It started at 17...
When I was 17, I got really sick, soon after I developed psoriasis. I had large patches covering both my legs at first. I was too scared to say anything so I hid it. At 17, your confidence is shaky already and this made things so much harder for me.
A few years later, I developed large, itchy patches on my back that were different. My doc had no idea what was happening, she had to spend an hour doing research, after a test for strep throat was positive, we learned of a different type of psoriasis from untreated strep. After antibiotics that part cleared up, but I was still left suffering.
I was eventually diagnosed with psoriasis and given creams and a shampoo to use since the psoriasis at that point had spread to my entire body. Head to toe I was covered, I was itchy all the time, flaky, embarrassed.
To top it off, I had to take 2 showers everyday and because I would get home late from work, my showers would wake my mother. She would get mad at me for waking her up, as if I had a choice. She made me feel guilty about something I had no control over. To put it lightly, I was traumatized by this disease very early on. Eventually, I got my skin issues down to my knees and elbows with the occasional spot here and there.
Learning to accept my psoriasis
I discovered that sunshine and swimming in a chlorinated pool helped me the most. I learned to manage it fairly well and learned to live with the embarrassment. I remember one day being at a bus stop and I could hear 2 younger teenagers behind me whispering about the red patches on my elbows, saying "I wonder if it's contagious." For a moment I was embarrassed and hurt and then I said F it. I turned around and told them it's called psoriasis, it's a skin disease that causes these red patches and it's not contagious. They looked embarrassed and from then on I didn't worry about my skin anymore.
I had a disease and I couldn't help it. I would even joke with people who asked me "omg what happened to your elbows?" I would say with a straight face, "oh I was riding my skateboard and hit something and went flying and got this crazy road rash." Their faces of shock and amazement was everything lol. They would say "Really, OMG?" Of course the answer was no, with a grin. I use humor to make light of my illnesses and other disabilities because it's all I can do to make it not seem as bad as it can be.
Progression from psoriasis to psoriatic arthritis
7 years ago, after a really stressful time in my life and being sick, I found out my psoriasis had progressed into psoriatic arthritis. I am 42 now and have been suffering most of my life. I learned that this runs in my family. My aunt, my grandfather, my sister and my niece all have or have had psoriasis. It was already in my body just waiting to be activated.
Lifestyle and treatment changes
Unfortunately, I wasn't one of the lucky ones. I have learned to live with it. I have tried every cream, ointment, oil, lotion, herb you can think of. I have resisted the pharmaceutical approach besides creams because frankly all of those immuno suppressive meds scare me. The side effects are terrifying. I've had docs tell me they're safe even that they don't have side effects, which is a lie. I can't imagine causing my body anymore harm than I already live with in the hope that this med will work. It's just not worth it to me at this time. I may not have a choice one day, but for now I manage.
I quit drinking alcohol, I quit smoking, I stopped eating meat and dairy and do what I can naturally to manage my symptoms. I still suffer everyday, some days worse than others, but I'm still fighting and waiting for the day they find a cure or at least a medication that's side effect free (mostly).
My advice for people with psoriatic arthritis
My advice to anyone newly diagnosed or still struggling to accept it, the people who care about you, the people who are worth it in your life, won't care. They don't care about some red patches, they don't care if you need help putting cream on your back, they will love and support you. No one can truly understand what its like unless they live with it, but the people that matter, care about you and your skin is a part of you.
After all these years having tried nearly everything, my other advice is diet and what you put in your body plays a huge part. All those things I mentioned I quit? Those all make it worse. Sugar, gluten, cold weather, hot weather, dry climate, they're all triggers too. If you can eliminate as many of those triggers as possible, exercise, avoid perfumes in laundry soaps and body washes, you will probably be able to manage it better.
It sounds like a lot and it is. It's overwhelming and exhausting but over time you eliminate one or 2 things and just keep going. There will always be flares, there will always be times when you ache or feel fatigued, but you just keep going. Keep doing your research and keep trying new things. Our bodies are constantly changing and we have to change with it. I don't wish this disease or psoriatic arthritis on anyone, it's debilitating on so many levels but you are still alive and worth fighting for. You are still a human who deserves happiness. Never stop fighting.
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