Invisible Illness

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Invisible Illness
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    ✨ Have you checked out our "When Chronic Pain Comes to Work and School" Collection? ✨

    🔔 Ring Ring 🔔 Special delivery! 📦

    Are you navigating school or the workplace with chronic pain and need support, tips, tricks, or anything in between? If so, this collection is for you!

    P.S. As a reminder, Collections are like playlists, but for your health. Our editors have selected the best and most helpful of The Mighty just for you.

    #ChronicPain #ChronicIllness #RareDisease #CheckInWithMe #Fibromyalgia #EhlersDanlosSyndrome #RheumatoidArthritis #Migraine #PosturalOrthostaticTachycardiaSyndrome #Lupus #AutoimmuneDisease #Disability #InvisibleIllness #Spoonie #MentalHealth

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    For all my Lymies out there

    I’m currently working on my book “Predictably Unpredictable”- a book all about my lyme journey and then some.

    I’m searching for anyone who would want to share their story/testimony/transcript- whatever you’d like to call it, so I can include others stories in my book. [I am not using names in this book- as I respect doctors and patients privacy, so you will be given a name for my book]

    If you’re interested, I would LOVE to hear from you. Tell me your story, so I can tell the world. #stopthesilence #ChronicLymeDisease #Babesiosis #LymeWarrior #Bartonella #InvisibleIllness

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    I may look healthy enough, but I have wounds and scars you can't see. When I warn people of my "issues", they look at me and dismiss or minimize them. They think because I look healthy that they can't be all that bad. That is because to the naked eye, they are invisible. When people encounter me and I begin to value our interactions and relationships, that's when my invisible "issues" become visible. That is when they realize that what I warned them about is true. That is when they begin to distance themselves from me. And, eventually, that is when they walk away from me. Unfortunately this compounds my "issues" and causes them to become even more debilitating. It reopens wounds and continues a cycle of victimization, thus making me "sicker". This is the nature of my invisible trauma which, after repeated cycles, has morphed into mood disorders and finally a personality disorder. It has gone from me having "mental issues" to a complicated mental illness. Just because you can't see my wounds, scars, trauma, and illness, it doesn't mean they aren't there. It's time we put faces to these illnesses so that others can see that not all illnesses are readily apparent. Perhaps then we can change the perspective of what mental illness really looks like. #MentalHealth #MentalIllness #Trauma #wounds #Scars #invisible #InvisibleIllness

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    How has art changed your life?

    Art can do many things, and from personal experience I’ve found that it’s helped me express myself better. Without the lens of art, I didn’t know how complex my mind was and how many creative ideas I could come up with. Art has opened so many doors for me and I’m extremely grateful!

    In what ways has art changed your life?

    🎨 Need a relatable Mighty story to read? Check out Allison Lohrenz’s journey with art here:

    #CheckInWithMe #DistractMe #MentalHealth #CheerMeOn #ChronicIllness #Disability #InvisibleIllness

    8 reactions 2 comments
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    The Jacaranda on Belonging

    I love what the Jacaranda has to say about belonging, and letting go of injuries. Just thinking of this cheery tree is a comforting summery thought for the dark of winter. "Plant Talk" is my book about nature's support for sickness and suffering with illustrations by Caroline Bagnall. Currently editing the first draft.

    #plantlove #plantmedicine #plantwisdom #plantvoices #Selflove #selfcare #anxietyrelief #UlcerativeColitis #AnalCancer #ChronicIllness #ChronicPain #InvisibleIllness #PTSD #crohnsandcolitisawareness #crohnsdiseaseawareness #crohnandcolitisawarenessweek #crohnscolitis #crohnsandcolitis #crohnswarrior #CrohnsDisease #crohnssurvivor

    5 reactions 1 comment

    Jan 6, 2023

    Today I’m feeling quite awful. My brain feels in the clouds, anxiety level ridiculous, left side weakness. My extremities don’t want to do what I tell them to do. There’s a misfire between my brain and my body. I’m just under 2 months of being ill for 5 years. 5 years. Our youngest daughter just turned 5. She doesn’t even know who I am. The real me. The not sick me. The fun me. The active me.

    I’m feeling so down, hopeless, sad, guilty. A burden.

    I’ve been able to stay somewhat positive- as much as one can with this disease- but 5 years? That’s a big chunk of time. Our oldest son has 5 years of the real me. Our middle child had 3 and our youngest had zero.

    It’s wild to me how an illness can- for me- in a matter for just 3 days take over your entire life. Your whole being. Your soul.

    I’m exhausted. I’m so sick of being sick. #ChronicLymeDisease #Babesiosis #Bartonella #LymeDisease #InvisibleIllness #LymeWarrior

    9 reactions 5 comments
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    Travel Agent for Complex Medical Care and Special Needs

    Hi everyone. I used to be on here but I can’t remember my login or the email I used so I am starting a new one. I am mom to two young adults with cystic fibrosis and other health issues. I have RA and other conditions as well. I had to change my career due to the risk of COVID and my son’s transplant not to mention the kids CF in general. I am an esthetician and makeup artist so I touch people’s faces for a living. So during the pandemic I started thinking what I can do now since I am 50+ and worked cosmetics since I was 17. I have always dreamed of working as a travel planner/advisor/agent. I travelled a lot as a kid due to my dad’s work and I picked up the travel bug while I was still in diapers. I found out that due to the pandemic people are relying more on travel advisors more than ever. Then I wanted to narrow down my specialty/niche. I figured it out, I hope. I have had to figure a lot of things out traveling with my kids, especially our son. Meds galore, some refrigerated, vest compression machines(2),, nebulizers, nebs, feed pump, supplemental feed, tubing, feed bags, plenty of snacks traveling, wheelchairs and fluid at all times. I had to research hospitals in London when we went on my son’s make-a-wish so we would know where to go just in case. A plan A plan B Plan c just in case. Then for my sons transplant which we had to relocate for and my daughter’s make-a-wish. These experiences taught me so much, not to mention seeing what my fellow moms would do in order to travel. So have decided to help chronically ill and special needs travelers and their caregivers. Everyone deserves the opportunity to explore this beautiful World and I would feel honored to help facilitate this. I started my business several months ago and found out there is a great need for this. I have been learning so much and have been working with some clients already, some with challenges and also some great family, leisure & luxury trips. I am so glad I made this change. I guess a few good things have come from the pandemic. I have decided to not charge my clients for medical travel advice. I hope to help as many people as I can.
    #Travel #travelagent #specialneedstravel #medicaltravel #sunflowerlanyard #InvisibleIllness #ChronicIllness #CysticFibrosis #Transplant #pancreatitis #ChronicPancreatitis #tubefeeds

    3 reactions 1 comment

    Dirty Looks

    Yes, I wear lipstick. Yes, Eminem was playing from my car. Yes, I am 44 years old. Yes, I had to get groceries before the winter storm arrived. Yes, I have handicapped plates. Yes, the car belongs to me as do the plates. (❗️AND❗️) Yes, I see your dirty looks, glaring, shaking of heads, whispering and ignorant assumptions of what a handicapped person looks like. I owe you no explanation of my disability. You are not entitled to my health history. The audacity of people to verbalize comments 'that's a handicapped parking spot,' 'stop using your grandma car,' 'I'm going to report you.'
    Listen assholes, I have more metal in my body than an aluminum can recycling center. I have Avascular Necrosis (AVN) or Osteonecrosis. I have rods, pins, plates, screws etc holding this body together. My hips went first. Bilateral hip replacements. Second, my left shoulder. Shoulder replaced. Third, knees. Bilateral knee replacements. Fourth, left ankle. Same story, same dance.
    Like most, some days are better than others. Sometimes I need a cane, sometimes I don't. Sometimes I can get in/out of my car with minimal difficulty. Other times it takes me 10 minutes to align my hips, legs and feet to the ground.
    Basically FK YOU and your dirty looks. #AvascularNecrosis #Osteonecrosis #ChronicIllness #ChronicPain #InvisibleDisability #InvisibleIllness #Disability #ButYouDontLookSick #Youdont knowme

    34 reactions 7 comments

    Gentle reminder -

    that if you're out here feeling as though you haven't had a "big year" this year, thats okay.

    While social media becomes flooded with posts from our pals this week about how massive 2022 has been for them, it can be easy to feel a little deflated watching the endless highlights reel of handsome triumphs and successes.

    For some of us, fatigue stood in the way of our goals, pain stole some of our best laid plans, perhaps we had to make sacrifices, perhaps our lives were picked up and thrown in ways we did not see coming. All of these things are okay.

    Let's reframe for a second and consider all of the things we did achieve.

    Getting up each day.

    Still being here.

    Fighting for an answer.

    Not giving up.

    Eating a meal. Or two, or three.

    Advocating for ourselves.

    Advocating for others.

    Reaching out to someone.


    Helping someone else.

    Being an incredible friend, colleague, parent, relative.

    Loving ourselves.

    Forgiving ourselves.

    Looking ourselves in the eye and-

    Still getting up - every, single, day.

    May our strength to hold on and our love for each other continue to be bigger than the waves that try to break us.

    If you're reading this, thank you for being here. It's been a big ol' year. x

    #MentalHealth #ChronicIllness #InvisibleIllness #2022

    7 reactions 2 comments