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#chronically sick

Hello lovely humans,

Sorry for the distance between posts as of late. Things have been a bit more than a bit difficult lately. As strange as this feels to be posting on a blog I have created with the intention to help others, I am struggling with my situation and am looking for outside perspectives. The following contains discussion of heath worries and physical illness, if that is triggering feel free to skip the post. Take care of yourselves.

So I am sick. I have been sick for quite a freaking long time but due to financial issues, abusive living situations and years of medical neglect none of my many struggles have been addressed. I have had extreme struggles with allergies (hives, food reactions and even anaphylatic responses that change and are highly unpredictable), struggles with immune function, as well as grueling and debilitating joint pain among other things. Through most of my life this was dismissed as me being ‘attention seeking’ or ‘crazy’ and eventually I learned it was safer to not say anything at all. I was a star student, dancer, active , and energetic. Bu that didn’t change anything, in fact it just made things worse.

I can’t hide the fact that I am sick any longer. My illness is chronic and is stopping me from continuing with my life as I want it. I look sick, I am loosing weight despite eating as much as I can (stomach issues and nausea complicate things) but am staying in recovery for my anorexia. Pain is bad, I struggle with stairs and exersize of any kind which is hard for working as a cleaner. I am tired all the time and can’t sleep. In short, this is grueling, and I am unbelievably scared. 

I am seeing a doctor, and getting referred to specialist after specialist, but I am struggling and afraid. I cant tell my parents they are toxic at the best of times, and my doctor won’t say more than ‘do this as soon as possible’, ‘your results are abnormal’ and ‘I’m not sure what’s going on’. She has dropped the idea of feeding tubes, gastric scoping and tests that even as a pre med student I am terrified about. I dont expect anyone to have answers or tell me whats wrong, I just thought it could be cathartic to address and useful to ask for any advice or experience an of you amazing humans have on or around this topic. 

If there is anyone with advice, answers, support or wisdom of any kind, please reach out, anythings welcome right now. To be perfectly honest what I need more than anything is a friend. 

I hope you all are doing well, I send good vibes and support as always and am trying to keep my blog active. I am so sorry for being so  distant when positivity is so important now. Stay safe and know that you aren’t alone

Jules

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Abled ppl keep saying were so depressed with our condition but ya’ll are the ones treating everything we do like its a tradgedy.


Disabled person: I got a diagnosis!!

Disabled ppl: YAS! Congratz!

Abled: :( i’m so sorry


Disabled: i saved up enough for a mobility aid!

Disabled ppl: omg!! :D

Abled: now you’re limited :((

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Did that happen, or was it a dream?

Oh God, this pill is going to kill me

I went to go swallow, but instead, in I breathed

What I thought was a pincushion was really my knee

Don’t be offended if I forget your name,

I can barely remember my own, for Christ’s sake

-A.M.

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Things no one tells you about being sick #1

Your immune system just stops working. Especially if you have an autoimmune disease, you catch literally everything that’s going.

You’re more likely to have a cold than not. I’ve had a cold for almost two weeks now and the whole time I’ve been too exhausted to actually do anything productive, like study or work.

You’re sick not only with your illness but with chronic colds, flus, etc as well.

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I finally talked to my family about using my wheelchair whenever I’m out of the house even when it isn’t absolutely necessary!! And they are all fine with it and completely support me!!

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People: You’re so skinny! You should eat

more!

Me: I’m eating enough. I’m skinny

because I have IBS.

People: Man. I wish I had IBS, too.

You’re so lucky you can’t gain

weight!

Me: ….

No you don’t.

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YES IM JELOUS OF ALL Y'ALL MOTHER FUCKERS COMPLAINING ABOUT HAVING TO WORK 12 HOURS STRAIGHT TO BE ABLE TO EFFORD THAT TRIP TO ITALY I WANT TO BE ABLE TO GET OUT OF THE HOUSE FOR MORE THEN 4 HOURS WITHOUT DYING OK????

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It’s been like 80000 years - so sup fuckers. How we all doing? We all still chill? We all in the middle of dumpster fires? Either way I’m very much in a dumpster fire but hey I’ve grown to like the heat. So that’s cool that’s cool 😩😂

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So I know that being disabled isn’t a bad thing and it’s not something to be pitied but yknow sometimes I’m fucking angry.

Fuck, I used to do so much. I was really sporty. I was a fantastic swimmer, amazing at ballet, a beast at gymnastics, brilliant at cross country. I loved to run and run and dance and ice skate. I would walk for miles just for the sheer fun of it.

Now I can barely walk down the street. I’m so fucking angry and I’m grieving. My whole life was set out in front of me and now I can barely make it out of bed. There’s days where I just stay in bed and feel sorry for myself. I lost friendships because of how isolating disability is.

I know this isn’t the end of my life and I know this doesn’t make me any less of a person. But sometimes it feels as though my body has betrayed me. Sometimes I feel as though I’m useless if I can’t do what I used to do. I pity myself.

I know this is because of an unkind society that places value on people by how much they can work. But god I’m so angry and frustrated and sad. It’s so confusing, simultaneously knowing that actually you’re brilliant and strong and no less important than ableds and just feeling complete despair and grief. Grief for a life you knew or never can have.

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i think what a lot of able-bodied people don’t get is that sometimes, when we complain about being sick and in pain or vent about a frustrating situation, we don’t want advice or suggestions - we just want them to listen. we don’t want to be told about another miracle cure or to be told what to do by someone who isn’t even disabled. we just want a friendly listening ear. sometimes, the best thing you can do for a disabled friend or family member is to listen to them and show them sympathy

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image

It’s not exactly easy to be nice to yourself, feelings of worthlessness and inadequacy are what make it so difficult.

I often find myself thinking that it’s okay for someone else to do something, but if I do it I’ll agonize over it for weeks. It’s easy to forget that you are just as human as the people around you and difficult to accept.

Try to be as forgiving and loving towards yourself as you are to others.

I doubt you find your friends to be burdens or annoying. If you have a friend in crisis you never think of them as an inconvenience, it is just as unlikely that they view you as a burden.

You deserve to be loved.

Photo credit to photographer.

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