Welcome to the latest installment of our “Spotlighted Blogger” series.  Earlier this year, we focused on psoriasis bloggers, including Lissa, Alisha B., Jessica and Joni, and today we’re pleased to add a male perspective to the mix.  PatientsLikeMe member Simon’s witty blog, entitled My Skin and I, discusses his decade-long battle with psoriasis, a chronic autoimmune condition that can cause itching, rashes and plaques.  What has he learned along the way?  Find out that and more in our interview.

1.     Why did you start blogging about psoriasis, and what’s the reaction been?

I started blogging as a way to vent my feelings. I don’t really talk about my feelings, even to my family, and found it very hard to explain what was going on in my head and in my life.

When I spoke to people about psoriasis, I kept a lot back and, to write it, even if I hadn’t published it, was a release. I decided to make it public partly as I needed my family to understand what I had been going through and also to help raise awareness.

The reaction has been positive.  I have been told I made a few people cry and even had other friends suddenly announce they also have the condition. This showed me that I wasn’t alone and that there are many people that feel the same way and hide their emotions. I am quite pleased that I haven’t had much in the way of sympathy as that’s not why I started the blog.  The worst thing is people saying, “you poor thing.”

2.     You write about your “war with psoriasis.” Are you winning these days?

Ask me this question on different days and I might answer it differently each time. I would say generally yes, although I have lost a few skirmishes lately. The last couple of months have been extremely stressful due to personal and work issues, which hasn’t helped, and psoriasis clings on to moments like that. Also, with the cold weather in the UK at the moment, especially with the sudden freezing weather, my skin is quite sore and dry despite using my creams.

My skin is still at a manageable state, though, and even though it has got a little worse over the last week, it’s nothing I can’t handle. I just have the slight wobble, then think of Christmas coming, and there has been plenty going on lately to keep my mind occupied. The dark space that psoriasis occupies in my head is quite small at the moment.

3.     You recently joined PatientsLikeMe. What’s your impression thus far?

My first impression is good. I haven’t been that active on the site but then I haven’t done much on the blog either recently, or on my food blog that I also write, purely because I’ve been so busy. The people I have come into contact with through the site have all been positive and friendly, which is great. There is a time when the purely psoriasis groups/sites get a bit depressive, and I find myself backing away.

Psoriasis does seem to bring a lot of anger with it, and I quite understand that.  I just wish my fellow sufferers were a bit friendlier to each other now and then. And there are some who are brilliant; in fact, you have interviewed a few already. It is quite sobering to read what others go through, and this helps me get some perspective on my own condition.

4.     What advice would you give someone who’s newly diagnosed with psoriasis?

I would say make sure you see your doctor (GP here in the UK) and ask for a referral if you think your skin is bad enough. Find one of the many supports sites, like this one, which can measure your severity. But if the doctor can’t seem to help you, ask to be referred no matter how bad your skin is. Also persevere with the medication, as your skin is very unique to you and, just because one treatment works for one person, doesn’t mean it will work for you. Give them time to work and, if there’s no response, try something else.

The other thing is to talk.  It doesn’t have to be to your family or anyone close. The most important person is your doctor – don’t just show them your skin, tell them exactly how it makes you feel. If you can’t tell anyone, then write it down. There are many support networks out there with people who have the same condition and who will understand what you are going through. One last thing:  do not give up the fight.

““““““““““““““““““`

Want to hear how other psoriasis patients are dealing with dry air, cooler temps and other seasonal changes?  Check out our recent Patient Voice report on coping with psoriasis in the fall.  Also, find all of our blog coverage of psoriasis here.

Welcome to the latest installment of our “Spotlighted Blogger” series.  This spring we’ve been focusing on psoriasis patient bloggers, starting with Lissa in March and Alisha B. and Jessica in April.

Today, we’d like to introduce you to Joni (girlwithspots), a PatientsLikeMe member who writes a blog called “Just a Girl with Spots.”  How has she found acceptance with this chronic skin condition (which can cause itching, rashes and plaques) as well as the courage to wear a bathing suit?  Check out our interview below.

1.  Tell us about being diagnosed with psoriasis.

My diagnosis at age 15 was frustrating and dramatic. I was already super awkward – tall and lanky with a mouth full of braces – so to me it was the end of the world. The spots seemed to come on overnight and they took control of my skin. I felt self conscious and ugly all of the time. Even the word psoriasis felt ugly to me. I wasn’t comfortable talking about my skin condition to even the closest of friends. My friends and family knew that I had psoriasis, but not any of the emotions and stresses that I felt as a result of it.

At the time of my diagnosis, I didn’t understand why there was no magic pill that I could take and the spots would go away. Though told over and over, I also didn’t fully understand that my lifestyle and choices would help to play a large role in controlling my outbreaks. I played lacrosse and danced on the kickline, so I wouldn’t allow it to stop me from doing the things that I loved. But there were always the extra steps I had to take to cover it up to feel a sense of comfort – always two pairs of dance tights, leggings and long sleeves in the heat, extra make-up, etc. So even though I did the things I wanted, there was always something that held me back from feeling as carefree as a teenage girl should be.

2.  You’ve blogged about finding acceptance with psoriasis.  What are your top tips, and how does blogging play a role?

Not talking about my condition stuck with me until very recently, and it feels amazing to have finally let go of that internal struggle. Growing up with psoriasis was a challenge that I’m glad I had, it’s allowed me to find myself in a way that may not have happened otherwise. Blogging about living with psoriasis has been extremely therapeutic for me and is the reason why my skin is currently under control. It’s allowed me to get to know my skin on a deeper level and pinpoint what is and what isn’t working for me. My skin is always top of mind, but I always felt stressed and emotional about it, which was actually making it worse. Through a daily journal and blogging, my treatment plan is focused and I feel more relaxed than I ever have about my skin.

Psoriasis treatment is so much about trial and error; there are things that work wonders for others and would do absolutely nothing for me. It’s helped me to organize my thoughts and my own personal research to discover the right formula for me. For me, it’s eating fresh and organic foods that are higher anti-inflammatory, it’s exercising 3-4 days a week, using tea tree oil and heavy moisturizing creams and taking several supplements that I’ve found to be beneficial (daily multi-vitamin, omega-3 fish oil, milk thistle, turmeric, biotin, vitamin B-12, acidophilus). But I always find my biggest relief through the sun, so maybe it’s time insurance starts picking up the tab for my tropical vacations!

3.  I see you vacationed in Florida over Memorial Day weekend.  How did you cope with being in a bathing suit and “having spots”?

I had really wanted to find a new bathing suit for the summer that was white with red polka dots, so I could call it my new camouflage. I decided that instead of running from my spots, I needed to own them in my own way! But unfortunately I didn’t find one in time before I left for Florida! But even knowing and deciding that, I still had anxiety about being in a bathing suit. The past few sunny weekends had pretty much cleared up most of my upper body. But the spots on my legs have always been stubborn, so prior to the trip I had been treating them with a steroid ointment. That only left me with red spots and dark bruises, so not much better!

I decided the day before I left to stop stressing about it. I was going to Florida to celebrate the birthday of a close friend and I wanted to focus on enjoying the weekend, not hiding my spots. I posted about it a few days before I left and got several emails from friends with words of only love and support. I know that attitude plays a large role, but I also believe it’s necessary to only surround yourself with people who love you for you. And that doesn’t just go for people with psoriasis, that’s for everyone.

4.  What’s the most helpful thing you’ve learned at PatientsLikeMe?

PatientsLikeMe has shown me that I’m not alone in my struggles and feelings about living with psoriasis. Having the ability to connect with people who understand exactly what I’m going through has reinforced the reasons that I started my blog. People with psoriasis are always there to provide guidance, treatment recommendations, and most importantly, their love and support. If I can help at least one person with my blog, then I’ve done what I set out to accomplish.

Answering frequent questions about my own condition lets me track my progress and allows me to take a hard look at how my skin is reacting from day to day, week to week, month to month. PatientsLikeMe really understands how different conditions can affect your day to day health, but most importantly how it affects your mental well-being. You understand how important a healthy mentality is and the large role it plays in battling any disease or condition.

Welcome to the latest installment of our “Spotlighted Blogger” series.  This spring we are focusing on psoriasis patient bloggers, starting with Lissa back in March and Alisha B. a few weeks ago.

Today, we’d like to introduce you to Jessica Gough, a 19-year-old from the UK who recently started a blog called Jessica and Psoriasis.  What kind of reaction has she gotten?  And what tips does she have for those who feel isolated due to this chronic skin condition, which can cause itching, rashes and plaques (scaly patches)?  Check out our interview below.

1.  How are you feeling about being a newly minted “psoriasis blogger”?

The best word to describe how I feel about being a psoriasis blogger is relieved. I chose relieved because there is so much I have experienced throughout my psoriasis journey – both positives and negatives – that I wanted to talk about that even my closest friends and family were unaware of.  By writing my blog I have been able to explain all of my experiences without having to face the challenges of approaching the subject in general conversation. I have also found that by using my blog to share my journey with psoriasis it has enabled me to talk and share information with other psoriasis sufferers, which I have found warming and comforting.  Since starting my blog the support and feedback I have received has been overwhelming.

2.  Tell us how psoriasis affects your daily decisions – from shaving to clothing.

I believe with psoriasis you choose how much you let it affect your daily life and decisions. For me I would say my psoriasis majorly affects my decisions based upon the way I present myself for the day. If I wake up and skin has flared up or has worsened, I find I have to choose the right kind of clothes. I tend to wear leggings most of the time as the material doesn’t rub my skin and they are cool in comparison to jeans for example. Also if I want to wear a jumper I make sure I have a top protecting my skin underneath so my skin doesn’t become itchy.

Dependant upon the look of my skin also affects decisions such as whether I can wear makeup or whether I can shave my legs in the shower. If my skin is red and flaky I try as much as possible not to touch it with products that could make it worse. This includes shaving my legs, although if I am going out to a nightclub or party, though, I will plan in advance in order to make sure I can shave my legs, and I will use moisturizers to make my face suitable for makeup. Other than clothes and personal care, I try to make sure my psoriasis does not affect my decisions.  However, sometimes with a flare-up my mood can be worsened, and I tend to find things harder to cope with generally.

3.  What is your personal recipe for getting through a psoriasis flare-up?

My personal recipe probably has to be not to give up. When you have a flare-up, it is a perfect opportunity to put tips and techniques to the test, ask other people what they would recommend or go back to your consultant and ask for help. I do usually have a routine of making sure I have a bath every night to relax and then covering myself in moisturizers and creams before bed to help me sleep better. I also wear socks and gloves depending how bad my skin is to stop me itching and making my skin bleed. I find the more I itch, the more distressed I become, which obviously worsens the flare-up. So I try to stop it from becoming a cycle.

4.  Any advice for someone who feels alone or isolated due to psoriasis?

I think feeling alone is a common feeling amongst psoriasis sufferers, and I certainly felt alone before writing my blog. My advice would be to talk to other people, find out about chat boards, blogs and charities relating to psoriasis, and use these resources to share ideas, stories and experiences with others.  You may be surprised at some of the feedback you receive. I used to feel that even though I had support from many people around me, no one ever actually understood what I was really feeling and what I was going through. Talking to other people gave me the freedom to say how I really felt and not be embarrassed. I personally believe that talking with others about living with my psoriasis has been part of my therapy.

Welcome to the latest installment of our “Spotlighted Blogger” series.  So far, we’ve interviewed patient bloggers living with gastroparesis, type I diabetes, bipolar I disorder, Parkinson’s disease and ALS, and today we introduce Alisha B., who felt alone in her struggles with psoriasis until “coming out” on her blog, Being Me in My Own Skin.

Alisha is currently participating in the WEGO Health Activists Challenge, which encourages health bloggers to write 30 posts in 30 days during the month of April.  To make it easy, WEGO sends out a daily theme to tackle.  Alisha has risen to the occasion and produced inspired posts such as “Dear 16-Year-Old Me” and “I Do This for One Reason.”  How has blogging changed her?  Find out that and more in our interview below.

1.  Tell us about growing up with psoriasis – the physical and emotional impact.

Growing up with psoriasis was not an easy battle.  I was not only dealing with the regular stuff like puberty and body image, but throwing psoriasis in the mix made it a lot tougher. I’ll be honest, confidence was not something I had very much of as a child. Although, I was not a depressed child. I was considered the class clown or goofy one among my friends, but deep down inside I was hurting.

I just wanted to be “normal” and in my eyes that was a life without psoriasis. I may have been this confident chick to somebody from the outside looking in, but I stopped myself from a lot due to my condition. Now that I look back on my teenage years everything I did was virtually shaped around my psoriasis. The decisions I made, the activities I participated in, the events I went to, even the clothes I wore.

2.  What’s it been like “going public” about your psoriasis on your blog?

I started my blog in June 2011 after going to the National Psoriasis Foundation (NPF) conference. I remember sitting in a workshop they had about using social media to advocate for your condition. I had seen other psoriasis bloggers, and I remember saying to myself, “I can do that.” On the way home from the conference, ideas were flowing to my mind on different posts I could do, and it was a really great feeling.

Going public with my condition through my blog has been liberating! I wish I would have done this a long time ago. A lot of times I hid, uncertain of how people would accept my condition. But today, the more people I discuss my disease with, the more I realize that the things I was telling myself mentally were only because of my own insecurities. People are a lot more understanding than I could have ever imagined.

My outreach has also helped me to connect with other people dealing with psoriasis, and I no longer feel alone like I did just one year ago.

3.  What are the most helpful things you’ve learned from other psoriasis patients?

I met a young lady named Kasi at the NPF conference. Her psoriasis condition was equivalent to mine. Her skin was very visibly broken out. She was so confident with the way she walked and the clothes she wore, it really inspired me to stop hiding. Kasi as well as others at the conference really made me feel good and encouraged me. I’ve had this type of encouragement from family and friends, but nothing is like the inspiration that you receive from people who are actually living with this disease. Other psoriasis “conquerors” encourage me to not be ashamed and to embrace my condition.

4.  Tell us about the WEGO Health Activists Challenge and why you’re participating.

The WEGO Health Activists Challenge was suggested to me by the NPF. Doing the challenge is exciting because there are new topics to discuss everyday and I get to connect with other activists. I decided to participate in the challenge to bring more attention to psoriasis. A lot of people are silent about it out of fear of ridicule, and I was once one of these people. The more people who know about this disease, the faster the stigma will end.

Want to connect with and learn from psoriasis patients like you?
Join PatientsLikeMe Now! (It’s free)

Welcome to the sixth installment of our “Spotlighted Blogger” series.  So far, we’ve interviewed patient bloggers living with gastroparesis, type I diabetes, bipolar I disorder, Parkinson’s disease and ALS, and today we introduce Lissa, a PatientsLikeMe member who has lived with psoriasis for over a decade.  An early participant in our psoriasis forum room, Lissa appreciates the support of family and friends but has discovered an element of kinship through meeting other psoriasis patients.

Entitled Psoriasis Girl’s Point of View, Lissa’s new blog chronicles the ups and downs of recurring psoriasis outbreaks (which cover most of her body with itchy red plaques), working with a dermatologist and experimenting with different treatments and skin care regimens. Most recently, she explored UVB photo therapy and candidly showed the before and after photos of the initial results.  If you’re wondering how she finds perspective amidst these lifelong challenges, read on for inspiration.

1.  I see you first experienced psoriasis as a teenager.  How have things changed since you were first diagnosed?

You know how teens can be!  It was tough handling the criticism young people subject themselves and each other to.

My psoriasis became more of a permanent fixture on my body in my early-to-mid twenties, instead of coming and going as it usually did in my teens.  I suppose as the stress of being ‘part of the real world’ increased, so did my psoriasis outbreaks: working full-time in retail management and balancing going to school part-time, martial arts classes, and a relationship.  I eventually resigned from work in late 2010 to go back to college full-time and be a homemaker, with stress being an influential factor.  My stress level is fairly low these days, however the psoriasis remains uncontrollable.

My thinking about psoriasis has certainly changed.  When I was a teen, I didn’t really put any thought into the fact that this is something I will deal with my entire life.  I guess I just assumed it would be minor and come and go, not knowing that I would one day be 85% covered, with it affecting so many aspects of my life, including trying to treat psoriasis while trying to conceive!  It’s a struggle but I know I need to stay positive.

2.  Your blog conveys a great attitude. What is the most stressful aspect of having psoriasis, and what helps you to cope?

In my blog, I’m just being real, just being myself: someone who is learning to be positive.  I truly believe the mind is powerful, and while I wish I could just think my psoriasis away, I know that staying positive helps.

There are many frustrations to having psoriasis, and I’m sure they vary from person to person.  I get stressed about money and affording prescriptions and treatments, stressed about public interaction when it’s hard to hide my plaques.  But one thing that really gets me feeling like I’m spinning down a dark hole is when a medication or treatment seems to be working and it looks like I will finally get all the psoriasis to go away and then new plaques begin to crop up and quickly spread like wildfire.

I cope by talking to my husband and getting back rubs, trying to stay positive and keeping my mind focused on something else, like reading or cooking.  I also think it’s important to exercise to fight stress.  As far as providing comfort to psoriasis, a good lotion that’s geared towards itch-relief, is fragrance-free, and thick and creamy is the weapon of choice to slather on deliberately as often as necessary between topical Rx applications.  Other than that, gotta let “the attitude determine the altitude.”

3.  Great to see you updating your profile often. Which profile tools do you find most helpful, and why?

I like the charts.  I like having the ability to track my symptoms, my mood, my quality of life, and so forth to look for patterns and connections.  I find them all to be in-depth, and they ask good questions. I tried keeping a journal in the past to track my psoriasis, but this is better because it’s easier to read, all on one page, color-coded, and more detailed.  I also like the InstantMe tool.  It’s like a status update.

The community aspect is great.  Between the forums, personal messages, following people, commenting on other patients’ InstantMe [answers], and updating your own info, there’s a lot to do on the site. When I first signed up, I wasn’t expecting all the useful tools – I just thought it was a community.

4.  What have you learned from fellow PatientsLikeMe members? Anything that has surprised or inspired you?

I’ve learned that there are other people that have their good days and bad days, just like I do.  They worry about similar things that I do, so we can bounce things off one another, seek advice and solace in one another.  We’ve talked about treatments and medicines, lotions, make-up, and fashion, and how we relate these things to dealing with psoriasis.  I’ve been inspired by other patients to try to feel better, and to try to make others feel better too, help them stay positive.

It’s nice to know there’s a community of real people who truly understand how I feel.  My husband and friends and family are empathetic and there for me, but the other patients are people who really know what it’s like to feel the way I’ve felt.  I really feel like I can talk about anything to some of the friends I’ve made through PatientsLikeMe.

Want to connect with and learn from psoriasis patients like you?
Join PatientsLikeMe Now! (It’s free)