What Living With Psoriasis Is Really Like
Psoriasis is a skin disease that causes red, itchy scaly patches, most commonly on the knees, elbows, trunk and scalp. It is not contagious.
Psoriasis is a common, long-term chronic disease with no cure. It tends to go through cycles, flaring for a few weeks or months, then subsiding or going into remission.
Treatments are available to help manage symptoms. You can incorporate lifestyle habits and coping strategies to help you live better with psoriasis, as stress is a big trigger for flare-ups.
Many people who are susceptible to psoriasis may be free of symptoms for years and years until the disease is triggered by some environmental factor. A common psoriasis trigger can also be strep throat…and that’s what happened to me.
I was diagnosed with guttate psoriasis when I was in high school at age 16 — I was actually very lucky I never shed, like many people shed with severe psoriasis or plaque psoriasis.
I was already terribly bullied for being overweight, so why not add on an autoimmune disease that leaves red patches all over my body, drawing even more attention to me.
I had no confidence what so ever. Such low self-esteem. I still have self-esteem issues I battle today.
I was getting over strep throat when I was a teen and woke up one morning with my entire body covered in red patches. I thought I had a reaction to the antibiotic I was on for the strep.
Literally the entire body from my scalp all the way down to my feet was covered.
I would do all I could to cover myself. To hide. I barely owned tank tops, short sleeve shirts and shorts back then.
Hiding myself in the summer, I felt ridiculous because I drew more attention to myself bundled up in the heat. I was miserable.
I hated my skin. I was so embarrassed. So embarrassed to be seen. Then it started to affect my nails, as if it couldn’t get any worse.
The anxiety having to go in public was really mentally exhausting.
Nail psoriasis would cause the nail to detach from the nail bed. It would start by the nail pitting and detaching at the cuticle first.
Sometimes it would start off with a tiny hole and get bigger by the day exposing my nail bed. It was so painful and then I felt I had to always hide my nails, as I would already hide my hands from the psoriasis covering it.
My dermatologist is known to be the psoriasis guru and he has been so amazing over the years. I have been seeing him since I was 16, and I am 38 and still have him treat me.
We had to go through a lot of trial and error to find the right medical grade ointments. Those can be very annoying because they are very greasy and messy feeling. It would leave grease stains on my clothing and sheets. Not to mention it’s very expensive, even with insurance.
We decided to try a biologic drug used to treat moderate to severe psoriasis and psoriatic arthritis. I responded very well to this drug. That put me in remission for a while. I had some random patches here and there, but my body was not covered—my legs were clear—at the time my legs were awful…it was so great to be able to shave my legs without bleeding from cutting all the patches. I was able to wear skirts, shorts and dresses.
I lost a lot of weight after high school and that seemed to help my skin, but I would still get terrible flares. I stopped the medication because it is a heavy duty drug and I wanted to wean off it and try something else. I would go twice a week to the doctor office for light box treatment and we found an ointment that seemed to help a lot.
Phototherapy or light therapy is typically prescribed by a dermatologist. Phototherapy involves exposing the skin to ultraviolet light on a regular basis and under medical supervision. That seemed to help, also natural sunlight did wonders for my skin and helped to clear it. It was amazing how well the sun cleared up the psoriasis.
Over the years I have tried my hardest to become more comfortable with it, especially since it is not as severe. I still would cover up with jean jackets, blazers and cardigans to cover my arms if we went out. When I was with my good friends and certain family members, I never felt the need to hide.
I was a hairstylist and I would be self-conscious about my arms every so often, but tried my hardest to just accept it already. I figured it is what it is and I can’t let this ruin my career.
You can also develop other forms of psoriasis over the years. There are five types of psoriasis — guttate, plaque, inverse, erythrodermic and pustular.
I had developed plaque psoriasis along with my existing guttate psoriasis. Not to mention developing psoriatic arthritis, which is common for psoriasis patients; up to 30 percent of people with psoriasis get psoriatic arthritis.
Psoriasis always made me feel so ugly, unfeminine and dirty. Made me feel like an outcast. When my depression was bad it really would really disrupt my life. I felt like I just wanted to never be seen.
Just the looks I have been given over all the years, the stares, the whispers, laughing or the rude comments from people who think it’s appropriate to ask “what is that on your hands and arms, it looks painful.”
The looks of disgust or the look of fear as if I was some contagious freak. That was probably the worst.
Somedays I do not cover up and then I have days I do, it depends on the severity at the time. It is a rollercoaster of emotions.
At 38 I still struggle with the psoriasis mentally and emotionally. I have come to terms it is forever, but you never get used to the awful flare-ups or people’s rude reactions and comments. Psoriasis is painful and uncomfortable.
The year I got married I had my psoriasis pretty controlled. I actually felt my best mentally, emotionally and physically. The arms yet again were still visible with psoriasis, but I was OK with it. It wasn’t severe.
We got married in Key West, Florida. We were out celebrating our wedding week. I felt so pretty that night…my long thick hair looked perfect, my makeup looked nice, I was wearing a short black sparkly dress and my sparkly black heels.
As I was walking to the bar for a drink this very nice gay man stoped me and said to me “I just wanted to stop you and say you are such a beautiful woman, and I am gay.”
I can not tell you how amazing that felt. Some stranger stopping me to say something so kind, not to criticize me and ask about my skin (yes, that has happened). Literally this man gave me the best compliment.
I gave him the biggest hug and thanked him! I felt ugly my whole life between my weight, then dealing with anorexia and bulimia and the psoriasis.
Some people would say “have you tried lotion?” Really? Is that a joke?
Or they would tell me their friend uses essential oils, or some skin care line. Maybe that works for others (I would be shocked), but the only thing that worked for me was medical grade products.
Some people had good intentions with this as they only wanted to help, but boy did this get old.
A month ago we were invited to our friends son’s birthday party in June. It was very warm and humid. I was skeptical of going. My arms were pretty bad at the time. I wore a short sleeve shirt and capri shorts. My legs were fine, but it was my arms.
Very red and very noticeable.
Our toddler was ready to leave and I was ready too and happy I made it through without noticing stares or comments from the guests.
At least I thought so. Before leaving for the birthday party I had torn my closet apart trying to find a summery cover-up to hide my arms. Then I looked in mirror and thought… no, I don’t care who stares. This was my best friends’ house we were going to and I didn’t care if the guests were going to stare at me.
I was talking with my best friend’s little sister, catching up as we haven’t seen each other in a while due to COVID. I went to hug her goodbye and then her husband was going to hug me and he stopped…. he made a disgusted face and said to me in front of everyone “what the hell is on your arms, is that poison ivy?”
He scooted back from me, and continued to carry on with insulting me and embarrassing me. I was so mortified. Not only was I mortified, I was upset he would be so rude and so ignorant to say that and act in such a cruel way when I have always been very kind and respectful to him.
It really took everything in me not to insult him. What kind of example would I be setting for my child if I did.
His wife looked so embarrassed because of his behavior. It was not her fault her husband acted that way. He was really setting a terrible example as a father.
My husband had to tell him it’s psoriasis and not contagious, then my husband made sure to say how rude he was and way to make me even more self-conscious. This is something I have endured for 23 years, and that reaction hit me really hard. I thought he was my friend.
I was so upset and so very embarrassed. I cried as soon as we got home. It really made me feel so disgusted with my appearance that he was just so appalled by me.
This is what living with psoriasis is like.
I have even had doctors ask what it was. How does a doctor not know?
We learned about psoriasis in beauty school, but you are telling me a general practitioner and OB/GYN are oblivious to what it is.
It is exhausting always having to explain my psoriasis. It’s exhausting having to explain I am not contagious and that it’s an autoimmune disease.
I wish I could just get dressed without feeling the urge to hide myself—there is no simply getting dressed— I have to plan it out depending on the severity of my skin.
I wish I didn’t have to blow off plans with friends or family and make up excuses, because I mentally cannot handle trying to hide and cover up, or the anxiety of people staring at me or making fun of me.
I have said before: children can be mean, but adults are worse. Mean, disrespectful adults raise mean disrespectful children.
People need to do better.
Some people have no manners and respect anymore and think they can say whatever the hell they want.
Didn’t their parents teach them not to stare, point or say rude offensive things to others?
All I can do is raise him to be kind and respectful.
Every person is fighting a battle you know nothing about. Just be kind. You have no idea how hurtful your words can be to someone.
Photo via contributor