‘I thought people had to be pretty to work here.’ I acted like I wasn’t bothered, but I cried the whole night.’: Woman with psoriatic arthritis says she ‘isn’t defined’ by her condition

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“I have plaque psoriasis and psoriatic arthritis. My psoriasis was diagnosed almost seven years ago now. I was diagnosed with serve plaque psoriasis and my face, scalp, genital area, legs, arms, and belly button. I was diagnosed with psoriatic arthritis just under two years ago, and it mostly effects the right side of my body—mainly my feet, knees, and finer joints. I still vividly remember getting psoriasis. I had just started my third year at college and noticed a small red mark growing above my left eyebrow. It was no bigger than a penny, but it was different to anything I had seen before. As I wasn’t sure what it was, I went to the doctor after a few weeks when it didn’t go away. I’ve always had various skin issues, from adult acne to shingles, and lots of rashes and reactions, so it was common for me to have something going on with my skin.

Courtesy of Jude Duncan

My doctor thought it was just another reaction and that it would die down soon with some cream. I went away and started using the cream, not particularly worried—I was used to this by now. I would get a reaction or rash, the doctor would give me a cream, and it would go away. However, this time when there was no effect, I stopped using the cream and thought it would clear up eventually. I wasn’t worried about it at the time, and thought it was just one of those things you got while growing. But the patch didn’t go away. After a few months, I decided to go back to the doctor as it was getting bigger and new patches were appearing in different areas. That is when I was told I had psoriasis. I was given another cream and told to try it. I was so confused, I didn’t know how to spell psoriasis at this point, never mind understand what the condition was, or the lifelong effect it would have on my body, mental health, and self-esteem.

Courtesy of Jude Duncan

Again, this cream didn’t work and I kind of gave up on it. It was one small bottle-cap sized patch on my forehead, and I wasn’t bothered about the condition at first, even though it was on my face. However, in the run-up to Christmas 2013, just after I was diagnosed, I had a member of the public approach me as I was working in a retail store. I still remember this moment as if it was yesterday. Whilst serving the customer, she asked me what was on my face and pointed to my patch. I was mortified and tried to brush it off, speeding up the sale to ensure the encounter ended quickly. It was at this point she looked me right in the eyes and said, ‘I thought people had to be pretty to work here.’ I was devastated by this comment and it deeply affected my confidence. I wanted the ground to swallow me whole, I couldn’t believe what happened. I said nothing. I finished the sale and turned to my manager who had been beside me, she looked shocked. Neither of us could believe what had just happened. She asked if I was okay and if I wanted to take some time in the back. I refused, put on a brave face, and acted as if I wasn’t bothered. I cried all night as a soon as I got home.

Courtesy of Jude Duncan

It was then I became very insecure about my psoriasis. I was fearful everyone was looking at it and judging me for it. It became a very lonely place for me to be—I felt no one understood what I was going through. I was heavily depressed, filled with anxiety, and hated myself. This started a vicious cycle of being depressed, anxious, and stressed out with my skin—which would cause more psoriasis patches to appear, each more angry and red than the last. This led to me feeling more depressed, anxious, hating myself, and wanting to hide away, which only made the flaring worse. I eventually decided I wasn’t going to let this comment get me down anymore. It didn’t happen overnight, but eventually I decided if anyone had an issue with my skin and how I look, it is a reflection on them and not me. I never wanted to be known by or defined by my psoriasis. This is a condition I have and I’m living with, but I am certainly not defined by it. This sounds like my condition never gets me down anymore, which is false; I can still feel ashamed of my skin and like my body is letting me down. When I do feel like this, I acknowledge my feelings, as they are completely valid, and I work on why I am feeling that way—whereas before, I would have wallowed in the self-hate for days, weeks, or sometimes even months.

Courtesy of Jude Duncan

In November 2014, I moved home from college. Heavily depressed and my skin getting worse, my mom and dad convinced me to go and see a doctor. I remember my dad sitting at the doctor’s with me as I lied and said everything was okay; he went on to explain it wasn’t. I am so lucky to have had the incredible support of my family during this time. If it wasn’t for them, I may not have sought the help I really needed at the time. During this doctor’s appointment, almost a year after my initial diagnosis, I was finally referred to a dermatologist to receive oral treatment for psoriasis. I was also placed on anti-depressant medication, which I still take to this day. The next four years were spent trying many medications, all in hope they would clear my skin and rid me of my patches. Though I was successful with many medications, they never lasted and my psoriasis patches came back angrier, redder, and itchier than ever before. I no longer talk publicly about what medications I had tried and not tried. This is because psoriasis is such a complex condition which is individual to everyone. What works for me might not work for you, and medications which gave me side effects might not for you. It’s important you work with your medical professional to find what is the right method of treatment for you—in some cases, it may be no medical treatment at all.

Courtesy of Jude Duncan

Something amazing did happen in those four years, though. I fell in love with myself—psoriasis and all. I found self-acceptance and self-love and went on this journey where I felt so comfortable with who I am as person. If it hadn’t been for my conditions, I don’t know if I would have gotten there this quickly. As I said above, I still have wobbles and down days, but I take them in stride and validate my feelings. It was all going amazingly. Then, it felt like I went straight back to square one. In 2018, my skin had pretty much cleared. I had a few small patches here and there, but it was nothing in comparison to what it had been. In the summer of 2018, I started a new job and, well, it all went downhill from there. I was incredibly stressed and hated my new job. It wasn’t right for me, but I was determined, stupidly, not to give up and just get on with it. My skin started to flare like mad—missed warning sign number one—and I was slowly becoming covered again. Everything itched and my patches were red-raw from scratching. Then I experienced a new symptom. Something I had never had before. Pain. And lots of it.

Courtesy of Jude Duncan

I put it down to sleeping funny or hurting my back. But the pain grew increasingly across my body. It got so bad, even lying down hurt. My whole right side was stiff. I could barely walk a few steps in front of me without wanting to cry, and would go to work covered in heat patches to try and ease the pain. My work at the time wasn’t very understanding, and I continued to soldier on as if nothing was wrong—despite crying in the bathroom because of the pain. Eventually I was able to get some time to go to the doctor and I was referred to rheumatology right away. Thankfully, due to a cancelled appointment on New Year’s Eve, I was able to be seen fairly quickly, and thanks to a wonderful doctor who was so empathetic and understanding, I was diagnosed with psoriatic arthritis. I was so relieved to finally have a condition. To be able to say, ‘This is what’s wrong.’A lot of the time, when your condition is invisible and involves pain that people can’t see, it can be pushed aside or seen as overreacting, which is completely exhausting within itself, never mind having to deal with the condition on top of that. Two years on I am still very much adjusting to life with an invisible illness that flares every so often. It can be tough to deal with mentally, but I always remember my own advice. Practice what you preach, and all that!

Courtesy of Jude Duncan

My advice to those with chronic conditions is to, firstly, see your doctor regularly! If something isn’t working, keep going back until you get something that does. I know this can be exhausting and feel like you are getting nowhere sometimes, but it will be worth it when you get a solution that works. Secondly, you are not defined by your condition. So many people believe their condition is all people see and it can be so hard to change the mindset—I know, I’ve been there. Just remember, you are living with, not defined by, your condition—and if anyone says otherwise, then that’s on them and not you. Finally, if you look in the mirror and are constantly saying negative things about your condition or appearance, start saying something positive about yourself afterward. Do this each time, and eventually your positives will outweigh the negatives. As humans we can be our own worse critics, but this is one small step I took to help change my mindset!

Courtesy of Jude Duncan

I hope from this story people understand they are living with and never defined by their conditions! I constantly remind myself of this for all of my conditions. I am more than how I look, my skin, my autoimmune condition, and mental health conditions. They are part of me and they shape who I am as a person, but they did not define me—I am so much more than my conditions.”

Courtesy of Jude Duncan

This story was submitted to Love What Matters by Jude Duncan of Glasgow, Scotland. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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