Join the Conversation on
34 people
0 stories
4 posts
Explore Our Newsletters
What's New in

"Invisible" #Lupus #RheumatoidArthritis #FamilyDoesntGetIt

Sometimes, what's more painful than anything, more painful than the autoimmune and inflammation, exhaustion and taking care of life through it all, is my family, primarily my parents, not getting it. They don't understand the pain, the need for so much rest, the fact that I can't work, the fact that I'm on disability, Medicare, Medicaid, foodstamps. They don't get why I can't stay in the sitting position for long.... that I must lay down, that I'm on meds, that I need a provider. The one person who somewhat understood part of my nightmare is the person who has been kidnapped by dementia. My grandmother has lived with inflammation and fibromyalgia for many years so she knew... but now I've lost her. So now I'm left with two people who are supposed to love me, especially through this kind of hell, but they are ice cold with no care.... no concern. I am blessed though to have an amazing son who loves me and takes care of me through this... and I have Jesus Christ! For that....I know that I am blessed. #GodisGood



So I’m working on being more comfortable being myself now that I moved home. I’ve heard that my family members thinks that being off at school has changed me... little do they know this is the person who I wanted to be all along. I spent so much time trying to be the person they wanted me to be for far too long. Now they treat me like a stranger. I am still me just me being who I want to be. Being back in a toxic environment makes it hard for me to heal from it bc it’s always something that comes back to remind me I’m still hurting. It’s a struggle and I’m constantly trying to escape. I don’t want to just escape. I just want to move on. #Depression #healingisnotlinear #toxicparents #FamilyDoesntGetIt

1 comment

Holiday Road Trip Anxiety

I’m trying not to, but stressing hard over a road trip my husband has insisted on taking. For the days before Thanksgiving we’re driving from Texas to Ohio to see his family. Last year, they drove & I flew, but no $$ for that now.😢 How in the world am I gonna survive that ONE DAY drive up w/my 3 grown men?? Thenafter only 3 days we return in ONE DAY the day before Thanksgiving...a 5 day trip total😳. I read the article (thnx Mighty!), but still having anxiety.
#Fibromyalgia #FamilyDoesntGetIt
#RoadTrip #Holidaystress #RheumatoidArthritis


How do I explain? #FeelingLow #whatdoyoudo

How do I explain that my body often fails me and I’m embarrassed by it? How do I explain that one second I’m fine and the next my world has flipped upside down and I can’t quite stand up straight? How do I explain that I didn’t want to cut all of those things from my diet or lose 40 pounds? How do I explain that I would love to eat three times a day but two meals is already pushing it most days? How do I explain that I don’t want to leave early but if I don’t leave now I might get stuck here? How do I explain that I know my symptoms are inconvenient for you? How do I explain that sometimes all I feel is pain and other times I can’t feel anything at all? How do I explain that I am always in fear that I might pass out or lose control of my legs in the middle of a crowd or at work? How do I explain that I am constantly exhausted and sometimes it’s all I can do to keep my eyes open? How do I explain that I may look drunk to you but I actually haven’t had alcohol in two years because I know my body will reject it for days? How do I explain that I want to be an independent 24 year old but I am so thankful for that extra set of hands on the days that I can’t lift my arms? How do I explain the shame I feel when someone has to help me shower? How do I explain how much love I have for the man that has stood beside me and held my hand through this journey? How do I explain the amount of guilt I also have for putting him through it? How do I explain that there is so much more going on than what you see or what I can tell you? How do I explain that I’ve seen 17 doctors in a year and half and still have no answers on how to fix this? How do I explain that I’m so sick of being sick? How do I explain that I don’t want your pity but would appreciate some understanding or support? How do I explain that I’m tired of explaining? #LivingWithPOTS #ButYouDontLookSick #ReadyForMoreAnswers #FamilyDoesntGetIt