Undiagnosed

“So what are your plans for the future “

My old councilor once asked me .

“ Hope I have one “ I responded with a witty chuckle .

He busted up laughing then said “ No really .. what are your plans for the future “.

I had to be honest and tell him I stopped planning for the future long ago .

Becuase of my illnesses in my eyes life had become an hour by hour , minute by minute situation .

Approach it with no plans , just a “fly by the seat of your pants “ situation. And hope you make it to the “next level . “

Sorrow filled his eyes as he told me .

“ The things you really really want . You have to plan for .

I want you to do one thing that will go towards your future “

And the thought of that terrified me .

( Yep I am THAT big of a commit-a - phobic )

But here I am 3 years later .
And Today I went to the bank and finally took that advice .

And it felt so good .

Most people in my life viewed this act as something super small

Heck it probably is

But it gave me a bit more hope in the big beautiful “ maybes” the future might bring

And in the season of life I am in . That little step meant everything

I challenge you to make one little act , one little plan for the future , and see just how good it feels ❤️ #MightyTogether #CommonVariableImmuneDeficiency #RareDisease #MentalHealth #Anxiety #Undiagnosed #autoimmune #MCAS #ChronicIllness #ChronicPain

for my fellow mighties who need to hear this today. hear it. then know it. then believe it. stronger together 💪🏼❤️

#ChronicIllness #MentalHealth #Depression #Anxiety #PTSD #Trauma #MyalgicEncephalomyelitis #ObsessiveCompulsiveDisorder #Disability #Undiagnosed

surrendering should never be confused with sinking. when we surrender, we humbly recognize our powerlessness; when we sink, we abandon our agency to do anything about it. to surrender is to give ourselves permission to accept unpleasant circumstances because they are happening whether we like it or not. to sink however, is to ultimately give ourselves passive permission to witness our own self-destruction. what strikes me most in both scenarios is the inherent giving process found in each. in the case of giving in and surrendering, the gift is born of self-compassion and hope. whereas giving up and sinking is a gift born of release when we can no longer entertain an alternative - not because there isn’t one, but rather the water has tragically become too murky to see it. may we all give to ourselves wisely. may we all feel the softening of a surrender and not the sabotage of a sink. and in the end, may we all choose a life that is lovingly livable.

#ChronicIllness #Depression #SuicidalThoughts #MyalgicEncephalomyelitis #Anxiety #Trauma #Suicide #ChronicFatigue #Grief #MentalHealth #PTSD #ObsessiveCompulsiveDisorder #AutoimmuneThyroidDisease #Disability #IfYouFeelHopeless #Undiagnosed #ChronicPain

in a world that’s perfectly packaged in black and white, it’s easy to convince ourselves we are either this or that, broken or whole, capable or incapable. there can be great comfort in this cocoon. by doing so though, we prevent the peace of the paradox which allows (and in fact insists on) room for both/and. when we learn to greet the greys, a whole world can open up to us and for us. what colors will you see today? 🖤🤍💖

#ChronicIllness #MyalgicEncephalomyelitis #ChronicFatigue #Depression #Anxiety #IfYouFeelHopeless #Grief #MentalHealth #ObsessiveCompulsiveDisorder #Undiagnosed #ChronicPain #Trauma #Disability

hi fellow mighties. this is my first post in a new series i created based on my experiences, both life-giving and life-draining, since being struck by a debilitating disease 2 ½ years ago. i’m quite far from being an expert on chronic illness (is anybody ever?) but my life will forever be altered into before and after. let’s just say i am certainly still figuring out after. in the meantime, i hope any sentiments i can share offer some support and solace to others walking the same path. sometimes it just helps to know you’re not alone. sometimes it just helps to know there are others in the same situation who have learned not just to survive but thrive. and sometimes, just sometimes, we can find helping hearts along the way who are willing to weave some love and light into our lives if we find the courage and vulnerability to let them in. feel free to share this with someone who needs to hear it

#ChronicIllness #MyalgicEncephalomyelitis #Depression #Anxiety #ChronicFatigue #IfYouFeelHopeless #Grief #MentalHealth #ObsessiveCompulsiveDisorder #ChronicPain #Undiagnosed #Trauma #Disability

I’m 47 and have been living with chronic pain and profound fatigue for years now. I rely on a wheelchair for things like shopping or walking the dog. I can’t stand for long or walk very far. Everyday things—things I used to take for granted—are now major obstacles.

Despite countless tests, appointments, and even private consultations, I still don’t have a clear diagnosis. Most recently, a private doctor suggested possible hEDS (hypermobile Ehlers-Danlos Syndrome) or POTS (Postural Orthostatic Tachycardia Syndrome), but also said that “even if it is one of those, there’s not much we can do.” He encouraged me to just accept things.

But I can’t accept the idea that I’m just stuck like this without even a name for what I’m going through.

I’ve heard “medically unexplained symptoms” more times than I can count—and every time, no matter how gently it’s said, it feels like I’m being dismissed. Like I’m too complicated, too messy, too inconvenient. Like my pain is a mystery no one wants to solve.

And the thing is, I do have documented conditions: a hypermobile coccyx, Bertolotti’s syndrome, stage 4 endometriosis, scoliosis, and spinal nerve compression that required surgery. These aren’t theoretical. They’re real. They’re in my records and in my body. I understand how central sensitization and the nervous system can amplify pain—but I also know what’s happening to me is not just in my head.

I work, and I fight to keep working, because it gives me structure and identity. But the effort it takes is immense. I use pain relief sparingly so I can’t be told I’m psychologically dependent on it—if anything, I avoid it unless absolutely necessary. Yet when pain relief is discouraged without alternatives, it feels like I’m being asked to endure without tools or support.

What I want—what so many of us want—is not a cure. It’s a name. Something that says: Yes, you are seen. You are believed. What’s happening to you is real. A name opens doors. A name brings access. A name brings peace.

If you’ve ever felt dismissed or invisible because your symptoms didn’t come with a neat label, I want you to know—you’re not alone. I see you. And I’d love to hear from others who are walking this same uncertain, exhausting road.

Thank you for reading.