Join the Conversation on
125 people
0 stories
8 posts
Explore Our Newsletters
What's New in
See full photo


I walk the line of disability like a freaking tightrope. I have chronic fatigue syndrome and have since like December 2020. I’m medicated well enough that I don’t really consider myself disabled anymore, but I know I’m not ablebodied, and while I know there is no “oh you aren’t sick enough” philosophy, I feel that I’m not sick enough. It’s a weird feeling to be happy to function but to resent being sick all the same.

On another note, could anybody offer input? I woke up today with a yellow finger and yellowish knuckles on my right hand. Also please excuse how god awful my hands look in this comparison 😆 it’s not jaundice as it’s just my finger, and it’s not carotenemia because I do not consume enough things with the congruent compound for that. With that being said, anybody know what the deal is with this?

#chronicallyillteen #ChronicIllness #MyalgicEncephalomyelitis #ChronicPain

See full photo

The picture says it all #CheckInWithMe

I wish there was more I could say other than I am frustratingly the same. I do everything I can and nothing has changed. IIH is unrelenting and as I’ve said before, it’s basically a waiting game for now. Only the waiting game is not a very fun game. It’s actually quite painful. And exhausting. And lonely.

The only positive thing I can add is I did purchase this crewneck for myself and I can’t wait to get it. Any Harry Potter fans out there?

Anyway, I wish I had more to add to this, but I want to say I’m still hopeful for the future. There is hope for remission for me. I’m not going to be stuck at home for the rest of my life, and I truly believe that. It might not be exactly be the timeline I expected, but I believe in the life I’ve been dreaming of.

#IIH #IdiopathicIntracranialHypertension #IntracranialHypertension #IH #ChronicDailyHeadache #ChronicIllness #ChronicFatigue #chronicallyill #chronicallyillteen #chronicallymighty #RareDisease #ChronicallyHopeful #CheckInWithMe #HarryPotter

1 reaction 3 comments
See full photo

It’s been a hard week, but that’s okay

It’s been a hard week, in a number of ways. For starters, my headaches have kicked up in intensity, and my lack of sleep caught up with me all at once and sleep has become my full time job. This image really spoke to me when I saw it on Pinterest a little while ago. “Grieving the person I should be…” because this isn’t how I thought being eighteen would go. Grieving is a process and as I work through that process, I can let go more and more of that other version of myself that never came to be. Because this is who I am, not that other, healthier, persona I’ve created in my head. They never existed, and she never will. I think part of the grieving process is accepting who I am now, even if it’s not where I want to be. That still means I can have hard days, and today is definitely one of them. But it makes those hard days just a little bit easier.

#IIH #IdiopathicIntracranialHypertension #grieving #Grief #Quotes #Headache #BadDay #Baddays #CheckInWithMe #chronic #ChronicIllness #chronicallyillteen #chronicallyill


When You Lose Time to Chronic Illness

As I’m writing this, it is the end of Memorial Day weekend. The advertisements are in full swing, and the fact that I just graduated from high school has hit me like a truck.

I’ve been sick with Idiopathic Intracranial Hypertension since March. Since March, I’ve been stuck. Stuck in bed, stuck out of school, stuck out of work. I was diagnosed two days after my eighteenth birthday, and being a legal adult still feels like a foreign concept. (The only part of being eighteen I’ve accepted is going to an adult hospital now.)

All of my friends are throwing graduation parties, and I’ve been doing my best to show up, at least for a little while. Oftentimes, the conversation will turn to summer plans and beyond. My response is almost second nature: “Well it’ll depend on where I am.” Or maybe: “We’ll have to wait and see.”

There’s a lot of waiting that comes with chronic illness. Waiting for appointments. Waiting for tests. For medications to work. For insurance to cover this or that. I’m working to accept that waiting comes with the territory. And if it means I need to wait for the next stage of my life, well, I can work to accept that too. Maybe. 😉

#IIH #IdiopathicIntracranialHypertension #IntracranialHypertension #IH #RareDisease #chronicallyill #chronicallyillteen #ChronicIllness #CheerMeOn #CheckInWithMe #Waiting #HighSchool #College #Student


Guilt and Trouble Finding Love With A Chronic Illness

After watching Five Feet Apart I have some things that resonate so deeply with me.

I’ve yet to see people around me with chronic illnesses dive into the guilt and pain that comes with dating and trying to find love.

I am constantly finding myself thinking that no one could love a body so broken. No one could love someone so physically complex.

And the only people who understand what you go through are people who are also chronically ill. But how do you build a life with someone who is also sick? How do you take care of each other when you can hardly take care of yourself? When you both can’t work or can’t drive or can’t make a living, how do you survive with that relationship?

So I look for people who are able bodied and healthy, but they never really get what it’s like. It makes me feel so alone sometimes. How can I expect someone to love me like this? How can I place my burden upon them and be okay with that? How can I I place my medical bills, my appointments, my treatments, my pain, my lack of energy, my scars, my bruises, my wounds, my guilt, my mental breakdowns, my anxieties, my struggles and so much more on top of them? How do you share that with someone?! How do you live with putting your illnesses on top of someone else?

How can you expect someone not to walk away from that? It’s so much to handle most days I wonder how u handle it myself. And I remember it’s because I don’t have a choice.

I know there is someone out there, but until I meet them, how do I cope with that? A relationship with me is 20 times harder because of my health. It takes patience that even I don’t have most days.

Literally how can you expect someone to voluntarily watch you suffer. They would feel so helpless and so worried and have no way to help. I feel that way with my friends anyway. I would feel so bad giving that pain to someone else. Even if it was their choice.

How do you love a body that’s broken? How do you let someone love your broken body? How do you both deal with the pain? How do you share your pain? How is it even possible?

#SurvivorsGuilt #chronicallyillteen #FiveFeetApart

1 comment