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Lilly | Disability & Chronic Illness

@chronicallylills

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Chronic illness • Disability • Awareness 🧂🥄
T1D | POTS/SVT | Endo | Fibro
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Welcome to my little corner of the internet for the chronically ill, disabled, and anyone who’s ever felt misunderstood. 🤍If you’re looking for a community that gets it, you’re in the right place. Follow along—we’re making the invisible visible, together!🧂🥄❤️‍🩹. (IG butchered the photo quality pls forgive me🥲).
#ChronicIllness #DisabilityAdvocacy #InvisibleIllness #ChronicPain #Spoonie DisabilityAwareness by @chronicallylills

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7 days ago

My flare-up really said “add to cart.” 🛒🧾 Chronic illness comes with costs you can’t always see. The missed plans, lost energy, pain, and emotional toll are all part of the receipt. What would YOUR chronic illness receipt say? 👀 #chronicillness #spoontheory #wellness #invisibleillnessawareness #addtocart by @chronicallylills

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17 hours ago

October is Dysautonomia Awareness Month!🧂🥄💧

Dysautonomia can affect so many parts of the body, yet so much of it remains invisible. This month, I’m sharing my experience to help spread awareness, understanding, and compassion for those living with it or for anyone wanting to learn more.

What’s one thing you wish people knew about Dysautonomia?

#DysautonomiaAwareness #POTSAwareness #POTS #Dysautonomia #InvisibleIllness by @chronicallylills

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19 hours ago

Some days, managing Endometriosis looks like canceling plans, getting comfortable, and doing whatever I can to make the pain a little more bearable. 💛🌻

Today is one of those days.

Im grateful that there are products like the @myobiofficial Artemis 2.0 portable heating pad to help me on the harder days. ♡

If you’re having a high-pain day too, you’re not alone. 🫶🏻
#endometriosis #adenomyosis #endowarrior #endoexcision #endometriosissupport 🎗️
What’s one product you swear by, that makes the hard days a little easier? 👇🏼 by @chronicallylills

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3 days ago

Lately, I’ve been dealing with a mix of fatigue, dizziness, pain, weakness, and POTS symptoms that can make even everyday things feel exhausting. Some days my body feels like it’s running on empty, and treatment days have become an important part of helping me manage my symptoms and get a little bit of my quality of life back.

This time, I chose to include vitamin C in my infusion. Thankfully, I didn’t experience any side effects, and afterward I noticed an energy boost, less brain fog, and less pain. It’s encouraging to notice even small improvements and to learn what helps my body feel a little more supported.

This is what an infusion day looks like for me — the drive, the waiting, the treatment, and everything in between. It’s not always easy, but I’m learning that taking care of myself isn’t “giving in” to my illness. It’s giving my body the support it needs. 🫶🏻

Chronic illness treatment isn’t always an overnight fix. Sometimes progress looks like simply making it through the day, showing up for treatment, and hoping tomorrow feels a little lighter. 🤍

If you’re going through treatment too, I see you. You’re not alone. 🫂 #pots #svt #electrolytes #dysautonomia #spoonie by @chronicallylills

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3 days ago

October Slide is here… and for many of us with chronic illness, October doesn’t always feel like a fresh start. 🍂🩵

As we head into a Dysautonomia Awareness Month, I’m reminded that changes in seasons, routines, stress, illness, and even the weather can have a bigger impact on our bodies than people realize.

If you’re struggling more than usual right now, you’re not alone — and you don’t have to feel guilty for needing extra rest, accommodations, or support. 🫶🏼

What does “October Slide” look like for you? Let’s talk about it! 👇🏼

#POTSAwareness #POTS #Dysautonomia #OctoberSlide #ChronicIllness by @chronicallylills

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4 days ago

As vulnerable as this is, if sharing my story helps even one person feel less alone, feel seen, or realize they’re not fighting this battle by themselves, then I’ve done my job. I think one of the biggest struggles for people living with dynamic disabilities is how much your days and symptoms can fluctuate. This is your reminder, that having good days doesn’t invalidate your symptoms, minimize your pain, or mean you’re any less chronically ill. You can have moments of happiness, laughter, and feeling okay while still living with an illness that affects every part of your life. Your good days don’t erase your bad ones, and you never have to prove your pain to deserve compassion, understanding, or support.🫂❤️‍🩹🧂🥄
#chronicillness #invisibleillness #spoonie #typeone #pots by @chronicallylills

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8 days ago

With it being both suicide prevention and pain awareness month, I feel it’s important to discuss the connection between chronic pain, mental health, and suicide prevention.

Living with relentless pain, losing your independence, and watching your quality of life change can take an
unimaginable emotional toll.

For some, the hardest part isn’t just the pain itself, but feeling unheard, dismissed, or unable to access meaningful relief.

Pain management needs to be part of the suicide prevention conversation.
People living with chronic pain deserve more than being told to push through it. They deserve compassionate care, effective treatment options, mental health support, and the chance to live a life that feels worth living.❤️‍🩹

If we want to prevent suicide, we have to listen to people who are suffering and take their pain seriously. 🦋🤍

Chronic pain is more than a physical issue. And no one should have to suffer in silence. You are seen, you are loved, and your voice matters.🫂

#SuicidePrevention #ChronicPain #ChronicIllness #InvisibleIllness #PainManagement by @chronicallylills

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8 days ago

Living with a chronic illness is so much more than what people see on the outside. It’s the pain, the exhaustion, the grief of the life you thought you’d have, and the constant battle of trying to make your body cooperate.
Sometimes, all we need is a little understanding, a little patience, and to be believed when we say we’re struggling.
If you live with a chronic illness, what’s one thing you wish people understood? Let’s talk about it in the comments. ❤️‍🩹
#ChronicIllness #InvisibleIllness #ChronicPain #Spoonie #DisabilityAwareness by @chronicallylills

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9 days ago

After living with chronic illness and dealing with fatigue, pain, POTS symptoms, and unpredictable flares, I’m always looking for ways to better manage my symptoms and improve my quality of life.

A Myers’ Cocktail is an IV nutrient infusion that may contain things like magnesium, calcium, vitamin C, and B vitamins, depending on the provider and formulation.

I’m going into this with realistic expectations — this isn’t a cure, and I’m not saying it will work for everyone. I want to document MY experience and see whether I notice meaningful changes over time. 🤍

I’ll be tracking:
✨ Energy
✨ Pain
✨ Dizziness/POTS symptoms
✨ Headaches
✨ Sleep
✨ GI symptoms
✨ Recovery after flares
✨ Side effects
✨ How long any changes last

If you’re interested, I’ll be sharing updates as I go — the good, the bad, and whether I actually notice a difference.

So far, I haven’t noticed a slight energy increase, improved GI symptoms, and it seems to control my POTS/SVT. I’ve noticed less tachycardia since starting treatments.
However, there was one day I experienced nausea, abdominal pain, hot flashes etc for the following hours after. After doing my own research, I decided to try my most recent infusion without the Vitamin C, as that can cause some of those GI symptoms I mentioned above.
That treatment went well with no side effects, so going forward I’m not sure if I will get the Vitamin C.

👇🏼Have you tried Iv infusions for POTS management?

#IVInfusion #POTS #Fibromyalgia #Endometriosis #InvisibleIllness by @chronicallylills

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12 days ago

living with chronic illness means learning how to make the little things a bit easier. 🧂🥄

these are some of the things I like having around for rough symptom days — from comfort items to things that help me conserve energy.
none of these “fix” chronic illness — but sometimes the goal isn’t fixing the day. sometimes it’s making the day more manageable. 🤍🫂

👇🏼what is YOUR chronic illness must-have that you swear by?

#ChronicIllness #Spoonie #DisabilityAwareness #POTS #AmazonMustHaves by @chronicallylills

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12 days ago

March is Endometriosis Awareness Month!! 🌟💛🎗

Endometriosis is just as common as Diabetes or Asthma, but because it mainly effects females only - it is less funded and less studied compared to other conditions.

Given the fact that Endometriosis is so understudied/underfunded it is so important to me to spread awareness. In order for Endometriosis sufferers to raise money for research, receive better care & treatments options, and hopefully one day find a cure - spreading awareness is vital.

Living with chronic pain is not normal, and it’s shouldn’t take an average of 7 years just to get a diagnosis.

My hope is that one day, we can educate enough people on Endometriosis so that Endo sufferers don’t have to live 7 years of their life in chronic pain, without answers or a diagnosis. Those are years of their life they will never be able to get back.

I was one of the lucky ones you could say. I caught my Endo fairly early, but with no help from any specialist or OB/GYN. I had to keep advocating for myself and saw specialist after specialist until one finally listened to me.
If it wasn’t for the Endo community I would’ve gave up before receiving a diagnosis/excision surgery and I would still be living everyday in excruciating pain.

Though I had excision surgery and recently removed all my Endometriosis, I still battle many of the symptoms everyday.

All that being said,
please take some time this month to educate yourself, do your own research, ask questions, and learn more about Endometriosis and the Endo Community.

#endometriosis #endowarrior #endostrong🎗 #endometriosisawareness #spreadawareness #endopain #birthcontrol #1in10 #endobelly #endosymptoms #endometriosissupport #endometriosissymptoms by @chronicallylills

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4 years ago