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.
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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.
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!
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.