Confession: I have an Autoimmune Disease

13 Mar

I’ve thought about writing this blog post so many times over the past three years.

I’ve sorted carefully through the words in my head, trying to figure a way to properly express the multitude of feelings that come with a psoriasis diagnosis. Even now that I’ve committed to finally talking about it, I can’t quite figure out a way to describe the shame and despair caused by a flare up.

I’ve been living with plaque psoriasis for over a decade, but it has taken me so many years to even say the words out loud to my closest friends.

Psoriasis is an autoimmune disease that causes red, scaly patches to appear on the skin – typically on the outside of the elbows, knees or scalp, but it can appear anywhere on your body. Psoriasis is believed to be a genetic disease; however researchers do not completely understand how the disease is passed through generations. About one-third of people with psoriasis report that a relative has the disease. If one parent has psoriasis, their child has about a 10 percent chance of having it. In my family, my maternal grandfather has psoriasis.

I had my first flare up about 15 years ago.

I have always had dry skin and when my scalp started feeling a bit itchy, I figured I had dandruff. I mean, I’ve seen those commercials… a little itch and white flakes on your shoulders meant you just have to pick up a bottle of special shampoo, right?

psoriasis, autoimmune diseaseSo, I used the special shampoo and that seemed to work for a while.

What I didn’t know is that unlike a normal dry skin condition, psoriasis has triggers for when it flares up. Stress is one of the most common triggers, especially for women. Inflammation is the body’s way to cope with stress and when you have psoriasis, your immune system responds to the stress by over-responding.

For me this results in the most common form of the disease, plaque psoriasis.

What may be somebody else’s dry scalp is my own private nightmare. It’s not just an itch; when I’m having a flare up it’s almost a constant uncomfortable burning and tickling sensation. It’s not just a couple dry flakes either; it’s raised red patches, covered with a silvery white buildup of dead skin cells (called scale).

Basically it’s like dry skin on crack.

Except it comes with a huge batch of emotions…

Due to this disease I have felt: shame, out-of-control, disgusting, unattractive, depressed, and as if I had a dirty secret that I could never share. I would try to time my haircuts to fall in between flare ups, because I imagined my stylist recoiling in horror if she parted my hair and saw what was lurking underneath. I wanted to appear attractive to the world, but I was forever trying to hide what almost felt like a monster trying to emerge from my own body.

I could be fine for months and then suddenly a flare up would start and last for even longer. I am very lucky and only have mild psoriasis on less than 3% of my body. Typically it is contained to my scalp, under my hair, but occasionally I will find a spot somewhere else on my skin.

When it was at its worst, I’d wear my hair in a ponytail and avoid dark-colored shirts. If flakes did break free, I was mortified. I tried so many different medications from my dermatologist and was incredibly frustrated when I couldn’t find anything that seemed to work for me.

There is no cure. There is no magical pill that fixes everyone with this disease.

Through the years, I’ve figured out what works for me. I still have flare ups, but now I have a better idea how to treat them.

I’ve started talking about it too.

I realize now that psoriasis isn’t a punishment for something I’ve done. I’m not the Beast from Beauty and the Beast, or the Hunchback of Notre Dame. My autoimmune system is just out of whack. I can manage it.

It’s taken me almost 15 years, but now it’s just a part of me.

And I can deal with it.

 

Source for statistics: psoriasis.org

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41 Responses to “Confession: I have an Autoimmune Disease”

  1. Ashley F March 13, 2014 at 9:30 am #

    I’m proud of you!

    It’s crap that you have to deal with it but there is no shame in it at all. I have eczema which is so incredibly mild compared to what you’re dealing with. Stress does horrible things to our bodies and I totally understand that the worse you skin gets the more you stress about it, and like the great vicious cycle that it is, the whole thing just gets worse. Not sure what you’ve tried but a friend of mine had good results with UV treatments for a mild case of psoriasis.
    Ashley F recently posted…Home Sweet HomeMy Profile

    • Quirky Chrissy March 13, 2014 at 9:51 am #

      Amen, sister. It’s amazing how differently stress affects our bodies.

      Stress causing my acid reflux to destroy planets inside my body…and I’m already on 5x the normal dosage for acid reflux disease.

    • Joules March 13, 2014 at 8:04 pm #

      Thank you so much Ashley! I’ve heard that UV treatments can help and I actually see a difference when I get sun during the summer months.

      • Ashley F March 14, 2014 at 9:16 am #

        The biggest thing is to NOT STRESS ABOUT IT.

        Hugs.
        Ashley F recently posted…Home Sweet HomeMy Profile

        • Joules March 14, 2014 at 9:24 am #

          Hmm… your use of all caps is stressing me out… 😉

  2. Quirky Chrissy March 13, 2014 at 9:46 am #

    Brian has a less mild form of psoriasis and he always has rough patches. He uses a daily prescription shampoo and a topical cream, as well. I remember when we first started dating and he told me, like he thought he was a leper. And it’s definitely a bigger deal, aesthetically, to him than it is to me. My concern is whether it hurts him, which it doesn’t unless he scratches too much. But you’re definitely not alone, girl!
    Quirky Chrissy recently posted…I Was a BOSSY Little Girl…and I’m OKAY With That.My Profile

    • Joules March 13, 2014 at 8:06 pm #

      I totally understand Brian’s fears when he first told you. I was with a long-term boyfriend when I was diagnosed and I remember thinking that we could never breakup because I would dread having to explain it to someone else and risk scaring them away with my ‘leper’ness.

  3. Jesica March 13, 2014 at 9:48 am #

    Kudos to you for talking about it. The body is an amazing/infuriating thing. I’m in the autoimmune club, too, with rheumatoid arthritis. The best part is that mine is early-onset so people look at me like I have two heads when I mention it. I’m in my early 30’s (for a few more months until I transition to mid), and people say, “That’s an old people thing!” Well, yes, normally it is. Thanks for commenting. 😉

    • Joules March 13, 2014 at 8:07 pm #

      Thank you Jesica! And thank you for sharing about your disease as well. I’ve gotten the “that’s an old people thing” with this too, so I guess we are both mature beyond our years… =)

  4. Christine@DecorumDIYer March 13, 2014 at 9:50 am #

    No need to be ashamed, but I applaud you for breaking your silence. We all have things that we are hyper-sensitive about, each for our own reasons. I had a fourth grade teacher with the same issue. She was one of my favorite teachers and was very open with our school regarding her condition. Thanks to her, I’ve always known what psoriasis is and have never shunned those with it. My cousin is also married to a wonderful person whom also has psoriasis. Unfortunately, not many people know what it is and are often frightened by what they do not understand. Thanks to people like you and my teacher, whom speak out and educate on the issue, it can become common knowledge and lessen fears for those that do not understand. Hugs to you for writing a beautiful post!
    Christine@DecorumDIYer recently posted…O-R-G-A-N-I-Z-E!My Profile

    • Joules March 13, 2014 at 8:08 pm #

      Thank you Christine and what an amazing teacher you must have had. I can’t imagine having the strength that it must have taken to explain it to children again and again.

  5. LeeAnne March 13, 2014 at 10:00 am #

    So proud of you!!! Im sure that was a hard thing to put out here on the interwebs but kudos for being so brave about something that is such a hard topic for you. You really are an amazing woman and the amount of things that you seem to get done in a day is mind-boggling to me. You sharing this info just makes you that much more amazing. Not everyone chooses to take the bad things in life and roll with it while having such a positive attitude and so much fun 🙂 Keep doing what you girl! Your diagnosis is just a tiny little fact about you but all the other pieces add up to so much more!! You rock!

    • Joules March 13, 2014 at 8:10 pm #

      Thank you LeeAnne! You are too sweet. Sometimes it’s hard to stay positive when dealing with something you can’t control, but I’ve finally come to peace that it’s just another part of me… like my bad eyesight or my old navel ring scar. 😉

  6. Katie @ Words For Worms March 13, 2014 at 10:04 am #

    I’m proud of you for putting it out there! I know it’s always made you feel insecure, and we’ve all got a “thing.” This post is like a giant FU to psoriasis, and I think it rules. Autoimmune diseases can suck it!
    Katie @ Words For Worms recently posted…Looking for Me by Beth HoffmanMy Profile

    • Joules March 13, 2014 at 8:10 pm #

      Thank you Katie! Now I need to make a “FU psoriasis” shirt…

  7. Michelle March 13, 2014 at 10:26 am #

    Oh, Joules… I am so sorry that you’ve felt like you couldn’t share what you were going through with your psoriasis and shame on anyone who is so unkind or ignorant that they thought it was OK to make you feel badly. I can’t understand your pain in that respect, but I can tell you that I think you’re amazing– a hard worker, a great writer, an awesome mommy and wife, and someone who is kind, creative and sweet. You’re a beautiful person, on the outside AND the inside, and I am proud that you finally felt you could share your experiences. Hopefully, coming from someone who has an Internet presence, others will benefit from your knowledge. In being brave, you’re helping others.

    Please don’t forget how amazing you are!

    • Joules March 13, 2014 at 8:11 pm #

      Thank you Michelle! You’re such a sweetheart and your comment is one I should print out and put on my mirror for bad days. Hugs!

  8. Gabi March 13, 2014 at 10:31 am #

    Oh Julie – I’m glad you could let go of it. My introduction to psoriasis was in college when I asked a friend who had it on her arms what it was and did it hurt. She gave me a very matter of fact description and educated me. I always thought of her with great admiration and respect and while it isn’t a condition I would wish on anyone because it is an auto immune issue and not fun. I’ve never felt any stigma was attached to it either. My mom has several auto immune illnesses and some of them are very severe. One of them could actually end up killing her. It’s a constant worry. Because “they” the medical community doesn’t know what causes so many of these conditions they don’t know how to really treat it. It’s more a case of managing it and there is no cure. Hugs to you and I’m glad it doesn’t control you. 🙂

    • Joules March 13, 2014 at 8:13 pm #

      Thank you Gabi! Your college friend was lucky to have you and such a strong person to calmly be able to educate people about the disease. Blessings to your mother and her challenges — having a way of managing these types of things is sometimes the best we can hope for.

  9. Lillian from It's a Dome Life March 13, 2014 at 11:21 am #

    I don’t know about you, but when I just put the stuff I feel ashamed of out there the shame (mostly) goes away. There is a freedom in it. I am glad you spoke up. Trying to keep it a secret probably adds to the stress. I have rosacea and most of the time, in this climate, it’s dormant, but when it flares up, my face is bright red. It’s embarrassing too, but I have found ways to manage it. Food often triggers it for me. So do changes in the weather and of course: STRESS. I think controlling stress levels is probably the way to prevent flareups, but that is so much easier to talk about than to do sometimes.
    Lillian from It’s a Dome Life recently posted…Goodbye, Winter – Landscapes Day 10My Profile

    • Joules March 13, 2014 at 8:15 pm #

      Thank you Lily! I do feel a sense of relief to finally have written and published this post. It’s a vicious circle — you try not to stress, but then when you have a flare up you stress about it! =)

  10. Cathy c. March 13, 2014 at 11:31 am #

    Congrats for talking about this! I have a friend who gets pretty bad flare ups on her arms. Sorry you have to deal with this and how frustrating the medical field can’t offer much relief. Thank you for sharing. THe more people are open about stuff like this, the less scary and off putting it can be to people who don’t suffer from it.

    • Joules March 13, 2014 at 8:16 pm #

      Thank you Cathy! It is frustrating that there is no ‘cure’ out there, but luckily after years of trying I’ve found a cocktail that works for me. I hope that your friend finds one that works for her as well!

  11. Jessy March 13, 2014 at 11:45 am #

    “I realize now that psoriasis isn’t a punishment for something I’ve done.”

    It absolutely is not. I am proud of and impressed by you for writing this post. I know it wasn’t easy and I respect your candor. Please know that I don’t think any differently about you because you have psoriasis. I admire your ability to not let this control you. You deserve all the happy.

    • Joules March 13, 2014 at 8:16 pm #

      Thank you Jessy! You deserve all the happy too. HAPPY for EVERYONE! =)

  12. Sara S March 13, 2014 at 1:42 pm #

    I want to give you a HUGE hug for sharing! You’re an incredible person; I’m sure I’m not the only one who comes to this blog to feel like I’m having a (very one sided) conversation with a friend. You’ve opened up your life and revealed a beautiful person inside and out that we all appreciate knowing. Not a single one of us is perfect, we all battle our demons. It’s our imperfections and how we choose to deal with them that truly allows our beauty to shine through. While many people will read this and think that it’s not that big of a deal, we love you no matter what your scalp looks like, I do hope that woman out there who has shame regarding a psoriasis flare up (or even eczema or rosacea) will read this and realize that there’s a light at the end of the tunnel, she’s not ugly, and she’s certainly not alone. Thank you!!!!!

    • Joules March 13, 2014 at 8:18 pm #

      Thank you Sara! When I write these posts, I write them as if I AM talking to my friends… and that’s why I feel like you all have BECOME my friends. So THANK YOU for saying that. And if even one other person can realize that psoriasis isn’t a monster crawling out of her skin, it’s worth it. Totally.

  13. Chuck Kampschoer March 13, 2014 at 7:22 pm #

    Nice post Julie. The one time I thought that my psoriasis might not be such a bad thing was during my draft physical. Apparently that wasn’t stressful enough for a really good outbreak and I got drafted anyway! (Yup I’m THAT old.) I’m proud of you for speaking out.

    • Joules March 13, 2014 at 8:19 pm #

      Thank you Chuck! Are you sure that you and Katie aren’t related to me somewhere down the line… because I swear she’s my sister from another mother. Which makes you one of my dads. =)

      • Chuck Kampschoer March 13, 2014 at 8:52 pm #

        I have 2 biological daughters and at least that many “other daughters.” The back seat can get crowded going out for ice cream but everybody likes ice cream, right? Welcome to the family.

  14. Jillene@inkhappi March 13, 2014 at 7:49 pm #

    Way to go Joules for having the courage to share your feelings and make others aware of what you go through with this disease. I, and many others can tell you there is no need to feel shame or unattractive {which is true} but that doesn’t change how YOU feel and what you have to endure. I hope this post will set you free in a way and bring more peace to you with this condition. You are beautiful!
    Jillene@inkhappi recently posted…St Patricks Day printables and treats to share with others!My Profile

    • Joules March 13, 2014 at 8:20 pm #

      Thank you so much Jillene! You’re such a sweetie for stopping by and taking the time to comment. Hugs!

  15. Ashley Z March 13, 2014 at 9:41 pm #

    Hi, My name is Ashley and I am living with adult acne. *whew* Gross and yucky! That’s how I feel most days when I look in the mirror. Especially during my flare-ups. If I don’t keep up with the dermatologist prescribed creams and pills every 6 months, it takes me just as long to get it under control! I’m 31 years old! 31! I’m not supposed to have acne! I’m not supposed to have skin like a 15 year old! I totally understand the shame and depression part of what you’re going through! Us women (and mothers) have enough going on to make us feel unattractive! Thank you so much for your post. You definitely can manage it and you definitely can deal with it! (and I can too!)

    • Joules March 14, 2014 at 6:29 am #

      Awww Ashley, thanks for sharing! It feels good, right?! Xo

  16. Christyne S March 14, 2014 at 11:24 am #

    This is great, thank you! There is no reason to be ashamed of things we have no control over and you being brave enough to talk about it will help others to understand it,

  17. Kari March 14, 2014 at 3:53 pm #

    Aww friend, big hugs.
    Kari recently posted…The Big One. Dyson ReviewMy Profile

  18. A Pleasant House March 17, 2014 at 1:30 pm #

    I am so proud of you. There is nothing to be ashamed of. You are beautiful no matter whats happening on your head- not in your head- on it. Hahahaa. I wish more women would talk about the conditions that they are uncomfortable with. I, of course, have no such afflictions………..except pathological lying. You’re my new HERO!
    A Pleasant House recently posted…Taking StockMy Profile

  19. Susan June 30, 2014 at 2:02 pm #

    Okay, this is a really late comment (having a bad day after an argument with Hubby this morning and am binge reading your blog to lift spirits), but I have the exact same condition. I actually found that the diagnosis was freeing in a way. It wasn’t that I was doing something bad and that was causing all this terrible flaky skin. My immune system was attacking my body and there was nothing I could do about it. I wasn’t unclean or sloppy because I had flakes cascading down on my shoulders. I now think who cares, it is your problem if you think it is gross. I do have an ubundance of light colored tops though for those times when I am going to be around a bunch of strangers, but that hasn’t kept me from wearing my fabulous navy blazer or wonderful black cowl-neck sweater. And I sleep with a head full of scalp oil and a shower cap every other night to keep flair ups at least not too bad.

    • Joules June 30, 2014 at 2:15 pm #

      Susan – Thank you so much for stopping by and I’m flattered that you’ve been binge reading through my blog. I hope it’s helping with your bad day! As scary as an actual medical diagnosis was, I agree that knowing certainly helped in the long run! I’ve found that rubbing olive oil into my scalp and sleeping with it helps me a lot too!

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