Ever wonder what life is like for those living chronic and invisible diseases?
To shed light on this issue, CreakyJoints created a 24-hour twitter event where members of the arthritis and chronic disease community shared aspects of their life that the average person might not know. A wide range of experiences where shared including: hiding pain, the societal expectation to have kids, and fear of disease progression.
We listened with an open heart and honored the stories of those who choose to share their #CreakyTruth.
Some #CreakyTruths that our community shared:
A small infection for most is a big deal for me. When people say they have a cold, it makes me want to run so I don’t get pneumonia #CreakyTruth –@LawrPhil
I don’t know what it feels like to have no pain. This is my #CreakyTruth – @BeingCharisBlog
I’ve learned to never compare my #RA w/ others. Everyone is different, RA can be mild/moderate/severe, everyone responds to treatments differently- it is not a one size fits all disease. One similarity is we are all courageous warriors! #rheum #CreakyTruth –@TerezHumphrey
My #CreakyTruth: I’m tired of other patients saying things like “it must be nice you can still…” when they can’t imagine the other things my arthritis has taken from me. –@sixhips
My #CreakyTruth: Just because I don’t “look sick” doesn’t mean I’m not sick. It just means I choose to focus my energy on making myself look like everyone else. –@RedCurlyHead
I know I’m judged by friends and family for not being able to do more. I’m exhausted, I’m in pain, and I lack strength every day. Some days all I can do is lay down. I hate this! I want to be able to do more. But, often I can’t. #CreakyTruth –@JediMaster941
My #CreakyTruth? Even if I’m not stiff and in pain, I rarely feel “well.” I have about 3 good hours in me per day in which to be productive. Not much to work with. #RA #ChronicIllness –@ReeseTowery
#CreakyTruth: Everything I do must be meticulously calculated bc it all has a price. I only have so much energy, cognition, emotion, and attention to give. So, I weigh all activities on a scale – cost vs value/return. It is done daily – when I wake up. So, plans must be flexible. – @UnxpctdAdvocate
My #CreakyTruth: #rheum has meant adjusting my expectations for every facet of my life. I live life at a slower pace. Sometimes I like that it forces me to enjoy the little things + smallest of victories. Sometimes it’s infuriating. Sometimes both, all at once. #chroniclife –@chroniccurve
I may appear fine, but actually, I’m fighting invisible illnesses; and as a result, take immunosuppressant treatments which increase my susceptibility to infection. A simple cold can really take hold of me. That has been evident in the last 5 weeks! #CreakyTruth –@SimonRStones
I can’t just grab my keys & purse and leave the house. I have to prepare for everything, like I am taking a mini trip. I will suddenly hit a wall, with no warning, that makes it hard to go on no matter if I’m gone for 10 minutes or a few days. #CreakyTruth –@life0fpain
My #CreakyTruth is that working full time, squeezing in some advocacy work while also being a mom to 2 teens, leaves me absolutely exhausted on the weekends. I spend most of my time laying down. I miss having energy, hobbies, having fun.#rheum#ra#rheumatoidarthritis – @mollyschreiber
My #CreakyTruth is the internal battle I fight every day trying to do too much but feeling like it’s still never enough because I used to be able to do more. – @buttahflyk
My #CreakyTruth is that I have an exceptional rheumatologist who treats me as a full partner in my care & advocates like hell for me. I am grateful not just for WHAT she does, but HOW she does it. –@tatterededge
My #CreakyTruth is worry about the future with damaged joints. I haven’t been able to open a milk carton or pick up a frozen turkey for years now. –@anetto
My #CreakyTruth is being disgusted with myself because I can’t perform like everyone else. I overdo things for fear of looking weak and incapable. – @lov3jonez
#CreakyTruth is an important thread to read. I don’t have an #invisibleillness but we all know people who do. – @msstaceyerin
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