Pericordial Blues

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#15-IT IS NOT ALL IN MY HEAD

Celtic Circle

Hey everyone!

I don’t know about you, but I get again and again the same reaction from doctors, friends, family, … People who insinuate (or worse, telling me!) that it is all in my head. It’s anxiety.

I had that discussion again last week. I was told that the human body is made to heal by himself within weeks, that I don’t need all the supplements, that it’s all a placebo effect, that even an animal going to the vet will get better thanks to all the attention he is receiving from his owner and the vet (Does this mean that I am an attention seeker?! What do you think?).

Of course, I objected that a chronic illness such as mine is a rare condition and that the “experts” don’t even have the budget to make research in order to find an adequate treatment.

I was told that I was giving a defensive response and that “this someone” might set back and stop talking to me and quit our relationship. I was shocked because “this someone” is a member of my family who truly loves me. 

Of course, I also care about loved ones struggling to admit and overcome the vision of my decline. 

“This someone” argued that I was expecting people to ask how I am. But people know that I am ill and don’t bother asking how I am doing. The conclusion was “Stay alone, we are all alone. Don’t talk about your disease!”. 

So what?! I have to admit this craziness and face hell alone?

Is this ableism? What is ableism exactly?

As all of us, I took my life and my health for granted.

As all of us who paid for insurance or social security, I firmly believed in the medical goodness, sure that they will research my case days and nights. Such an interesting and rare disease! Was I WRONG! 100 %! 

Taking care of my discharged and painful body is a full-time job. It’s not fun at all. Does it look like holidays? It’s not!

But you can’t imagine before you have to deal with a chronic illness. So please, acknowledge that you have not experienced my condition (you are so lucky, buddy!) and you don’t know my medical records (it’s a brick and it costs me pain, tears and MONEY! Sooo much money!).

I spent my before-life thinking and making plans about my future. What will I do next? Job, hobby, love, kids, house, … So many dreams! As soon as the chronic illness nightmare started, the only “future” (or goal) was to heal.

I am not a burden. I am not a failure. It can happen to anybody.

Don’t take health for granted.

Don’t take my chronic illness for a lie.

Constant denials and misunderstandings are what make me anxious about my future. Where is the support? Where is love?

Who is the liar when you say or show “I don’t care!”, “I am not asking how you are doing”, “I don’t worry about you”, “You are an adult, you can take care of yourself alone”, or “It’s all in your head”?

I know that a majority of people living with a chronic illness are walking on the same path. What can we do? Can we gather together and make things change? Union is strength. I need you.

Tell me what is in your head when you say “It’s all in your head”?

Most of the time when asking a question, the answer is already inside the question. Why don’t we ask a psy what is ableism and why people (only human!) keep harassing and bullying and gaslighting sick people because they are not able to face them with dignity?

What is ableism?

Taking health and life for granted?

Being uncomfortable facing illness?

A lack of education on how to act with someone with chronic illness or disability?

Is ableism an injunction? Get well soon! Show me the good side! Don’t bother me with your illness! Always look at the bright side of life! (for those who remember the Monty Python’s absurd song).

Is ableism the trio “I don’t want to see or hear or speak”?

Asking for help requires so much courage because it’s a place of vulnerability. Never forget it! So always be kind!

My disability doesn’t meet your expectation? But at the end of the day, all I need is 2 affirmations and 1 question:

I love you!

I believe you!

How can I help you?

Could these 3 simple sentences fight ableism?

Guys, it is a lot of questions. I don’t have the answers. I am in the middle of the dark battlefield of illness, and all I know so far is that I didn’t build these walls and something must change.

LET THE WALL CRACKS, ‘CAUSE IT LETS THE LIGHT IN…

THEY CAN’T TELL YOU TO CHANGE WHO YOU ARE (P!NK, All I Know So Far).

Pericordially yours,

Vali