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How do you talk to someone with POTS about POTS?

Postural Orthostatic Tachycardia Syndrome is not just a mouthful, it’s a very serious blood circulation disorder that makes every aspect of life something that has to be analyzed for safety.

I have POTS myself as a comorbid symptom with my Ehlers-Danlos Syndrome, Type 3. Explaining it to other cannot only be incredibly complicated and frustrating.

My symptoms are all invisible (racing heart, feeling sporadically unspeakably dizzy, heart palpitations, general feeling of weakness, etc.), so in many ways, I find myself just putting up with it rather than advocating for my own needs or even attempting to explain it to others.

That being said, most of the individuals I have bothered to open up my experiences with have a hard time understanding.

On the flip side, I’m sure they struggle with how best to ask about my chronic illness while also being respectful and understanding.

How do you talk about POTS—whether you have it or have someone in your life who has it?

Your responses might be utilized in a story about POTS here on The Mighty!
#POTS #eds3 #ChronicPain #ChronicIllness


Pain relievers for fingers?

Recently ive been having pain in my index knuckle, and when i try to use the hand with the sore knuckle it seems like i can't, it just causes more pain. The painevetually goes away but the durations last from a quick second to an hour. #EDS #EhlersDanlos #eds3


So Nervous...

I have to travel halfway across the country to Texas to family who know barely anything about my diagnosis. My mom will start talking about it, or a symptom will flare up and its going to be so embarrassing. And not to mention, I have to tell my mom if I'm not feeling good in front of people, cause itll be weird if I pull her aside... Maybe events will distract my mind.., its just the thought of humiliation and pity that scare me...
#1040pmthoughts #eds3 #EhlersDanlosSyndrome


EDSers, do people pity you and do you like it?

I tell people about it and they pity me. But if i don't tell people I get tired easily and they call me lazy, or unsporty, or unfit. Im not the fastest runner either, but I can sprint, and swim (swimming=good for joints, btw). If I tell them, they pity me by walking with me, getting me water in the heat, or staying behind with me, or totally just give off an uneasy vibe.
Recently, i was talking with my friends and one has Wolf's-Parkinson's-whites disease and the other has stomach acid with a ph of 5. So we get each other and theres no weird vibes or pity. #eds3 #HEDS


Three things I'm grateful for...

1) My #truefriends ; who do everything they can to #understand what I'm faced with and continue to be #Accepting and #supportive .

2) Having my own #home , where I #feelsafe ; it's warm, calm and #comfortable , I can receive my daily #HomeCare with confidence, and live in the catchment area for an awesome #carecompany . All the standard services are reliable, there's decent internet here and my abusers have nooo idea where I am!

3) That I'm still able to be #creative from time to time; even with #multiplechronicillnesses that leave me mostly #housebound #Disabled , it gives me something to look forward to, knowing that as long as I continue to listen to my body, I can do what I enjoy most when I'm able to.

#52SmallThings #3thingsimgratefulfor #myalgicencephalopathy #ME #pwme #HEDS #restlesslimbsyndrome #Migraines #Fibromyalgia #FibroFog #BrainFog #Tinnitus #ehlersdanlossyndromev3 #POTS #eds3 #CPTSD #PTSD #MillionsMissing #Potsie #Zebra #Spoonie #theunchargables #InvisibleIllness #invisibledisabilities #thedruidessofmidian #thespooniedruidess #disabledmodel #creativemodel #altmodel #spooniemodel #DomesticAbuseSurvivor #rapesurvivor #domesticviolencesurvivor #escapedtoxicfamily