Coping with changes to my appearance

I had complete hair loss, skin discolouration, mouth ulcers, severe headaches, nausea, and fatigue. There was so much going on inside my body but having my outside appearance change was the tip of the iceberg. It made the cancer feel so much more real.

I didn’t realise my hair loss would be so extreme. I expected my head to go bald, but I didn’t envisage losing my eyelashes and eyebrows too. My skin became dark, and this coupled with the hair loss made me look so different to my usual self. However, I put the changes I experienced into perspective.

During treatment it was difficult for me to cope with the changes to my appearance that my treatment caused. I had a Hickman® line put into my chest for the intravenous treatment I was having. There’s no hiding from this, it was a constant reminder that I was a cancer patient. I had to be so careful it didn’t get infected. I couldn’t wear an open shirt or go swimming and I’d wear loose clothing so that people couldn’t see it sticking out and ask questions. The day it came out was a big relief!

With my bald head and no eyebrows or eyelashes, I felt the need to wear a disguise whenever I went out. For a while, big sunglasses and a hat became the norm. They gave me the confidence I needed to go out and live my life as normally as I could until I felt more used to my new appearance.

I work in customer service in a hospitality environment. I’m always facing the public and we have regular customers who know me, as well as my colleagues I see every day. When I returned to work, it was obvious I looked different. The questions started pouring in from people who didn’t know about the blood cancer. It was challenging explaining myself to everyone individually. Some people were really taken aback whilst others cracked jokes about cancer. I took it to heart at first and it impacted my confidence. I think part of it was a fear of being judged by a stranger who knew nothing else about me. I felt more comfortable talking to people who already knew what I was going through.

When I was struggling with the way people responded to my changed appearance, I put it into perspective. They don’t know what I’ve gone through. I’ve endured intense cancer treatment and if I can face that, then I could face the comments from other people. I developed the mindset where I didn’t care if people were looking at me strangely, they didn’t know my strength. It can be tempting to stay indoors and avoid socialising. To me, that felt like I was letting the cancer win. I wanted to be in control of my decisions, not the cancer.

I didn’t want blood cancer to define who I am, and I didn’t want other people’s reactions to define my own feelings about what I was going through. I detached myself from some of the things people said and decided I wanted to live my life as normally as I could, whilst having cancer.

The first two months that I was back working I wore a hat and glasses. One day, I said to myself, “you don’t need to disguise yourself anymore” and that was the turning point. I went into work that day and I threw my hat off and I begun to embrace the way I looked. I never wore my disguise after that, and I never looked back.

If this kind of attitude feels so far away from how you feel about your looks right now, that’s normal. Lots of people find it really hard to cope with a changed appearance, especially when it makes the cancer visible to others around them. I found it really tough at first but over time and in realising I didn’t want the cancer to dictate my life, it became easier.