability can be openly discussed without fear that it will impact negatively on how capable you’re perceived as being. Regular check-ups with occupational health did prove helpful and provided the stepping stone to changes that I needed.

Equality

I felt more confident when I understood that under the Equality Act, a person diagnosed with cancer is automatically classified as disabled. It protects them from discrimination, which continues even when there is no longer any evidence of the cancer. So even if your cancer has been treated successfully, as an employee you continue to be protected against discrimination.

Allies

If you want to help someone with cancer - or any disability - ask them how they want to be treated and then listen to what they have to say. Then you’re in an open and honest place. Don’t feel awkward - your efforts to reach out will be appreciated. And don’t assume what they need, as what suits one person with the same condition might not suit another.

I’m now in a place where I feel I can be much more open about my situation. Every experience is personal, but a lot of learning can come from them as well. I’m learning every day.

We want to encourage voices that express the diversity of lived experiences in the profession as part of our inclusion and diversity work. If you’d like to share your story, contact [email protected] or get involved through our ABCD group.

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