You Are Not Alone
Living with psoriasis or psoriatic arthritis can be hard. It often helps to hear from other’s experiences so that we know we’re not alone. This section highlights stories from women just like you on living well with psoriatic diseases.
- Learn how to be comfortable in your own skin. Don’t hide. Be informed.
- Practice being gentle and forgiving with yourself.
- It’s a daily struggle, but holding your head high and focusing on the little improvements you make really helps.
- Don’t be afraid to ask for help and do not let anyone shame you because you have a disease
- Don’t be so hard on yourself.
- Don’t hide yourself. Everyone has issues, yours just happen to be visible on your skin. If people ask questions about your skin, take the opportunity to educate them.
- Remember that you might have psoriasis which is just a part of you but it’s not all of you! It’s hard sometimes to look beyond the skin and pain but just remember you are more than just skin.
- Love yourself. Psoriasis does not define you as a person. If someone doesn’t understand it, explain it. If they don’t accept you, they are not worth it.
- It does get better with treatment and proper diagnosis.
- Find women you can trust and learn to love yourself and your body.
- Get to [a] skin specialist as soon as possible – and talk to as many people that have psoriasis on what works for them.
- Holistic approach: clinical, lifestyle, social.
- Trust yourself and self-advocate. No one else will help you but yourself.
- Keep trying every day and never give up no matter what.
- Keep pushing for a good dermatologist and/or rheumatologist. Also learn to meditate and control anxiety and stress.
- Never give up on your treatment. Reach for your goal. It’s possible to be symptom free.
- Educate yourself about psoriasis and be prepared to talk to others to educate them.
- Do not be put off by the medical profession in getting the initial diagnosis.
- It is a mistake to bear this burden alone. It is best to share. Be consistent with your treatments. Also, do not belittle your personal experience with this disease. Even a scalp patch can erode a happy day. You don’t have to be covered in psoriasis for it to be a difficult problem.
Living with Mild-to-Moderate Psoriasis
My name is Laura and I have been living with plaque psoriasis since the age of five, almost 40 years. It is mainly on my scalp, arms and legs. My knees and elbows are the most stubborn and my legs have some scaly patches. It used to be itchy when I was younger but now it no longer bothers me.
Growing up with psoriasis wasn’t easy emotionally and physically, especially being in grade school. At such a young age, I didn’t really understand what I had and back in the day, I was a child labelled with a “skin disease”. I was constantly feeling embarrassed because of my skin and hiding behind clothes, even on the hottest summer days. No one understood what psoriasis was and almost automatically thought it was a “contagious skin disease”.
I wasn’t allowed to go swimming with my classmates and I remember my parents taking me to many doctor appointments and getting notes that I was ok to swim and to interact with others. I did have moments of “why me” and I remember crying with my mom because I was “different”. Despite it all, I was lucky to have a great family support system and even at such a young age, I had friends who never really questioned what was on my skin and were accepting of me.
As I entered my teen years, I started having more self-confidence and realized that psoriasis would not define me. After numerous doctor appointments and trying to get as much information on the disorder, I started to focus less on my skin and to accept who I was. I knew true friends would never judge me and, in some way, I ignored how psoriasis made me feel.
Over the years, I tried many types of medication. I remember my mother putting greasy ointment and wrapping my arms and legs with saran wrap. I also had smelly tar on my body and head. I think I tried almost all lotions from shampoos, salicylic acid and cortisone-type ointments. Out of desperation to have clear skin, I even purchased products from infomercials.
My parents even took me to Italy to try to find a “cure”.
As a result, some of the treatments made it worse, others worked for a while but once the skin got used to it, the psoriasis was back. I did finally find a treatment that works – for me, it’s phototherapy. I am lucky to have easy access to a dermatologist who has the lamps and I try to go three times a week. So far, my psoriasis has cleared up by 90%; however, I still have it on my scalp and I choose to live with it. I know what type of hair products irritate my skin and I just avoid them.
In 2016, I also had an acute episode of psoriatic arthritis. Ever since, it has acted up but not as badly and I became more aware of my triggers (like stress) which I try to manage before it gets out of hand. However, I can’t control the weather, so there are times that my joints will swell and I have some stiffness. This is my reality and I try my hardest not to make it ruin my day when times are rougher.
For anyone living with mild to moderate psoriasis, you need to know that psoriasis treatment is not a “one fits all” solution. You need to look at different treatment options, listen to your body and see what might work for you. Don’t bring yourself down and don’t surround yourself with people who look at you and see only your skin. Accepting who we are and getting educated, so that we, in turn, can educate others makes a big difference. I wish my family had a better understanding that psoriasis is an autoimmune-related disorder and not a skin disease.
Having a good relationship with your dermatologist is equally important. If your doctor does not take the time to listen to you and quickly prescribes you a treatment without explaining the effects then I would question them or try to get a second opinion. It’s important that your doctor monitors your progress and can provide you with additional insight on newer treatments that are out there.
Lastly, what has helped me cope is joining groups on social media or connecting with others who live with psoriasis because it brings me comfort knowing that I am not alone. I am not ashamed of my skin and every opportunity I get I try to educate others on what psoriasis is and what it’s not.
Tammy Waddell first became acquainted with CPN last fall, when her dermatologist, Dr. Doug Keeling, who is also an Assistant Professor at Dalhousie Medicine New Brunswick, invited her to participate in a medical student round table discussion. He asked her to tell her story about living with psoriasis.
“I was diagnosed at the age of 10, and I’ve been through it all with this disease,” says Waddell. “When I went to Doug I was 73% covered, and I needed a break. Now I’m managing the disease with the help of a biologic, and I’m less than 1% covered.”
Now Tammy is a regular volunteer with CPN. Tammy says volunteering is just in her blood. She runs the local food bank, has been a volunteer firefighter, and as a teenager she volunteered for the Special Olympics.
“I like to help others, and I hope that sharing my experience with psoriasis will help others who might be afraid to be themselves because of it. I tell people: this disease is outside of your control – you might as well just be you.”
“With respect to psoriasis, a lot of people hide it. They don’t want to talk about it. That was never me,” says Waddell. “When I see someone with tattoos, I think…you’ve got your marks, and I’ve got mine. If you’ve got questions, just ask me. It’s okay.”