Like cheese on a pizza, this disease oozes into every part of my life. It affects my mental and emotional well-being. I often feel anxious and depressed at how difficult psoriasis is to treat. Psoriasis impacts my social life. I’ve avoided showing my skin publicly in gyms, pools, and beaches. How I’m feeling about my skin dominates my decision to go out to a social gathering or not. A psoriasis flare or a stranger’s stare reminds me that I’m still living with this painful disease. The invisible aspects of living with a visible, chronic skin disease show up in my everyday life. Here’s a journal of a typical day for me living with psoriasis.
9:05 a.m.: Waking Up Late
It’s another frustrating start to the day. I wanted to wake up earlier but couldn’t fall asleep until after three. My skin might be feeling raw and more irritated due to the ultraviolet light treatment two nights ago, but I’m not sure. Maybe tonight I’ll take the antihistamine the dermatologist prescribed to address itchiness and induce sleep, although I don’t want to feel groggy for my meeting early tomorrow morning.
11 a.m.: First Virtual Meeting
I’m a bit anxious about my first meeting today. I don’t feel prepared, as my low energy levels have prevented me from focusing. I wish I had been more productive yesterday, but I just couldn’t get my mind going. I heard a cup of coffee makes up for an hour of sleep, but it doesn’t send emails or meet with colleagues. I can get through it okay, but I want to do more than that. I’m also tired of virtual meetings. With the pandemic I understand the benefit of video calls for work, but I feel self-conscious on Zoom. Can people see my baggy, tired eyes or the psoriasis on my forehead and the edge of my scalp? I guess I can blur and touch up my video, but it doesn’t feel great.
12:30 p.m.: Deciding What to Eat for Lunch
I need to eat before my afternoon schedule. But meals have been such a struggle. I should stop buying chips and frozen processed food. Grabbing a soda or junk food when I’m feeling low energy or down doesn’t help either. The doctors tell me I need to watch my diet: Psoriasis raises the risk for other health conditions, and my doctor says I am already prediabetic and have elevated cholesterol levels. But eating better is easier said than done. I’ll just make a sandwich for now and work out a healthy meal schedule later.
1:30 p.m.: Making Sure I Have the Medications I Need
I’ll get to my work emails soon, but I’ve put off calling for my biologic refill long enough. Last time the specialty pharmacy gave me the runaround — so irritating. It’s exhausting to make so many calls and have my medication arrive late due to some malfunction in their computer system. I get why health insurance companies require prior authorization for these expensive drugs, but why should it fall on me to spend so much time getting it sorted out? It’s been a few weeks since I canceled three doctor appointments due to a COVID-19 exposure while traveling to visit my mom and dad. Too bad that lifelong psoriasis inflammation might be associated with some of my other health conditions that demand my attention now. Maybe I should set up a virtual appointment.
3:05 p.m.: I Need a Nap But …
I need to get ready for my next meeting, a short drive into town. The person I’ll be seeing wants us to take a walk while we talk. I know the exercise is great for my overall health and will help with my elevated blood sugar and cholesterol, but I don’t want to get sunburned in the 90-degree weather and flare my psoriasis. I guess I can wear long sleeves, a sunhat, and other clothing that covers my skin — and makes me look a little out of place — or I can put sunscreen on.
7:40 p.m.: I Don’t Hate Washing Dishes
Lori cooked again, so I should do the dishes. The eczema and psoriasis on my hands and nails, though, are cracking and bleeding. Wearing gloves helps protect them from the hot water, but my skin can’t breathe. I hate that I can’t contribute more to chores and that Lori must pick up the slack. She has enough on her plate as it is.
10:45 p.m.: Putting Off My Shower
Wow, I’m drained from the day. The thought of doing my ultraviolet light treatment, showering, moisturizing my skin, and putting on topical medication feels overwhelming. But if I don’t get started now, I won’t be able to get to bed early enough. Maybe I’ll just binge watch another television show first. I could also take that antihistamine to help me sleep — yet another decision I’d rather put off. (I ended up not taking any sleep aids and went to bed later than I wanted again.) What’s a typical day for you with psoriasis? Is there anything in your daily routine that you would want to change? You can read more about my experiences on my website, PsoHoward.
title: “How Psoriasis Impacts Daily Life” ShowToc: true date: “2022-11-26” author: “Ruth Friedman”
A dermatologist presenting at the event asked attendees, how is psoriasis impacting your daily life? My brain lit up as I thought about my answer. It’s a question I’ve continued to ask myself. The pharmaceutical company AbbVie sponsored my trip to this three-hour educational event, during which dermatologists and patient advocates addressed the chronic skin diseases psoriasis and hidradenitis suppurativa (HS). I expected the discussions to center around scientific advances and the latest treatments, but most focused on quality-of-life issues. I was saddened to hear the results of a survey that found that almost 9 in 10 respondents reported that psoriasis affected their emotional well-being. I am part of the nine. I desperately wish I wasn’t, but psoriasis continues to impact me more than I’d like to admit. Those few hours in a hotel near Central Park transported me to a place where I could really consider the influence of psoriasis on my everyday life. As I list three quality-of-life concerns underscored at the event, and strategies for coping with them, I ask you to think about how living with your chronic illness affects you. RELATED: Facing My Anxieties During the Coronavirus Crisis The stories, though, took a positive turn. With increased education, support, and better treatments, patient advocates found purpose in helping others, pursuing goals, and actively participating in their treatment decisions. That has been my experience too. Psoriasis has led me to speak up for myself and others, and to find meaning in supporting others in their journey. If you’ve sustained personal losses because of psoriasis, you are certainly not alone. But through it all, patient advocates have exhibited great courage and hope. Their stories show me anyone with psoriasis can lead a fulfilling life with the right support and mindset. RELATED: 8 Ways to Boost Self-Esteem With Psoriasis
Finding Emotional Well-Being by Connecting With a Support Network
As I think back on what I heard during The Science of Skin, a few words describing the emotional impact of chronic skin disease stand out: shame, isolation, self-blame, and unpredictability. The vast majority of survey respondents with psoriasis reported experiencing depression, embarrassment, and feelings of helplessness. The impact of a condition like psoriasis on a person’s emotional well-being cannot be overstated. I still go through low periods with psoriasis. At the end of last year, I went into a period of isolation and stopped sharing on social media or writing blog posts for months. When one dermatologist at the event stated almost anyone can be clear of psoriasis with current treatments, I realized one reason I’d felt down was disappointment that my skin wasn’t clearer. The event helped me address my emotions — not directly, but through interacting with others. Withdrawal had separated me from my support network. Talking to others with similar experiences gave me the strength to identify and address my feelings. The statistics and stories reveal how many of us with psoriasis face challenges to our emotional well-being. Positively addressing the shame or self-blame is a great first step toward wholeness. RELATED: Social Anxiety: The Invisible Symptom of Psoriasis
Overcoming Isolation by Turning to People Who Understand What You Endure
Chronic skin conditions can impact social interactions with others. A psycho-dermatologist at the event noted how people with visible skin conditions can become worn down by the negative reactions of others. She stressed the great need to tackle the isolation that those with psoriasis and HS often face. A patient advocate shared how she shied away from dating and intimacy, fearing the moment she would need to reveal her skin to a potential partner. I thought back on how the psoriasis on my hands and scalp caused me to avoid shaking hands or going for a haircut. Social interactions can become ordeals for those with chronic skin conditions, making it more difficult to build lasting, deep, and meaningful relationships. The other day I saw the bright sunshine out my bedroom window and decided to wear shorts. But when I stared at the psoriasis on my lower legs I thought twice because I didn’t want to deal with the stares or wonder if others would pull away from me. The Science of Skin event ultimately reminded me that there are people who can understand what I endure and support me through it. How does psoriasis affect your daily life? How can you better manage those challenges and treat your psoriasis more effectively? You can read more about my experiences in my blog for Everyday Health and on my website.
