Proud Fakebook Coming Out

Dear all,

I thought to share with you my proud autoimmune coming out post I did today on Facebook. Together with a very pretty picture of myself I posted the below text after I realized withdrawing from my friends and a lot of people not even knowing what was going on in my life. Since I only kept posting Happy Pictures of myself. It was very liberating and I got many positive reactions! Cheers, Martina

(Coming out for PBC post on Facebook)

Sexy "Fakebook" Coming Out!

I got your attention now. Sex sells, huh? Now on to the important stuff: Three years ago I have been diagnosed with a life threatening autoimmune disease, called PBC (Primary Biliary Cholangitis). Living with autoimmune disease really sucks and has changed my life immensely.

I realized that most of you don’t know about this. On Facebook I only post the “pretty pretty” pictures of the better days. Unfortunately, I can change from my happy healthy look into the Elephant Man within 24 hours. Transformers are nothing compared to me! And even when I look happy happy radiant about 70% of the time, most days I really feel like… (insert dirty word here).

Especially after 3pm, any small bit of energy I have that day leaves my body, like I'm a candle lacking oxygen and I get into my 'physically good for nothing' state: couch potato.

I would be more than happy to send you a photo in a private message. Because don’t we all want Facebook to be 'Happy Happy, Joy Joy'?

So probably you, the reader, like many of my friends, don’t realize what is really going on with me and how I get through the days. Let me try to explain:

There are those days that I don’t struggle as much. I have a bit of energy and for a couple of hours I can enjoy the little daily things you normally take for granted, like making a cup of tea or going for a short walk. Then I forget that I have a uncertain future. Those are the days I take a picture of my 'happy not sick' face and put them on Facebook. I direct my energy in my daily struggle towards those positive moments and I am blessed with selective amnesia. On the many days on which I feel bad and can merely crawl, or on which my face gets so itchy and swollen that I cannot show it anywhere, I go in hiding. Those are the days that my legs cramp and won’t walk for me, that I feel constant nausea or that I get all kinds of heavy infections or sores in an organ, on my skin, or in my eyes. Over the last year and a half, I have been in hospitals eight times and have had five biopsies taken, each with an uncertain outcome. The medication I take might prolong my life, but will never take away the symptoms. But I am still here and smiling, showing my Happy Face on Facebook. But the biggest, most debilitating, and to me most annoying symptom is the incredible fatigue. Unmeasurable tiredness. So practically every day, after 3 pm I do not feel well enough for anything. Not for going out, not for meeting friends, not for having a social life. I am happy on those days when I have enough energy to cook. I love cooking. You can see my happy cooking posts together with my Happy Face on Facebook.

It is tough for me to be around people when I have bad days, it costs me energy. People are afraid too, it is scary and confrontational to be around someone who used to be strong but is different now.

So I wanted to let you all know. And I want to deeply thank those friends who understand and, often without words, jumpen in for me. Helped me through hospital visits, cooked chicken soup, listened, advised and listened again. I want to thank you for keeping me company (I need more of that), taking me out, offering me taxi rides or just asking how I am on any day of the week. By whatsapp, sms, email or (yes rare but people still do that!) phone. I have realized Fakebook is not inline with my present life. You have seen pretty pictures of me working, traveling, partying. That is long gone.

Nevertheless, for every door closed there is is another one opened.

5 Replies

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  • Hello,

    I want to say well done for that. Im very slowly telling people, but yes understand the feeling of having two sides, one you show and the other only a few people really see. It takes a lot to process it all doesnt it, especially when youre getting side effects.

    I think that was brave and I hope a lot of your friends rally round and support you in different ways now.

    Have a great Christmas

  • A lovely post, thank you for sharing. I hope you will have friends who continue to be supportive. Happy New Year.

  • That's Brilliant. Mention liver disease and everyone thinks you are an alcoholic and probably deserve what you have. I just say my immune system is attacking my liver and I have a disease you can't stop or cure. but if I say my thyroid not working then I get a different response.( i do have under active thyroid) and at moment not functioning properly.

    Again well done you. Merry Christmas .

  • omg but a good way to describe even if scary, I've only just been diagnosed and Im so petrified :-(

  • Hi there, you have just put my life down in words. Keep your chin up and I just hope you keep strong. Sending you my best wishes, and just keep smiling when you can.

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