spoonie

Living with a chronic health condition can mean redefining and reflecting on your ideas of normalcy. From those days where your symptoms seem overbearing, to the days where you're feeling "good" and ready to tackle what the days brings, normal can be relative, flexible, or even a distant memory.

When do you feel like your last "normal" day was?

📚 If you need something to read today, check out Syrena Clark's story here:
themighty.com/topic/schizoaffective-disorder/looking-back-li...

#ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis #Hospital #Cancer #Anxiety #PTSD #CheckInWithMe

When you live with a complex or rare disease, it’s common to have some bumps in the road or delays in getting a proper diagnosis. Depending on your symptoms and even knowledge on your condition, it’s even possible to be misdiagnosed. (Which, in a lot of ways, is the same as being undiagnosed.)

What have your experiences been like?

📖 Need a Mighty read on the subject? Check out Kristi Moore’s experience here:
themighty.com/topic/vocal-cord-dysfunction/signs-of-misdiagn...

#Undiagnosed #CheckInWithMe #ChronicPain #ChronicIllness #RareDisease #MentalHealth #Spoonie

Navigating the health care system when you have a condition like EDS can be challenging and overwhelming sometimes, especially when met with others who aren’t as knowledgeable about what it’s like to live with your diagnosis.

But sometimes, seeking assistance from patient advocates who are educated and willing to put in work to get you the help and treatment you need is invaluable.

What have your experiences been like with patient advocates? Did you find one that was helpful to you?

✅ Want some insight from a personal experience? Check out what ChristieCox has to say in recent Mighty article here: themighty.com/topic/ehlers-danlos-syndrome/find-hypermobile-...

#EhlersDanlosSyndrome #RareDisease #Hypermobility #EhlersDanlosSociety #ChronicIllnessEDS
#HypermobileTypeEDS #ChronicIllness #ChronicPain #Spoonie #Fibromyalgia
#MentalHealth #Anxiety #Depression

As I walk in my recovery journey, I often find myself at a crossroads with my comfort zone. On one hand, I find myself choosing what’s most familiar to me because it easier to access, but on the other hand I know that change and new habits can benefit my growth, especially when it comes to self-care and consistency 🤔.

Something I’m trying that I know will benefit me and my mental health —and is out of my comfort zone — is reaching out and talking to someone when I catch myself overthinking. It’s so easy for me to go hours feeling overwhelmed when I know it would be helpful to talk out my concerns with someone else.

What about you? What can you do outside your comfort zone that will benefit your journey?

#Selfcare #CheckInWithMe #Grief #MentalHealth #Anxiety #Depression #BipolarDisorder #BorderlinePersonalityDisorder #ObsessiveCompulsiveDisorder #PTSD #EatingDisorders #ChronicIllness #RareDisease #ChronicPain #Spoonie #EhlersDanlosSyndrome #CrohnsDisease #Cancer #Migraine #Fibromyalgia #MultipleSclerosis

Gather round, ye rescheduling Mighties. Welcome to the club. You’re safe here.

It feels like a rather mundane question, but there’s a lot that goes into rescheduling an appointment — how we feel on the day (sometimes leaving the house just isn’t in the cards), what’s going on in the people’s lives around us, transportation snafus, or maybe even cost/insurance workarounds.

Here are a few recent schedules from Mighty staff: an annual OB-GYN exam (for two of us!), pelvic PT, and a couple of urology appointments. SO FUN.

What about you?

#MightyMinute #MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #Disability #RareDisease #CheckInWithMe #Spoonie #Therapy

When you live with a disability or have a chronic health condition, sometimes it’s necessary to ask for help. Whether it’s to assist with chores or other everyday activities or errands, relying on others is how the task gets done and thats totally OK, we definitely can relate 🙋.

What do you have to rely on others for? How does that make you feel?

P.S. There’s no shame at all in asking for the help you need.

❤️ If you’re looking for something Mighty to read on the topic, check out Larissa Martin’s experiences here:
themighty.com/topic/cerebral-palsy/personal-care-needs-bathr...

#ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis #Hospital #Cancer #Anxiety #PTSD #CheckInWithMe

I’m sick of trying to navigate a Healthcare system that doesn’t give a shit about me. ⚛️ ##Ableism #ChronicIllness #Disability #disabilityawareness #DisabilityInclusion #DisabilityRights #Spoonie #spooniesupport #spoonielife #zebrastrong

Living with chronic or complex health conditions can sometimes mean needing to explain and express your thoughts, concerns, and knowledge of your diagnosis to anyone and everyone… yes, even to your doctor.

What’s been your experience? What emotions pop up in those moments when it feels like you’re the expert in the room?

📚 Want a relevant Mighty read? Check out Tierra Drollinger’s experience in her recent Mighty article here: themighty.com/topic/chronic-pain/know-more-than-your-pain-ma...

#ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis #Hospital #Cancer #Anxiety #PTSD #CheckInWithMe