“Be kind, for everyone you meet is fighting a hard battle.”
Ian Macleren
I recently participated in the National Psoriasis Foundation and Healthline’s #PSelfie Photo Campaign. It is a wonderful social media initiative launched to support and empower those who are living with psoriasis.
I shared the below photo and received a negative response about it being a “joke” and that I’m not someone who “really has it.”
I’ve had varying degrees of psoriasis flares for more than half of my life. My skin has been 90% covered in spots and too uncomfortable to wear clothes. On the other hand, there have also been times where I’ve have complete clearance. Usually it’s somewhere in between and changes often. I’ve recently started to flare up again after being 95% clear throughout my pregnancy. This snapshot is currently what’s happening to my skin and it’s my experience to share.
Living with psoriasis isn’t a competition
True. It’s not the worst it has ever been, but living with psoriasis isn’t a competition!
Everyone has a unique experience with their psoriasis which gives them their own story to tell.
I made a decision to share that particular image because those spots were brand new. Hot off the inflammation presses!
These spots appeared overnight and they took form of the Little Dipper – which is kinda fun. I chose not to share the spots on the more intimate parts of my body. Or the flare that appeared on my healing c-section scar because of the Koebner Phenomenon. I didn’t share the ones on the parts of my post-baby body because I’m not quite ready to bare to the world. It was important to me to participate in the campaign because it creates awareness showing pictures of what real psoriasis looks like. I have guttate psoriasis, therefore my spots appear much smaller. But they are all over my body and every single one is sore and uncomfortable.
I know my own personal experiences and struggles with psoriasis, so I can brush off the insensitive comment. However, someone else may be discouraged to share and openly discuss their experiences if they think someone will have a negative response. Sharing your story can bring you confidence and allows you to connect with a community who understands what you’re going through. We want more people to be connected and supported because it’s common for people living with psoriasis to feel alone and disconnected.
I ask you all to be kind and supportive because sometimes all you’re getting is a small glimpse into someone’s personal journey.
You are amazing and continue to share your journey regardless of other people’s opinions xo
So very true! My medicine that I am taking I don’t look like I have it all, but it I stopped taking it I would be almost cover and crippled with the arthritis too. I am so inspired by you and thank you so much for sharing all that you do. It takes a lot of courage.
Good for you! Psoriasis breakouts come and go. Sometimes not too bad and other times simply terrible. We should be kind to each other; everyone’s experience is different and we should support each other!
Hi Joni,
I had the pleasure of meeting you at the psoriasis study at Chelsea Piers a few months ago. Congratulations on your baby’s birth and enjoy motherhood, it’ the best. I love reDing your blogs and unfortunately at this time my face is in full bloom and I’m devastated and don’t even want to leave the house. Any suggestions?
Best,
Lois
Sent from my iPhone
>
Hi Lois, So great to hear from you! Thanks so much, we’re head over heels in love with her and enjoying every minute. When I have spots on my face, I usually wash with a cream cleanser designed for dry skin, then use coconut oil as a moisturizer. For makeup, I use a primer then a tinted moisturizer with SPF and a light dusting of powder to seal it. It’s also going to be a beautiful day, get outside and get some sun, NYers are so wrapped up in themselves so I bet nobody notices. Best of luck, let me know if I can help with anything else 🙂
You ROCK, Joni!
Hi. Thank You for sharing. Ive also been suffering psoriasis since I was college. Til now, its really making me loose my self confident. Specially that I could no longer wear the clothes and dress I usually wear before, since my spots had been so very visible all around my two legs and even on my head in my hairline. But im looking forward to get the strength and energy to regain my confident.
I had tried all the medications and even rituals hoping that this will be cured but I guess the only remedy I can have to keep my head up high and show them I am still confident. though not this time, but somehow in the near future. Wanna hear more from you guys. Coz I feel like I had found my comfort zone upon sharing my experience with you.
Psoriasis is so frustrating. Then you get beep making stupid comments. It just adds to the frustration. I had people tell me my photos don’t look like psoriasis. Really? I agree with you psoriasis is not and should not be a competition. Psoriasis has made me hypersensitive. I’m a completely different person when my skin clears. My mom said it best, ” if you don’t have something nice to say, don’t say it at all.”
Since I was 13 years old I’ve had psoriasis all over my face, my scalp, behind my ears and on my neck, so I understand how horrible and painful it is. When I was a teenager I wore makeup to cover my skin and I was always painfully self conscious about it. When I got older I stopped wearing the makeup and tried very hard to accept that psoriasis was just something I’d always have to live with. Then one day my husband and I tried eating fermented pickles because we were trying to find ways to get more probiotics. Within three days of eating just one pickle and a little juice a day all of the symptoms of my psoriasis was completely gone. When I researched the internet about it I found that there’s a probiotic in fermented pickles that helps with both psoriasis and eczema. If I stop eating the fermented pickles the symptoms of my psoriasis comes back within three days. The only pickles that have probiotics in them are the naturally fermented ones like Bubbies pickles. At least that’s the brand we get. We also ferment our own cucumbers to make pickles sometimes and hopefully one day we’ll get the spices right. The pickles in the grocery store that have vinegar in them has no probiotics because vinegar kills probiotics. I know it sounds crazy and at first I was so shocked that something as simple as fermented pickles could take away the pain of psoriasis, but it really works. It’s been a God-send for me.
Hi Rose, so glad to hear that you found something that worked for you. I’ll definitely have to give it a try, I love pickles!