Speak Clearly: Perspectives on psoriasis
Despite having psoriasis since I was five, it wasn’t until my early twenties that I really started to understand how my lifestyle impacted the way I treat my psoriasis.
Years ago, I was attending a dermatologist appointment when I was presented with two routine forms to fill out. The first was a questionnaire to determine my PASI score (Psoriasis Area and Severity Index) and the second was a DLQI (Dermatology Life Quality Index), a questionnaire designed to measure the health-related quality of life of a patient suffering from a skin disease like psoriasis.
What to expect when asked about your quality of life
In these forms, I was asked a series of questions that weren’t just about my skin symptoms, but about how my psoriasis affected my daily life. I remember seeing questions like:
- Over the last week how much had my skin influenced the clothes I wore?
- How had my psoriasis affected my social behaviour?
- The last question really struck a chord: Over the last week, how much of a problem had the treatment for my skin been, for example by making my home messy, or by taking up time?
How my lifestyle effected how I treated my psoriasis
At the time, I was at university and suddenly life, and everything about my routine, was so different. Those go-to treatments I once used to rely on became the ones I avoided because they no longer fit into my day. I found myself skipping my scalp treatments as they needed to be left in overnight or took too long to rinse out. I even stopped applying my creams, as I was often getting in too late, and it was easier to just go straight to bed.
Rather than thinking about changes I needed to make, I simply stopped using treatments and my psoriasis inevitably got worse. Fast forward a couple of years and I was back at the beginning of a treatment process again. At this consultation, however, I explained my life routine and how it was creating barriers to certain treatments. This time my routine was very different—I was working a full-time job so I had limited time in the morning to wash off treatments but was around in the evening so I could be more consistent with evening treatments. My employer was also very flexible, so I now had the option to attend hospital appointments more frequently.
At the appointment I broke down the key factors of my daily routine and with my dermatologist we were able to work together to explore new treatments that would be more suited to my lifestyle, ones I have since been successfully able to incorporate into my life.
The dialogue between you and your doctor or dermatologist can often feel like a one-way street at times where you present your problem and in return, they present you with a treatment. It can feel alien to provide context around how or why certain treatments may or may not work. However, it is so important that you do. There are so many different treatments out there—some are quickly applied when needed, some are applied at night and left on for at least 12 hours. Some are administered at hospitals, some at home.
Questions you can ask yourself
As with anything psoriasis-related, not all treatments will work for you and your lifestyle so it’s important that you ask the relevant questions when it comes to finding treatments that work best for your lifestyle.
To help you prepare for your next appointment, here are a few questions I found myself asking in relation to my lifestyle:
- How does the treatment fit in to my daily routine?
- Are there any easy changes I can make to make a treatment fit?
- Does it need to be applied in the morning, the evening or both?
- Is it a cream/ointment? If so, when does it need applying?
- How messy is it and how will this impact my chores at home—more washing?
- If it’s a treatment administered at the hospital—how often are appointments and for what duration?
- Do they offer early morning, lunchtime or later in the day appointments? Do they offer the treatment at home?
- Where can I fit this into my working day most easily, and can the appointments be planned close to this?
- Are there any side effects? Are they likely to impact any parts of my daily routine?
Treatments are there to help, and as with psoriasis, everyone responds differently. To give those treatments the best shot at working, you need to be aware of the hurdles you might face and work with your health care provider to ensure you’re getting the right one for your lifestyle. For tips on how to start these conversations with your doctor see our customizable doctor discussion guide.
Get clear with your doctor
You deserve to feel confident in your skin, but how do you have a clear conversation about your psoriasis goals with your doctor? Sometimes speaking up can be the hardest part.
Your voice makes a difference
Be clear about your goals. The power to speak up, feel confident and demand the best care is within you. Sharing your story could be your next step to feeling free from psoriasis—and possibly inspire others to do the same.