Psoriasis

The Original Diagnosis. It’s Psoriasis.

As I suspected in one of my latest posts, a new flare is coming or I should say is happening. It feels like my spots are doubling overnight and the urge to scratch is intense. I have that helpless feeling of not knowing how bad it will get or how long it will stay.

When a new flare starts, I always think back to the first one.

In the spring of 1998 when I was 15, I thought I was having allergic reaction to spring and the spots were just hives. I’m allergic to most of the outside world – grass, certain trees, pollen, etc. But overnight I was covered in red, scaly spots that completely took over my body. I had spots covering my arms, legs, chest, stomach, back, and scalp. The dermatologist confirmed it was psoriasis.

I figured he’d write me a prescription for a pill or some cream and I’d be clear in a few days. In my head, I was already thinking about what I’d wear to cover it at school and then I’d be back to shorts and tees in a few days.

But when the doctor started saying things like “try this first” and “could work” or “might work,” suddenly I was faced with trying to understand this FOREVER disease. I couldn’t believe there was no magic pill or cream that just made it go away. But nevertheless I was given the first of many topical prescriptions to “see how I’d do.”

Topicals and light therapy were my first treatments.

The original topical prescription didn’t work, the second and third didn’t either. After months of trial and error with topicals, I was getting light treatment 3x a week. I didn’t have my license yet, so a huge shout out to my parents and grandparents for getting me there. The light box helped immensely and within a few months, I went from red, intensely itchy spots to pink, dry and healing spots.

Being a teenager with psoriasis was hard.

image1-2
Prom dress to cover the flare on my stomach, back, and legs.

It impacted my confidence in ways I’m still learning to understand. It really affected the already hard relationship with my body. In my mind, if the rest of my body and features were perfect, then it would make up for the spots. I was mad at my body for doing this to me. I was embarrassed about my skin. Pictures don’t really exist of my early flares. My skin was either covered, or I just didn’t get in the picture. I was stared at a lot, so I stayed home when I would have rather been at the beach with friends. I had an incident with a grouchy lady who scolded me about coming out in public with my “chickenpox.” I was young so I didn’t stick up for myself. Instead I cried and went home.

Looking back over the past 23 years, so many of my major life events and accomplishments were made living with psoriasis. Proms and boyfriends. Graduating high school and college. Building my career. Getting married and and having two incredible daughters. It’s really important to me that my daughters see me being proud of who I am. Psoriasis has helped me grow into the person I am today. Though it still sometimes affects my confidence, I’ve accepted my diagnosis. I’m grateful it’s given me a different purpose in life to advocate and introduced me to a community of inspiring people.

I’ve grown up with psoriasis. It’s a part of who I am today.

I do have to wonder how accepting I’d be of my original psoriasis diagnosis if it came later in life. Tell me in the comments when you were diagnosed with psoriasis and how you felt after the diagnosis.

12 comments

  1. Well done you for writing this post. I grew up with psoriasis and knew nothing else so was quite familiar with stares and questions but you still never get used to it or feel less alien. I’m going through a flare up at the moment and you’ve given such an uplifting view on our spots, so thank you.

  2. Joni we met at Chelsea Piers and I sat at your table and I want to congratulate you on the birth of your baby and also wish you a wonderful 1st Mother’s Day. I was at Botanical Gardens last week and was hoping to see you but unfortunately I did’t but got some samples and interesting literature. I first developed psoriasis when I was in my 30’s and it started with a patch on my elbow and now I’m still suffering and I’m 72 and I now have breakouts on my face which depresses me and there on days that I hibernate until it clears up, I hope our paths will cross again and enjoy your precious bundle of joy.

    1. Hi Lois,

      Thank you, I’m loving every single day with my little lovebug and had such a special Mother’s Day.

      I’m sorry I missed you at the walk!! It would have been great to catch up, next time!

      Thank you for sharing your story, I hope to see you soon.

      Best, Joni

  3. Damn!! I just wrote a long message in order to honor all of you, but somehow … it’s gone, anyway. Thx Joni for all your posts and thoughts! As you can see, me, far away in the Austrian Alps, I’m always happy to read from you 🙂 So please go on & all the best! .florian

  4. Hi Joni its Chris…

    So I’m not sure if Mom told you or not. I started going to a dermatologist about my psoriasis. She gave me cream (don’t have cream in front of me)that I used twice a day for weeks. First appointment she gave me injections on my legs also, plus laser treatment. I did the laser for a few weeks. They wanted me to come during the week for more Laser, but with work,home stuff I haven’t been able to do that. About a month ago I went and she said now I have to switch medications cause it does reverse effect on the psoriasis?….I was kinda like what the heck. Well she was right it went right back to the way it was….then gave me meds to use twice a day, then original meds only on weekends! When Alex was born 8 years ago it started….it’s on my feet which I was happy to say months ago, that finally I can wear sandals this summer, but WRONG. I’m 64 and when I read your story,I feel bad you’ve had it longer then me and I’m complaining.

    Well just wanted to give you my update…. Baby is beautiful! She’s got daddy’s eyes🌹🌹🌹🌹

    Sent from my iPad

    >

    1. Hi Chris, keep working with your dr to find the right treatment. It’s a lot of trial and error, but you could also try seeing if eliminating any foods helps (sugar, gluten, alcohol, etc). I don’t think the length of time matters, psoriasis is annoying regardless of when you get it. I think having it for most of my life may have helped me since I’ve had to grow up with it and it’s just a part of me.

      Thank you, we can’t get enough of her beautiful smile❤️❤️❤️

  5. I’m 62 and have just gotten diagnosis of psoriasis this month, July…The doctor said that psoriasis can flare up after strep throat, which I had at the end of May and that it might go away for good, but could be chronic. I’ve been struggling with first, oh…it’s not just going to go away with some medication. Then, oh, I really need to get sunlight on my legs and torso (arms aren’t too bad and I figured that’s due to sunlight exposure.) Then came the embarrassment…oh, I live in the city…there are natural places to go where I can expose my body and legs to sun, but there are always people around to see my spots…Yesterday and today I finally went out and sat with legs fully exposed, many people walking by. I guess I’ll be hardened gradually to the embarrassment. It is very difficult. Oh yes, I have a girl friend that I hike with who I told about the spots, etc. She asked if she could see them. I am trying to be more open about the whole thing, so said, are you sure you want to see this? I showed her my back and when I turned back she had a bit of a horrified look in her eyes….I said, “it’s not contagious you know”, at which she backed off…she definitely got a bit more sympathetic.

  6. I just found out I have psoriasis this week at the age of 23. For some reason 2 dermatologists misdiagnosed me over the past two years (thinking it was fungal) but in the past couple months I figured out I had psoriasis from researching online. I put off going back to the doctor I guess to put off getting the diagnosis confirmed. But here I am covered in sticky goo hoping it helps clear me up some. While was in the dermatologist I know someone got diagnosed with terminal cancer so I have to stop to be a little thankful though I was still discouraged. I will say I think this is a much easier time for me to get psoriasis than it would have been as a young teen. I am married (although I wasnt when I first started having the undiagnosed rashes) and am a mother. I hate that I have big rashes that are hard to hide, but I am much less self conscious at this point in my life! I cried in the car after my doctors but my husband smiled and said “I love you even though you’re crusty”… and we laughed! I’m so thankful for him! Looking forward to figuring out what treatment is best for me! Thanks so much for your blog! 🙂

  7. This is a brilliant article. I’ve just been diagnosed in my 30s, which has come as a shock 😦 Like most sufferers I undersrand that there are ‘worse’ diseases to have but it’s still very distressing. I’m trying to stay positive by reading uplifting blogs like your own 🙂

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