Are We Frustrated About the Same Things?
I spoke this week at a psoriasis event in the UK. Talking to other people at the event was interesting. We talked about our fears and frustrations. It reminded me that we have entirely different challenges at different stages of our journey.
At the moment my biggest frustrations are leaning towards the visual. I am getting married in 6 weeks, and my psoriasis is starting to flare with the stress of planning and with the transitions of the seasons. So my current frustrations are:
- Flaking around my hairline into my hair
- Lesions spreading along my back (my dress is backless at the top)
- Lesions appearing in my eyebrows and my eyelids- will my makeup sit ok?
The unpredictable nature of psoriasis is frustrating
When will it happen again?
The fear that I feel as I type this tells me it still holds its power over me. I know it is irrational, but I feel it is not. It feels utterly justified. But really, what if it happens again? What will happen? Will I lose my mind again? Will I lay crying in bed scratching as I count the minutes until I can get a hold of the drugs I need? Will I beg the dermatology nurses to let me have an emergency appointment?
I even have a plan. And yet I am still afraid.
This fear comes from the unpredictability of the disease. There are clear triggers for me, a strep throat is the most significant. This leads to full body coverage of both plaque and guttate psoriasis. The guttate refuses to be appeased with the application of topical steroids. It is the black sheep of my psoriasis family.
Dealing with my daily lesions
There are the daily frustrations too, of living with a continuous run of plaques. These for me are more manageable as I have lived with psoriasis my whole life, I am familiar with its ebbs and flows. I know the consequences of a bottle of red and the consumption of tomato and garlic pizza.
The everyday plaques are still challenging though, they force me to adapt my wardrobe, my morning and evening (and sometimes lunchtime) routines. They still affect my confidence and decisions on what to do to unwind. They can affect dating and sex and even how I wear or color my hair.
They permeate every aspect of your being.
What the World Health Organization says
The World Health Organization (WHO) states that people living with psoriasis have a variety of needs that extend beyond the visible lesions, and they highlight that research should be based on patient-relevant benefit endpoints. Data published by Blome et al. (2011) demonstrates some of the patient's needs the WHO is referring too. These include having confidence in therapy, having no fear the disease will become worse, requiring less time for daily treatment and to feel less depressed.1,2 I have to agree.
Frustrations over time: Physician notes from 1968
This month I attended a presentation by Helen McAteer, the Chief Executive of The Psoriasis Association (The U.K version of the National Psoriasis Foundation). Here she read notes from the first meetings of the Organization. In the first-ever meeting, they discussed itching, and how it can lead to a lack of sleep. How it rarely features in clinal outcomes and that there is a need to understand the impact of itching in more detail. The focus of the fourth meeting was anger.3 These are still very much frustrations we still suffer from today.
It is incredible to think that with all of the medical advances since 1968 that we still face the same challenges.
How about you? Have you thought about what your frustrations are?
How often do you experience brain fog?