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PUT YOUR BEARD IN MY MOUTH

Janaina Medeiros
we're not kids anymore.
Sweet Seals For You, Always
noise dept.

#extradirty

Kiana Khansmith
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@medoesexist-blog
When I got sick 6-7 years ago, I spent a lot of time doing research and trying to spread awareness about it all. I assumed my family and closest friends would want to know, plus it came along with the stages of grief, and explaining helped me process things. At the time I didnât like being a sudden âflakeâ and people were very quick to think I was faking. I started a blog and I was very naive about the whole experience. At the beginning I still believed in doctors and I still thought I was surrounded by a great bunch of people.
Sickness quickly weeds out the true from the false. Instead of support I was judged on a daily basis. I was given the typical advice, usually unsolicited (which has not stopped in the slightest)⊠Everyone just so very sure they could fix me.
The grieving process is a rough wilderness and no one can ever tell you how to get through. You just do. You wake up every day and you feel how you feel and you fight through it. Sometimes depression holds you hostage for a long while, sometimes itâs anger, sometimes itâs acceptance, sometimes denial, and so on. Guilt was a major player in those days and still can be when pressed hard enough during long stretches of flares. Personally Iâve always felt that flare is a horrible description since having a chronic illness is one perpetual flare. Honestly. Because who are we kidding? Even on the best day with fibromyalgia, we still feel like a trip to the ER is in order. We just learn to live that way.
Iâm finally at a point where I feel like I donât want to explain anymore. It sounds so simple, but anyone who has traveled this path of sickness knows itâs not. Not at all.
Because people push and pressure. They judge. They expect you to be the old you. They expect you to be there for them but they are nowhere to be found when you need encouragement. Not everyone, of course, but a vast majority.
It takes time. Learning boundaries. Saying no. Choosing rest over people pleasing. Recognizing manipulation.
And people seem to think itâs a competition. If they ask how I am and I say Iâve been having migraines every day, they absolutely must launch into their own tale about a headache. Iâm not talking about other people who deal with stuff chronically⊠But the normals who think itâs cool somehow to parade their ailments and get some twisted sort of street cred they havenât earned.
It sounds harsh, but itâs the truth.
Itâs not cute or cool to be ill. Iâm so over people thinking thatâs a way to get attention. Itâs not. Having illnesses all day every day is a hard ass job. Itâs not a headache, a tummy ache, a bad day. Itâs a lifestyle of constantly feeling horrid and making the very best out of the circumstances. Itâs wading through all of the emotions, and sometimes almost drowning in them. Itâs learning how to survive in complete brokenness of body and spirit. It takes work. Literal blood, sweat and tears.
Thatâs why I wonât do it anymore. Iâve stopped sharing unless I absolutely have to with real world people. Not in shame or fear or any other reason except that I donât want to invite any unwanted criticism or suggestions into my spirit. I donât want to be asked how I am and then basically be ignored so someone can talk to me for three hours about their one day cold or headache.
No thank you.
I explain to those closest to me. They deserve to know. They care enough to be privy to the real nitty gritty of chronic illness. But for everyone else, this reforming people pleaser is done.
I love people. I do. Iâm just not willing to compromise my mental energy and my physical well-being anymore.
So I wonât be answering texts from unsavories. Those one-sided relationships that demand so much time and energy. Selfish people who call me their best friend but donât answer my texts when I need a friend. I wonât be seeking people out. Iâve spent my whole life being everyoneâs confidante and best friend and Iâve gotten shafted back.
From now on, I choose me. I choose those closest to me. I choose wellness over getting caught up in the stresses of others.
If itâs a legit emergency, Iâm there. But if itâs for someone to diagnose me when Iâve already been diagnosed, or to bemoan to me for the 800th time about a situation they donât ever make steps to change⊠Well, Iâm done. I donât have sympathy anymore.
Connecting with other spoonies is the best. Thereâs no competition and thereâs a built in understanding that cannot be manufactured. These are the people I want in my world. These warriors. These lovelies that are in the battle with me and who encourage me by their strength and tenacity.
This has been years in coming and I know old habits keep trying to sneak back in, but I am sincerely over it. I donât want to waste my breath on people who donât hear me anyway. People who think I can slam down a pain pill and be right as rain⊠That I can be the version of me that suits them best.
So Iâve been keeping things to myself. All of the people in my life who think sickness is cool, who copy my social media posts, and those who donât really care to know about fibro⊠But expect me to listen to them over and over⊠Iâm breaking up with each and every one of you.
đđœ
Doctor: Exercise and you will have more energy.Â
Me: I am so happy you have cured Chronic Fatigue Syndrome, let me call the scientists and tell them to stop researching.Â
This is kind of a horrible thought/thing to say. I've heard it before and it resonated with me. Some people with this illness would rather have cancer.
A lot of types of cancer have a good chance of getting cured. CFS has no cure. All doctors will take you seriously with cancer, and you'll be prioritized. A lot of doctors don't even know what CFS is or how to diagnose it. A lot more doctors will not take you seriously if you do have it, and they won't be bothered to help you. I've had doctors (and nurses) look at me with fake sympathy and say "yeah it's not very nice being tired is it?" "My niece had it and she recovered, so you'll be fine I promise." You wouldn't say that to a cancer patient.
At least with cancer you can tell people what you have without having immediately follow it up with "it's worse than it sounds". Because when people hear "chronic fatigue syndrome" they automatically think "oh so you just get tired often?". But if someone hears you have cancer they understand that it's serious and possibly very debilitating.
I'm not saying I want cancer. I don't want CFS either. I'm just saying that some days, I'd rather have cancer than CFS. I never thought I'd say that. But that's how bad things have gotten.
Literally.
Source: Facebook
Literally.
Source: Facebook
A friend shared this and it hit pretty hard. Â This is what living with an invisible illness feels like to me.
The Borrower by Rebecca Makkai
Dear Spoonies
It is okay to whine. It is okay to acknowledge that your situation sucks and that itâs unfair. It is okay to throw yourself a pity party. It is okay to be pissed off about the things you go through. You donât have to grin and bear it. You donât have to suffer in silence. You have a right to talk about your struggles and no one has a right to shame you for that. Do what you need to do to get through the day/flare/episode/life. Your pain is legitimate and you are under no obligation to hide it.
Many of us do these things and don't even realize the implications.
Okay, on the one hand, yay for exposure! Then again, itâs just the tip of an ableist iceberg. Oh, and stellar job choosing images that really show the diversity of people with disabilities. Next time I get told âBut you donât look sick!â, Iâll know who to thank.
âAutomatically helping us without asking first should never be done,â Tiffiny Carlson said in a 2013 Huffington Postarticle. âWe know when to ask for help. Just wait for us to speak up.â
One of the risks of being quiet is that the other people can fill your silence with their own interpretation: Youâre bored. Youâre depressed. Youâre shy. Youâre stuck up. Youâre judgemental. When others canât read us, they write their own storyânot always one we choose or thatâs true to who we are.
Sophia Demblingâs The Introvertâs Way (via shunyu)
You were a chapter I never meant to write.
Strangers With Memories - Blitz Kids (via beyourselfandstaytrue)
I am not okay, but not okay is how Iâve learned to live.
(via bl-ossomed)