Hi Hello! I'm Caroline.
  • Guest Posting
  • My Favorite Products
  • Privacy Policy
  • Home
  • About Me
  • Blog
    • Living With Chronic Illness
    • Mental Health
    • Tips to Make Life Easier
    • Self Care
    • Personal Growth
  • Must Have Items

Functioning Tired

naps are not only welcomed, but encouraged

Blog, Living With Chronic Illness · May 3, 2020

10 Revealing Confessions About Being Young And Chronically Ill

One of the biggest struggles related to having a chronic illness in your twenties is the feeling of isolation that can come along with it. It can be extremely difficult – and at some times, seemingly impossible – to explain to the world that your body does not function in the ways that society expects.

“But you don’t look sick” is a phrase that is sure to make any 20-something living with chronic illness want to either punch you in the nose (hard) or smack their head into the nearest brick wall.

Living with a chronic illness in your twenties means learning to deal with FOMO, having to explain to your professors why you have to leave class often, and increased scrutiny from the world around you. Not fitting into society’s ideal mold of what disabled looks like can be challenging.

I asked 10 women to share with you what they wish their peers could understand about living with chronic illness. Their responses are below.

What Do You Wish Your Peers Understood About Life With Chronic Illness In Your Teens And Twenties?

Sydnie (21) – @sydnie_mayy

Living with: Ankylosing Spondylitis

I am a “normal” looking girl in my 20s living with an illness that disables me from time to time. 

The toughest thing about having an invisible illness is just that, the fact that it’s invisible. I wish my peers knew that whenever I struggle, I do it behind a smile. I don’t want people to see me struggling, so I put on a brave face. 

It almost angers me when older people claim you’re “fit and healthy” just because you’re younger, and do not suffer with the same side effects of those resulting from aging. Little do they know Ankylosing Spondylitis has similar and probably worse effects on the back, spine and other areas of the body. 

I wish people understood that an invisible illness does not mean it doesn’t exist. 

Heather (18) – @myedsjourney

Living with: Dysautonomia/Hypermobile Ehlers-danlos syndrome/IBS/Hemiplegic Migraines

That I’m not going to be the same as I was. That I have to think about if it’s safe for me to do or if it’s going to make my dysautonomia or hEDS flair after doing it.

And that I miss doing things normal teens do, like going shopping with friends for hours and not having to use a cane or go to parties without having to worry about me passing out, having a migraine episode or dislocating one of my joints.

Alice (24) – @__amaria_

Living with: Endometriosis and ME/CFS

Well honestly I have very few friends due to my limitations. But if anyone has a friend with chronic illness, I’d like them to know just how touching it is when someone actually researches, or even just looks into our condition(s). 

I don’t talk to friends much about my illnesses as I guess it helps me feel more normal for the brief period I manage to spend with them. For those times, I have prepared, I have planned my energy, I have made sure the next few days will be spent resting to recover. 

I have very very limited energy. I may seem fine, even normal, but that’s because I’m really really trying. And it’s exhausting. That doesn’t mean it isn’t enjoyable… I just have to plan well, I may only be able to manage an hour or two, or have to leave early. 

View this post on Instagram

Things chronically ill people need to hear❤️ • • • • #diabetes #fatigue #pots #dysautonomia #multiplesclerosis #ulcerativecolitis #arthritis #rheumatoidarthritis #chronicpain #sicklecell #lymedisease #ibs #ibd #lupus #autoimmunedisease #fibromyalgia #endometriosis #ptsd #pcos #migraines #ehlersdanlos #crohns #depression #anxiety #chronicillness#idiopathicthrombocytopenicpurpura #spoonie #invisibleillness #thechroniccommunity

A post shared by The Chronic Community (@thechroniccommunity) on Mar 18, 2019 at 10:40am PDT

Hannah (23) – @giffindor

Living with: Type 1 Diabetes, Polymyositis, Interstitial Lung Disease and Atrial Fibrillation

My life is unpredictable, I wake up every day and have to base all of my plans around how my body feels. One day I may feel really good and can get a lot done, while other days I can barely get out of bed or lift my arms.

Just because I am young and don’t look sick doesn’t mean my illnesses aren’t there, you just can’t see them. I think it’s easy for people to dismiss me and my illnesses since they are invisible and you can’t see them on the outside of my body and it’s difficult as a young person living in a world where we are surrounded by social media platforms that display our lives.

I can’t show you that my lungs only work at 52%, I can’t show you that I haven’t slept in 3 days.

However, I can tell my story and hope that people understand and are patient with me. It’s not easy being friends with someone who is this sick, so my social life has definitely been impacted.

I guess at the end of the day, I just want people to know that just by looking at someone, you don’t know their story; you don’t know what they’re going through… so just be kind.

Layla (20) – @Blogbylayla

Living with: Rheumatoid Arthritis, Lupus, Fibromyalgia, Painful Bladder Syndrome, IBS and undiagnosed body tremors

That it isn’t going to go away, it’s chronic. Just because I have one good day does not mean I am better. 

I was lucky to have a good day because half the other days are not good days. 

Stopping a medication does not mean I’m getting better, it means it’s not working so what’s the point of taking it anymore. 

Related Post: What Is It Like To Be Diagnosed With A Chronic Illness In Your 20s?

Tanya (22) – @tans.and.co

Living with: General Hypermobility Spectrum Disorder, POTS, Fibromyalgia

First, I want to be believed. That means being told that they know I am doing everything I can, not that I can do everything I put my mind to (I swear I’m not just lazy). Not only do I wish I was better at college, but trust me, I want to go out dancing as much as they do.

Second, I want them to know I hate asking for help, and thank them for not always making me. Sometimes, it’s in the little things, like serving themselves coffee at my house so I don’t have to.

Last, I need them to know I miss them, and I miss me too. But I wish my friends knew I’m grateful for them even though things have changed (I have changed) and I hope they stick with me through the chronic part of my illness. 

Gracie (23) – @goodnessgracie__

Living with: Type 1 Diabetes

I wish my peers could see the struggles of my illness. No one sees me when I’m at my worst (I do try to hide it). They don’t understand how much time goes into just keeping me alive. 

They also don’t understand that having an illness can really impact my life. If I can’t go out it doesn’t mean I’m lying… it means I am sick! 

Alicia (20)

Living with: POTS and chronic joint pain. Actual diagnosis is to be determined. Severe Asthma.

My biggest problem is trying to explain my limitations when I don’t even understand them myself most of the time. It’s so hard feeling pretty okay and almost normal one day, to being stuck in bed feeling awful the next. Planning my life feels impossible sometimes. I am somebody that loves to travel, but dreads it at the same time because I know it’ll wear me out. 

Cutting out gluten cannot fix everything. 

No one with chronic illness/pain is exactly the same. I was forced to take time off from work recently because of health issues (I had a doctors note). The next day, I received a nasty message from a woman twice my age in another department telling me that I should be at work because she was there and she has arthritis. 

Laurie (25) – @better_by_the_beat

Living with: Postural Orthostatic Tachycardia Syndrome (POTS) & Hashimoto’s Thyroiditis

I wish people would understand that my symptoms can flare up at any time, day or night, without control. That being said, sometimes I have to cancel plans, go home early, or stay in.

I want my peers to know that I’m not being antisocial, and it’s not because I’m uninterested in hanging out with them. I feel like sometimes people can take it the wrong way when you cancel last minute.

Trust me, I wish I could go out and do unlimited fun stuff without my illness holding me back! I’m just trying to take care of myself and sometimes that means taking it easy so that I can be well enough for the next fun thing. 

So, shout out to the general public: Please don’t stop inviting your chronically ill friends to things! We don’t want to be forgotten or excluded even if we aren’t sure if we’ll be able to attend! 

Krystal (28) – @Gal_in_boots

Living with: RDS/CRPS, EDS, Migraines, Anxiety

I wish that sometimes I could just be left alone. 

Yes, it’s nice to know that you have people there if you need them but sometimes I just want to rest. I don’t want to talk, I just want to push through ANOTHER rough time to just let it do it’s thing and then once I get back on track I’ll be in touch. 

Just because I don’t want to talk doesn’t mean, “oh my gosh” there’s something wrong. 

Chronic means most days we feel off so we’re used to it when it hits hard we want it to pass and move on, hoping it won’t come back but knowing it probably will.

 

I want to thank all of the wonderful women who contributed to this post and who shared their experiences and feelings about this topic. I hope that this article helped gain some perspective as to what your friends living with chronic and invisible illnesses want you to know. 

 

Posted In: Blog, Living With Chronic Illness

You’ll Also Love

21 Items You Need To Include in a Travel First Aid Kit
woman laying on dock surrounded by waterPOTS Diagnosis Have You Feeling Lost? Heres Everything You Need To Know
How To Share The News About A Chronic Illness Diagnosis
Next Post >

Here Are The Powerful Effects Of Trauma On The Brain And Body

Search

Archives

  • December 2020
  • July 2020
  • May 2020
  • April 2020
  • March 2020
  • February 2020
  • January 2020
  • December 2019
Lyme disease can F off. There I said it.

Latest on Instagram

functioningtired

Bloom: to flourish or thrive 🌺⁣ ⁣ So I did Bloom: to flourish or thrive 🌺⁣
⁣
So I did a thing yesterday. I wanted this tattoo as I started lyme treatment to remind me that this is a journey and that I am growing and healing. I chose the amsonia flower because it represents endurance, strength and determination. ⁣
⁣
I know that this journey will be hard. I am scared, anxious, and exhausted at the thought of what is to come, but I know that it gets worse before it gets better. I want to feel better, to feel healthy, to be able to live my life without having it be dominated by my health. And that starts here. ⁣
⁣
Special thanks to Maren at Tattoo Me Charlotte for this🥰 I am in love ⁣
⁣
⁣
⁣
⁣
⁣
⁣
Image description: girl holding forearm to camera with a tattoo reading “bloom” in script font connected to an amsonia flower drawn in thin lines, located right below elbow crease
For a long time now, I have had a lot of trouble w For a long time now, I have had a lot of trouble with questioning myself. Questioning what other people think of me, how I'm being perceived, if I'm good enough. I am someone with ~big feelings~ and I wear them on my sleeve. When I am passionate about something, you know it. But at the same time, when I am frustrated or overwhelmed, you 𝙠𝙣𝙤𝙬 it. ⁣⁣
⁣⁣
I've had a lot of people throughout my life who have made me feel ashamed about this. Have told me I am "too much" and to tone it back, to be more agreeable, to go more with the crowd. Every time someone says that to me, I question myself. And I keep questioning myself over and over, thinking that maybe they are right. ⁣⁣
⁣⁣
Yesterday I found my senior book from my organization that I was a part of in college. So many of the messages written made me realize that I don't want to question myself anymore. I don't want to make myself smaller to fit someone else's ideal. ⁣⁣
⁣⁣
There were messages saying that I'm the most authentic person they know. That they admire my hard work, dedication, and passion. A few of the younger girls telling me that they look up to me. ⁣⁣
⁣⁣
I'm always so focused on the people telling me what I'm doing wrong that I didn't take the time to stop and listen to the people telling me what I'm doing right. I will never be able to please everyone. I'm proud of my ~big feelings~ because they make me who I am. I am authentic, and passionate, and have a massive heart. I'm no longer listening to the opinions of people who cannot recognize that. ⁣
⁣
⁣
⁣
⁣
⁣
⁣
⁣
Image description: beige tall grass against a blue sky with the words “you are the only one who gets to decide what you will be remembered for” - taylor swift quoted above and below the photo
I don't even know how to write this. This week has I don't even know how to write this. This week has been a nightmare. We got the results back from the ERMI test and found out we have mold in our house, which is not surprising given both me and one of my roommates were having increasing health issues. Due to this and just where they are at in their lives my roommates are not going to renew and are most likely moving out of Charlotte. ⠀
⠀
Between covid and being so sick I haven't been able to make any close friends, and living with strangers and moving again while starting treatment for lyme feels impossible and like too much. I can't afford to live by myself and with my health I just shouldn't. ⠀
⠀
This means I'm most likely going to have to leave Charlotte and go back to Pennsylvania. I feel sick even writing that. All I have ever wanted was to get away. To start over and not be surrounded by so many reminders of things that hurt. I started saving almost every penny I ever got starting when I was like 9 years old, and I kept it up until I finally moved out at 18. I used to fantasize about getting on a greyhound and just disappearing. ⠀
⠀
I wanted this 𝙨𝙤 badly. I worked so hard to get here. Charlotte is the only place that has ever felt like home to me, and now I have to go back to a place that feels like a prison. ⠀
⠀
I am just.... devastated. I feel so defeated. I feel like this disease has stolen everything that I care about and I don't know how to keep fighting when it is so hard. ⠀
⠀
⠀
⠀
⠀
Image description: rainbow paint on concrete trail
here is a photo from a few weeks ago when I got my here is a photo from a few weeks ago when I got my HIDA scan done and thought I was gonna die for a hot second but then I didn’t and even went on to have a mildly productive day ✨ ⠀
⠀
⠀
⠀
⠀
⠀
⠀
⠀
⠀
Image description: girl wearing a “standing is my cardio - postural orthostatic tachycardia syndrome” shirt laying down with IV in arm and black mask on lower half of face
So I wanted to give an update about my @hidratespa So I wanted to give an update about my @hidratespark water bottle since a lot of you messaged me asking about it after seeing it on my stories!! If you didn’t see my stories, this bottle tracks your fluid intake and sends you reminders based on the goal you set.⠀
⠀
I bought this bottle because one of my biggest struggles is getting enough fluids, which makes my POTS way worse and therefore makes me feel 💩💩 overall. ⠀
⠀
This bottle has been super helpful in managing my fluid intake and has definitely helped me increase my fluids. Previously I was drinking less than .5L a day and am now getting close to 2L a day. The bottle will glow when you are supposed to drink, but it will also send you reminders to your phone or apple watch. ⠀
⠀
You can track your fluid intake in the app, see what your current target is, and even add friends to do challenges and stuff. I don’t have any friends who use this bottle who I could add, but if any of you get this bottle hmu and we can be hydrated homies ✌🏼💧 ⠀
 ⠀
⠀
⠀
⠀
⠀
⠀
Image description: dark grey french bulldog sits on a wooden bench with green grass and small shed in the background behind him and a hidrate spark water bottle sitting on the bench next to him. A sun ray glints across the photo.
She said, "I'll love you forever, or find somethin She said, "I'll love you forever, or find something better“ 🖤⠀
⠀
⠀
⠀
⠀
⠀
⠀
⠀
⠀
⠀
⠀
⠀
⠀
Image 1 description: girl standing in shadows from window blinds wearing white t shirt and light blue acid wash jeans looking down and twisting shirt in hands; Image 2 description: girl standing in shadows from window blinds wearing white t shirt and light blue acid wash jeans leaning forward smiling at camera and twisting shirt in hands
drop a 🥺🥰💖 in the comments if ur a single drop a 🥺🥰💖 in the comments if ur a single pringle and need a valentine, i gotchu ⠀
⠀
⠀
⠀
⠀
⠀
⠀
⠀
⠀
⠀
⠀
Image description: girl looking down into camera laughing with blonde wavy hair spilling over her face, burgundy/pink eyeshadows and a light blue shirt
Load More... Follow on Instagram
  • Privacy Policy
  • Get In Touch!
  • Site Disclosure

Copyright © 2021 Functioning Tired · Theme by 17th Avenue