What it's like not being normal.

@type1grace on Instagram

What it's like not being normal, and not what it's like being abnormal.


The constant comparisons between you and others, by yourself or by others. 


Today has been a little overwhelming. To say the least. Ever had a day where everything just went south from the moment you opened your eyes? Well, today is one of those days.

Having GAD (generalized anxiety disorder), a day with an emergency doctor’s appointment ordered by my doctor, is very stressful. I kind of anticipated what he was going to tell me. I knew that he will give me good and bad news. I also knew to which extent the "bad news" would be. It's my body I live in, so I know that it's broken. And unfixable to a certain extend.

The day took it's own path. After two hours passed at the doctor's office, I got to my residence where I live. Just taking a break from the stressful day, I took my position on my bed, and watched a YouTube video, just like I do every day. I have to be still, because of clear instructions to not ruin my body any further.

 A friend came walking into the room I share with my roommate, and ask whether I ever do anything but lying down. She asked whether I ever go to class. Whether I even pass my subjects...

I am so tired of having to explain why I cannot do things, and why I do things differently. It feels pointless to explain my struggles to someone. Completely foolish to even try.

I fear for the day I snap. The day I snap at ignorant people is close. It feels like I would literally punch someone and physically hurt them, even if it costs me all my spoons...

What upsets me the most is that the people discussing my health have no idea what they are talking about. Nothing. Whatsoever. That is upsetting.


Being called grumpy, when you are in tremendous pain.
Being called lazy, when you cannot walk down the stairs.
Being called boring, when you have to cancel plans because of your health.
Being called irresponsible, when you take more medication than prescribed.
Being called a hypocrite, when you decide to rather do something fun instead of work.
Being called dishonest, when the "how are you?" question always get a "I'm fine" response.
Being called dramatic, when you actually admit that you are everything but fine.

I guess that's the normal world’s opinion about someone with serious chronical medical conditions.  

I feel like writing them a letter, maybe attempting to explain. They won't get it, I know. But I wish they could remotely understand. My letter would be something like this (maybe slightly less passive aggressive):


"Dear XXX,
I am writing this letter to you to give you a glimpse of what it's like to live in a world where everyone expects of you to be normal. It sounds easy to be nothing but ordinary. Well, I am not ordinary. Very little about me is considered normal. I can type for days telling you how "atypical and different" I am. But what is the point, since your ignorance wouldn't allow you to get a different perspective?

Here I am, with empathy and compassion if someone misses one day of training because of a cold. I care if you tell me your throat hurts. I am concerned about you when your big toe has a blister on. I am willing to take you to the pharmacy or doctor and stand in a queue for you.

But because you cannot see my pain, illness or struggles, they're not there? Right? Wrong.


Allow me to use Christine Miserandino's example of life with a chronic illness. Imagine having to choose what to devote your energy to. Everything you do, will cost you something. Some things are more expensive than others. Others are free of charge, and might even gain you more energy for a task that might occur later.

Well, that is just how it is. Please check out Christine's blog about her Spoon Theory. Maybe that explains a little more to you.

I would like you to respond to these questions:

How does it feel living in a body that tries to kill you, 24/7?
How does it feel to manually maintain a big part of your homeostasis?
How does it feel living in fear? Fear of dying and fear of surviving?
How does it feel to receive bad news about your health every day with electronics keeping you alive?
How does it feel having so much pain and insomnia that sleeping requires a high dosage of sleeping medication?
How does it feel to have a fear for a phone call from your doctor, just because they don't call with good news, only bad?
How does it feel cancelling appointments and adventures because your body does not allow you?
How does it feel to constantly wearing a mask and saying "I'm fine" to every comment?
How does it feel being so abnormal in a world that expects you to be normal?
How does it feel?

Do you know how it feels?
You don't. You have no idea. Unless you are a fellow Spoonie and living with something that tries to kill you, you don't know. Thus, your opinion about my health, is irrelevant and insignificant.

But then, why does it still bother me? Why do I feel compelled to devote an entire blog to something that is irrelevant to me? It bothers me because you still have the audacity and impertinence to still make remarks about how I live my life in this normal world.

Then you might wonder why I do fun things if I cannot even do the "important" things. Why do I have a drink with friends but not attend a two-hour lecture? Valid question. I used to beat myself up about this. I used to say, "no pain, no gain" and "first work, then play". But, I have come to the horrific realisation that my life is not normal. (It took me years to admit.)
I decided to devote more energy to the things that make me live.
The things I would not be able to do if I waste my time and energy on something that I can do later, when I have energy to spare. Yes, I know that I would be happy once I have my degree, once I have a job someday. But what about the meanwhile? Should I assign all my remaining energy and time to something that drains me faster than I can restore it? What would you do?

What would you do if you knew when your clock will run out of time?

So, we don't know when that would be. It might be tomorrow on your way to the store or it might be in 40 years when you are retired. We don't know. Life for a person with a chronic illness is a little more fragile than for normal people. Sometimes our clock ticks faster, and other times, we have grace and our clock gains time.

I have decided to grant myself time to live. Time to flourish in my "not normal" life. Time to prioritize. Not to satisfy you or the world.
I will do what is best for my body and soul.
If that means not putting my body under more stress, then that's what it will be. If it means to skip a class and write a sick test, then that's what it will be. If that means missing a birthday party to sleep, then that's what will be.

 I don't want your pity. I don't want to be felt sorry for. We all have a cross that we have to carry, one way or another.

So, on a kinder note: leave your ignorant and arrogant comments to yourself. You won't survive a day in my body. And you don't have to. Don't complicate things for me. I'm fighting battles you know nothing about.

Kind regards,
from a broken body with a big heart and a pancreas on the hip.

Feel free to read this news article about how I live happily on #internationaldayofhappiness

 https://www.ofm.co.za/article/local-news/233819/inspiring-an%C3%A9-gives-others-hope

The motto of the blog:

  • If you are someone with a chronic illness, don't try to be normal. It is impossible for us to maintain the "normal image" in such extraordinary circumstances. Why pretend to be only a rock when you are a diamond?
  • If you love someone with a chronic illness, don't mock a pain you have never endured.

Spread the love and awareness for your "not normal" life.

xxx
Type 1 Grace
Ané


Link to The Spoon Theory:

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