Autoimmune Disorders And Fashion (Part One: The Beginnings)

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Harsh title? Match made the below Heaven quarters? Perhaps. What if – yes, I’m asking you – what if living a fashionable life while being diagnosed with an autoimmune disorder would be possible? Would you be interested in making this match a success?

Fashion and autoimmune disorders is so possible! I’m living proof – and I want to share that with you! I want us to come together and discuss, unload that heavy load off our chest, breathe out the heavy stuff and breathe in the wonderful stuff! Let’s dress ourselves with love! I know it’s hard! I’m fighting every day! And the fight will never end, I know! But we’re not alone and we can make it better, together we’re stronger, better!

fashion autoimmune disorders

My dear friends (old and new)! I’ve thought long and hard about this. Not about how to break the news to you, per se, but how I should manage the news, how I should dress it, pamper it and make it more ‘appealing’. As if… Some of you already know me and my recluse ways. -_^

I’ve been first diagnosed with an autoimmune disease when I was 14. Something easy and quite mild – vitiligo. For those unfamiliar with vitiligo – it affects the pigment producing cells of the skin. Basically you’re whitening out. So I’ve grown into a Dalmatian since I was a teenager (you can see my white patches around the eyes). It was ok, though. There was no pain, absolutely no other symptoms except the white patches. On my face, on my hands, on my legs… I cannot begin to tell you what that does in a teenager’s head, though – I was agonizing and dramatizing one day, happily bouncing up and down the other.

Don’t let the media use your insecurities to stop you from finding your style! You’re better and stronger than they want you to believe!

Different treatment methods were proposed to me and I think I’ve tried one too many. In 10 years I was so fed up with solar protection lotions and hats, ointments and experimental medication I’ve put a stop to it all and decided to live my life as it was. Four incredible children later (and 10 more years), some weird rashes appeared. First on my face, my hands, my torso, soon all my body was itching and I was a nervous wreck. That was 2 years ago.

Coincidentally, Stylefrizz had begun to slow down. My focus started shifting, gravitating more towards my personal life. Blood tests shown nothing wrong, nobody knew what to recommend to make me better. The rashes came back regardless of the medication.

I though it was the food. I thought it was my nail polish. I thought it was the air I was breathing. Everything and anything. Then I started taking out possible allergens from my food. Gluten was first.

And my rashes went away. More than one year everything was fine. My focus was slowly recovering and I started a new project (some of you are already familiar with it – Seasonails); although I was really dragging through the day, very tired and slow, nervous and desperately seeking answers. Then the rashes came back. Dry eyes, dry mouth followed, my knees felt awkwardly painful and some weird eczema appeared on my skin.
I went to the doctor, again. Performed all sorts of allergic tests to no avail. Until one amazing lady doctor recommended a certain test for my thyroid. It came back positive. More tests ensued. Halfway through the tests and doctors appointments (I have appointments through the following two months), I finally found peace.

Have you tried oversized clothing? It really changed my life!

After two and a half years. Peace. Yes, I still have itchy patches. Yes my eyes are dry and so is my mouth, even my nose is dry too. Sometimes my eyes hurt so much because of the dryness, I can’t keep them open and burst into tears just to feel some moisture. My knees still hurt and I have days I feel so tired, I would just sleep all day. I have days when my social anxiety is as such high levels, I can’t talk over the phone, let alone see people! I have days when my brain is so foggy, I feel like a walking disaster (I crashed the car while having one of those days).
After two and a half years I’m at peace with my body because I finally know I’m not crazy, I’m not making things up and I’m not bringing this upon myself with my negative thinking. My Doctor told me it could take years before I get diagnosed, but it looks like the early stages of Sjogren’s Syndrome.

It’s my turn to fight back! I’m fighting back with love and understanding. I understand my body and what it’s going through. I love my body and I want it to get better. I will definitely treat my body well, like a friend in need, not an enemy. I’ve been doing this wrong for so many years!
So I’m seeking friends. Friends who go through autoimmune disorders and yet manage to lead a fashionable, active existence. Let’s all come together, share and discuss our feelings. This is just my ‘intro’ in the matter. Tomorrow and furthermore (hopefully I won’t go brain foggy too soon again) I’ll tell you how my autoimmune diseases changed the way I dress, the way I style my hair, the makeup I use, the food I eat and my daily routine.

Please, feel free to contribute with your own experiences! I’m sharing mine, I’m not pretending to be an expert, just coming out with what I’ve learned going through my life as a woman, wife and mother with autoimmune disorders. I’m really thankful I have you to listen and share my thoughts and feelings and from now on, my daily struggles. Yes! I’m living with autoimmune diseases and I’m determined to make it a fabulous living! Will you join me?

3 comments

#1 Theodora on 04.12.16 at 4:00 pm

Oh girl, I have tears in my eyes. How sad …
On one hand I am deeply deeply sorry this has happened to you ( Why do bad things happen to good people ? and all those unanswerable , pointless questions which come to mind in these situations… ). On the other hand I see how positive you are and it makes me “glad” you are ALREADY facing it with such aplomb, because this is the only way : STAYING POSITIVE ! a positive actitude does have influence on the body ( the mind /body connection) and then comes the shift to ” now that this has happened what shall I do about it ?” and how to benefit the most of it ?
You may think “oh it is easy to talk “… But believe me, I walk this walk every single day, for 12 years now. In 2004 I was diagnosed with Sezary’s Syndrome. I felt guilty ( I am jewish…), I felt disgusted, I felt isolated, helpless, I had nervous breakdowns, I think I went all those stages of disbelief /self sorrow/powerlessnes/ self hatred / stuck in the limbo / final acceptance. Only when I reached acceptance I started to manage to stay in a balanced and productive life.
Please understand that I am not trying to compare our sufferings. That would be absurd, there is no level of comparison , Each human being is unique with its unique story and I am a firm believer that we must learn from what was imposed to us.
You are brave, very corageous to open yourself here. From the bottom of my heart I wish you get all the help you need, be it medical information, be it psychological assistance or just a virtual friend on who you can openly talk about your feelings. You have my email address. Don’t hesitate to contact me for whatever you need. By the way, hubby is a physician. If you need orientation , although I am sure you are on the hands of excellent professionals, he will be pleased to offer it.

#2 AJ on 04.12.16 at 9:02 pm

You just rocked my world! I was recently diagnosed with Sjorgens and I adore fashion! I can’t wait to read part 2. Please continue sharing.

#3 kpriss on 04.13.16 at 8:00 am

Theodora and AJ! Thank you! For your words and especially for your support! Reacting to my story was everything I needed to keep me going! To know I’m not alone! That we’re not alone! TOgether we’ll find the strength to make this autoimmune disorder ruled life a beautiful, fashionable one!

Oh! Theodora, you! Such an amazing woman and you have to go through all this? No, I won’t compare, I just .. from what I read about your condition, I can only imagine what you must’ve felt! Yes, like you said – ‘glad’ that you reached that balance, that acceptance! I honestly feel that it’s the key to it all : accepting and living with the present. Not the ‘healthy’ past, not the ‘possibly worsening’ future, living every day and enjoying it like it is. Thank you for all the support you’re offering, it’s unspeakably beautiful!

AJ – keep close, I’ll be definitely sharing more and more! :* do share your troubles whenever you feel like it!

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