For many years, I thought being a leader was about having all the answers. But knowing things is the least interesting and, dare I say it, least helpful part of my role. This has been especially true since work and home have collided (beautifully), with my 20-year-old daughter living with psoriasis.
I expect we have had a typical journey to diagnosis – fraught with long delays, frustration and concern, driven mostly by the unpredictable nature of the condition. 18 months on, and we are still awaiting a formal diagnosis. GPs have been helpful, but contradictory with advice. Ultimately, the reasons for flare ups are unknown. Efforts to limit flare ups have added stress around eating, sleeping and exercise – all to try and control what is ultimately uncontrollable.
The merging of the personal and professional has been a gift. Our experience is not unique, but nor would I say it’s typical – it’s just ours, much like everyone else’s with a visible difference.
Watching (and supporting) my daughter navigate her visible difference, I have noticed that a flare-up itself doesn’t necessarily affect her confidence. But a comment can. Sometimes it is the smallest thing someone says, rather than how severe her flare up actually is, that has the biggest impact. It can be difficult to watch. I feel protective and quietly annoyed on her behalf. I am always proud when I see her simply shrug something off.
I’ve also seen her wear what she wants, refuse to cover up and talk openly about her skin. I have been genuinely moved by her confidence. But confidence isn’t fixed. Sometimes you feel comfortable in your skin, and sometimes you don’t. That isn’t failure, it’s just how confidence works.
Professionally, it’s given me real insight into the work we do, and why it’s so important. An understanding of how fluid confidence and identity are for someone living with a visible difference, day to day.
Psoriasis
- Psoriasis is an immune condition which causes patches to develop on the skin.
- Psoriasis appears as raised patches known as “plaques”. These can be flaky and/or scaly, appearing very red on white skin and dark on black or brown skin.
- Psoriasis is not contagious.
- Psoriasis affects 2-3% of the population and it is equally common in men and women.
- For some people, having psoriasis can take a significant emotional and psychological toll.
- If you are struggling with psoriasis, there are a number of Changing Faces support services available for you .
If I’m honest, I’m not sure my daughter entirely connects with the term ‘visible difference’. There have been many articles written about terminology in this sector, which I’m not going to repeat here, but language matters. I’m sure the transitory nature of psoriasis contributes to this.
At Changing Faces, we are working hard to ensure our services connect with people, no matter the perceived severity or permanence of their visible difference. The ‘condition, mark or scar’ is not the point. It’s society’s focus on appearance and the negative impact that this has on millions of people.
The assumption that people need to be fixed causes isolation, discrimination and abuse. The discrimination isn’t always obvious, and with concerns over appearance often linked to vanity, it can feel hard to raise as a concern, both within ourselves and to others. I recognise this personally. We’ve launched a series of webinars to help people to easily access expert opinions and connect with others who feel the same, as well as online groups where people can connect in a safe and supportive space.
The merging of the personal and professional has been a gift. Our experience is not unique, but nor would I say it’s typical – it’s just ours, much like everyone else’s with a visible difference. But the theory and interventions, the language and nuance that is intrinsic with the visible difference sector are brought home, quite literally! It means I’m probably left with more questions than answers, but that’s what makes my professional role more interesting, after all.
