Recently the Foundation posed a question to the Cure Arthritis community: What’s the most difficult part of dealing with your arthritis? From the physical to the emotional, our supporters gave some valuable insight into the everyday lives of arthritis patients. We’ve compiled some of the highlights of their responses below and ranked the 10 most common responses.
– 1 –
Defined as extreme tiredness, typically resulting from mental or physical exertion or illness.
“People underestimate true fatigue. It impacts every aspect of my life. I’m too afraid to drive more than 10 minutes now. I can barely go out for a couple of hours without needing a nap and I’m reliant on 6 pills a day, specifically designed for my fatigue, just to keep me half way functional. I am constantly exhausted. I can easily sleep for 24+ hours at a time but I’ve slept for 36 before too and even then I’ll still wake up tired. I don’t remember what it’s like to not be exhausted every single minute of every day.”
– Miranda Gerber
“I can deal with the pain – but being exhausted all the time makes fighting the disease that much harder.”
– Abigail Wiernik
– 2 –
Defined as physical suffering or discomfort caused by illness or injury.
“My mind has all these ideas of places it wants to go, activities it would like to do, shoes I would love to wear, etc. and the reality is my body won’t let me do them because of pain. The best metaphor I can give is I feel like I am sometimes chained to the pain…like you’re a prisoner to it. You can’t break free, no matter how hard you try.”
– Lauren Brooke
“There is so much I want to do, but the pain drains me physically and, ultimately, mentally.”
– Robin Selzer Littman
– 3 –
Parenting And Family
Often we forget that we aren’t the only ones dealing with this disease.
“It’s when my kids say things like, “Don’t bother Mom today, her back hurts” or “Mom, do you feel well enough today for us to go to the park?” My kids shouldn’t have to worry about the health of their parent, just about being a kid.”
– Amanda Cardona (@cardona_amanda)
“The heartbreak of not being more a part of my family’s life. Watching them play, laugh, have fun and me sitting, doing nothing. Hearing from my kids that it’s not fair that I can’t play with them. Feels like they’re growing up without me.”
– Cindy Rodriguez (@cindy.r.17)
“Feeling like I’m not doing everything I can for my kids. On the days when the pain is too much, I get so upset thinking I’m not being the mother I should be. They are happy and healthy kids so I know I’m doing everything right, despite my arthritis.”
– Tara Fasulo Laity
– 4 –
How am I supposed to make plans if I don’t know when I will feel well or not?
“The most difficult part is the unpredictability, never knowing when a flare will hit and knock you back. Not knowing how much you can accomplish on any given day. Not knowing if I should go ahead and make those plans even though I don’t know how I’ll feel. It’s so hard to balance a life when I never know if I’ll even be able to show up for it on any given day.”
– Tia Maria (@becominneurotic)
“I feel like once I get used to the new status quo, something new pops up to take me by surprise, so I’m hurled into grieving another loss all over again.”
– Heather Aspell (@haspell)
“The surprises. I quit saying my disease had found the worst part to attack because it felt the need to one up itself every time, creating surprises I did not want. These are not the gifts I asked Santa for at Christmas, please return to sender.”
– Bianca Albone (@captainangrybones)
Patient Quotes To Share
(Click to Enlarge)
– 5 –
As if feeling terrible isn’t enough, I have to worry about other’s perceptions too!
“People are super judgmental about how you got it, treat it, and think about it.”
“Oh, where to begin. Maybe it’s the endless barrage of dirty looks when I park in a handicap spot. Or when I have to use a scooter at Walmart or Target just to get around, but I seem “able-bodied”. Maybe it’s being told that I shouldn’t use MY OWN handicap placard because there is just no way that I’m actually handicapped.”
– Christie Sledge
“Just because it’s invisible doesn’t mean it’s not real. People who don’t understand and judge you are the most difficult part of dealing with my illnesses.”
– Carmen (@lil_ra_warrior)
– 6 –
I try my hardest to be “normal,” but unfortunately there are limitations that are out of my control.
“It kills me when I’m in the gym and there are more lifts as I get older I can’t physically do. Some days I’m ok with it…Other days, I see down the road and I’m doing less and taking more pain medicine to get out of bed. It destroys me a little more every day cause it took my other passion away: Martial Arts/MMA.”
– Todd Norwood (@toctodd)
“The most difficult part for me is never knowing what morning I will wake up to such painful and swollen hands and fingers that I cannot do simple things like wringing out a washcloth, open jars, turn door handles, and a multitude of other things. It may be like this for weeks and weeks, and then I have a morning that it’s not so bad.”
– Karen Bevel
– 7 –
Cancelling Plans/Missing Out
I want to be social and see my friends, but sometimes I just can’t physically do it.
“Outside of the agonizing pain, I think missing out on social events with friends & family over the years. I also had to put some professional interests on hold because of Ankylosing Spondylitis…So, just ‘missing out on life’ in general from 22-25 feels like a setback.”
– Trever Joyeux (@Islandertj)
“Not being able to plan ahead due to asking myself, ‘Will I be in pain that day?’ If not and I go out, will it hit me out there?”
– MaryAnn Powell
– 8 –
How am I supposed to do this forever? We need hope!
“Knowing that for the rest of my LIFE I will have this RA really does a number on me.”
– Ryan Schae Kiehl (@ryanschae)
“The hardest part for me is the fear that I will have to take three shots a week for my entire life.”
– Lilly Wortham
– 9 –
Asking For Help
I want to do it myself, I want to be able, but sometimes that is not possible.
“The hardest part is admitting, to myself and others that I need help…While I would like to continue to ‘do it myself,’ my body simply won’t let me some days, and I must accept that.”
– Maddie P. (@mpgrace17)
“The hardest part for me is learning to slow down, listen to my body and accept that it is okay for me to ask for help.”
– Emma Gilmour (@emezra)
– 10 –
Accepting My New “Normal”
Pain is my new normal, but I don’t want it to be.
“Not being the same strong woman that I use to be!”
– Kristi Martin Frye
“Because you are always in pain, you start thinking it’s normal. It’s not! But it’s sad; we get used to it…”
– Isabel Lanssens (@lanseke)
“Not being able to do what I used to consider normal.”
– Maria Fairfield
Patient Quotes To Share
(Click to Enlarge)
The Foundation would like to extend a special thank you to everyone in the #CureArthritis community who were vulnerable and shared their experience with the community. You are why we continue to fund research to cure arthritis!
You can see all the responses to the question, What’s the most difficult part of dealing with your arthritis? by visiting the original posts on Instagram and/or Facebook.