The Fear of Being Judged and How Can That Mess With Your Online Content

So I’ve been blogging for quite some time now and my inner perfectionist hasn’t been pleased with the results. Each week, I almost forced myself to find new and relevant subjects to write about, making myself forget why I even started SMart Choice in the first place. That alone can get one feel frustration, anxiety and lack of accomplishments.

And then it dawned on me! I was doing it all wrong! A personal blog shouldn’t be built upon what others expect you to write or on what topics you think people might be interested in! Of course you want to put out your best content and make people either feel better about themselves or help their day in one way or another. Of course you want to put out informative and entertaining content that they ask for and/or need at some point.

The part that almost got out of hand is that where I ended up with general subject posts, when all that I wanted to do in the first place is to write from my own point of view, and thus be able to share my story with like-minded people who might be facing the same situations.

But the mind is equally powerful in two ways: it can make or it can brake your ideas. I’ve written before about why I started a platform talking about my MS story and related topics, but the core-reason slipped away.

I remember how alone I used to feel after receiving my diagnosis and all the frustration towards not knowing no one my age that dealed with the same issues. I searched high and low on the internet, stayed away from all the “classic” horror stories one might find and decided to have a place where I can shine a light over this disease and offer a kind word to anyone who might be in the same situation I was.

I had so many things to say, so many stories to share and so much love and encouragement to give, that I focused to much on doing things by the book and ended up leaving myself somewhere along the road, silenced by my own blog. Imagine that! The irony!

I created a fixed structure that aimed to inform, give health tips and lifestyle articles on a weekly basis, touching some of the “hot topics” in the life of an MSer. Things like fatigue, work and changes have been recurrent topics on SMart Choice, and each generated a fair amount of engagement on Twitter and Instagram.

But where did I fit in? I gasped for air as I searched for the authenticity in the story I wanted to tell. I have been totally honest in all of my articles, but something was missing. That something that sparked in an article here and there and then went off in silence.

We all have the fear of being judged and being labeled, even much so when you have a chronic illness that not many people know about. But now I know better! I thought about all the lovely and brave people I’ve got to know over the last year, and that gave me back the courage to speak my own voice. So many MSers out there came into their own and I feel like it’s time for me to do that too.

After all, I am not defined by my illness, but by my power to live life to the fullest, by the things that I am good at and by the kindness I am so wanting to put out in the world. Long story short, I want to rebuild SMart Choice Lifestyle and shape it around the life and the stories I can give to the world. Make it about the point of view that I can add to so many others that are online.

Expect books, short story writing, visual storytelling, yoga, psychology, brain health and more. All that lived on top of what we MSers call “the snowflake disease”, and that others might know as multiple sclerosis.

It feels so good to take that out of my chest! Especially after the massive anxiety attack I had last night. It came out of nowhere and lifted all my senses into flaming fear. But that’s a whole other article. Soon to come!

Sorry if for some of you it might sound a little overdramatic, that’s how my writing tends to be. It’s missing all the voice, gestures and tonallity that you would have when hearing me talk about the same stuff in real life. Curious about any aspect I talk about? Just ask and I’ll be happy to give you an answer as soon as I can.

Lots of love,

Alexandra

MetamorphosiS. An MS story and all in between - ep. 3 - And so it begins...

What do you do when you’re facing danger from within? You don’t know the cause, but you’re feeling anxious, scared even. You feel that things are not in the way they’re supposed to be and that is more to it than you thought. Going in to have a treatment that will finally make you feel better should be comforting, right? At least a bit, right? Not if you fear needles and the doctor tells you that you have to face them for three or five days in a row. And not just a pinch, an i.v. An i.v. with a drug that you know has side effects that will expose your body to reduced immune function and predispose it to infections, amongst other issues.

Telling your loved ones

My dad took the news rather well. He sounded so calm on the telephone! I didn’t expect him to be so straightforward about it. Maybe I should just get the treatment done and then get on with life. Yes, that’s the way to do it. Or maybe it isn’t?! I’m confused. If I don’t go to the hospital to get those i.v’s, my vision will get worse. The neurologist said so “You only have two eyes. It’s your decision!”. I want to keep my eyesight. I do. But needles? Five days in hospital? The last i.v. I ever had was more than 20 years ago. Dreaded needles! I hate needles! Is it really necessary to go through this? I’ll do some googling when I get home.

The air is so hot today. Taxis are always such a furnace to travel in. But I rather go through this than being stuck in a crowded bus or metro. I can let my mind wonder without paying attention. And be scared once again. Calm down, Alexandra! Calm down! I’ll have this treatment done and then it’s over.

Right here is fine! Thank you, sir. How much is the ride? Here you go! Have a good day! Home at last! I’m safe… and sound! Maybe not so sound. Let’s see. Not so good, but we see.

Optic ne-u-ri-tis. There it is! Only 25% of the total cases turn out to have multiple sclerosis. I don’t have to have multiple sclerosis. It’s only an issue with my eyes. I want another opinion from my ophthalmologist though. We’ll see what she has to say and if I have to get that treatment done, I will. But part of me wants to get it done! Arghhh! Where’s that ashtray? Of course! It’s in the kitchen, where I left it! The smoke rises so fast. It’s such a beautiful day today! Damn it. I can’t even smoke this cigarette. What’s wrong with me?

Five hours later and the same thought goes on and on. Scary thought, crazy thought. Is there something really wrong going on? I like my life the way it is now. There’s the door opening. Dimi finally got home. I want a hug. A fat, big hug! “Hey, I missed you!”, “Missed you to! Hey! What a hug! Is everything alright? What did they tell you?”. I need air “I need five days of hospitalization.”

Coming to terms

I feel scared because I don’t know the source of the danger that makes me stress. I am facing the unknown, and as with all moments in life that we are dealing with a situation that we are not familiar with, we get anxious. I get anxious. I look for solutions, I try to get back to my comfort zone.

I don’t really need that treatment, do I? The eye problem will resolve itself like many others did in the past. I can trick my body into getting over this one to. Or maybe this time I can’t? The doctor said that I must do this if I don’t want any major problems. I need my eyes, I want my eyes back. Both of them. They all encourage me to do this. To get better and do this for myself. They want me to be well, to get it done and then resume life.

Finally I agree and start preparing for five days away from home. It’s only a small amount of time to lose as I get my sight to normal. It will be over in less than a week. There is no way around it. I have to go through this. I’m brave enough. I know I am.

Dimi is going to be by my side every day. He promised that. I know he means it. I love him so very much for that! Mum prepares snacks and water. Dad looks for a cab, and off we go to the hospital!

First night at the hospital

Such a quiet place! Such an alien place to be in. It’s like we’re on field trip. Like we’re visiting something. I’m safe. I’m with the people I love and who love me back.

This is a quiet E.R. to be in! That’s funny! Oh, wait! There’s an ambulance rushing in. My mistake! It’s not quiet, it’s quietER. Get it? QuietE.R…. Nevermind!

We now have to wait our turn to see the shift doctor. Ok, I’ll go get a coke from the vending machine. Mum is so anxious. Dad is quiet… Dimi is … Dimi is focused and making me laugh.

It’s our turn. I’ll go in alone. I want it that way. Nice doctors here. They treat you right. God! I’m checking in to get emergency treatment done, and all I can think is how nice the E.R. doctors are! That’s good! My moral is up. Up and away! Away to the hospital room that will house me for the following days.

Mum and dad stay a bit behind, Dimi comes with me and the assigned nurse. As I walk up the stairs I know that I am out of my comfort zone now! Way out! Breathe, don’t forget to breathe!

The room’s nice, airy and quiet. All here is so quiet. It’s a common room, and all of my roommates are old enough to be my mum or my grandma. That’s ok! I get along well with people. I’ve always known how to connect with them. I’m almost shy now, but I’ll get used to it. The things one has to get used to!

First blood tests. Here comes my best friend, the needle. Look away and breathe!

Mum comes in and tells me that dad went to the pharmacy to buy the treatment for the following days. He’ll be back soon. Oh, there he is! He’s smiling and telling me everything will be alright. I smile back but I’m scared. There’s this gut feeling again! Something’s wrong, dunno what, but it is!

Mum makes sure everything is in place and that I have all that I need. I tell her I’m fine. They say goodbye for the day. I can see mum almost crying. Dimi stays for a while longer. We go out on the hallway. He hugs me so tight that I can’t breathe for a moment. We kiss and I know that I am not alone in this. I know there’s a bond. We stay in the hug just a little bit longer. We make plans for the following day. He’ll be back here at 8 a.m. sharp! Yay! The hospital guard comes to tell us that is 8 p.m. and all visitors must leave. Dimi is leaving.

I turn my back to the stairs and go back to my bed to get changed. They said the treatment will begin in an hour. I go to the bathroom and put on my tights and a grey t-shirt. I’m comfortable. I feel safe. But I am alone. That’s allright! I’m a big girl! I can do this!

My roommates are actually ok. I was afraid that I would feel awkward. But they’re friendly and we share stories. I needed to talk. I needed to vent. They somehow feel the need to protect me. I’m the youngest one there. The’re all above 40 and I’m only 28. They all say that I’m going to be fine! “Such a young girl! You’ll finish treatment and it will all be over, dear!”.

Treatment is here, by the way. A nurse brought it in. She explains the proceedure and shows me the i.v., and then asks for my hand. I gasp for air. The needle gets in, and I can feel the medicine beginning to flow. I’m told to lie down in a comfortable position. The nurse is going to ckeck on me once in a while, to see if the i.v. is done.

Remember the nice E.R. doctor? He comes in and asks if everybody is ok. He particulary comes near me and asks if my mum was alright in the end. They talked and she cried. She got scared for me. “I told her that if you have optic neuritis, there are chances that it might be MS. But that’s not a rule. We’ll see. Are you alright with the i.v.?”.

My soul dropped. After the doctor left I called my parents. I asked them if they are alright. I once more heard the reassuring voice of my dad, who told me not to worry to much, because we got this and we’re gonna put up to it no matter what. To be strong and have a good night’s rest. We’ll see each other tomorrow.

Every journey begins with a small step

It’s now lights-out in the E.R. ward. I can’t sleep. I keep thinking of what has happened, and turn it inside-out. Of one thing I am certain: my sight is already getting better, treatment works. I learn to be patient and brave. I can do this! Day one is almost over. It’s 4 a.m. and the first i.v. is done. I turn on my side and slowly fade into sleep.

And so it begins...

(go back to Ep. 2 - Breathe, just breathe!)

P.S. Question: How did your MS story begin? Share your answer on Facebook, Twitter or in a comment below. I'd love to hear from you!

Sincerely,
Alexandra