7 Things Those Living With Arthritis Need You To Understand

September 27, 2019

 

 

 

 

 

 

When I asked my communities on facebook Rheumatoid Arthritis Support and Chronic Eileen what they want others to know for World Arthritis Day coming up on October 12th this is what they had to say.

 

 

It doesn't matter what age you are

 

Elisa Faima I was diagnosed with RA at 13 I'm now 42. I try very hard to keep going and don't do a bad job really when I look at it I probably do more physical work than someone half my age. What I would like people to understand is just because I'm smiling and laughing doesn't mean I'm not in pain and I'm suffering. But because I know I have to I manage and carry on.

 

Matracia Windhausen That it’s NOT age specific. I’m 26 years old and I have RA, the anxiety is real, the pain is real, the down for days because I’m too damn tired from the meds and the disease itself is REAL. I hate when someone tells me I’m to young to be in pain or whatever else they come up with. I was taking care of the elderly and I have for 8 years now but had to stop because it was to much on my body. Just want people to understand that even if they can’t feel it or see it, we are all struggling inside, age doesn’t mean we aren’t sick

 

Ragnheather Bonnett The pain and disease is real. I'm a 39 year old mother of two amazing children. I've had RA for 20 years. You have your good days and you have your bad. I have great days when they count which is amazing. I fight and I cry but I work through. Might pay for it for days after but it's worth it.

 

Kim Schultz I'm not too young to have RA.

 

There is no cure

 

Heather Stewart I am not interested in hearing about the anti-inflammatory diet, accupuncture, other alternative treatments, etc., that might have worked for any minor ailment that you have. I know you are trying to be supportive, but your suggestions (which aren't medically-proven) make me feel like I'm not doing the best I can to follow my doctor's orders and makes me feel that you aren't taking the seriousness of my disease to heart. This disease is hard enough to control, don't add those burdens to my plate, too.

 

Deborah Paleczny There is no cure, no miracle cure!

 

Ellen Manson Please don’t tell my if I stop eating wheat, I will be cured.

 

Fatigue is a challenge

 

Josselinne Gonzalez Please be patient with us. We literally have to evaluate every single detail of our day to accommodate the pain.

 

Charlene Ellis My favorite rheumatologist, Jonathan Adelson, best described it to me when first diagnosed..."one day you wake up and you can't do what you did yesterday. Your mind says yes and your body says HELL NO! I describe it as an unexpected life adjustment! My body fighting itself.

 

It does more to our body than just joint pain

 

Cristina Flores that RA is serious not just a simple joint pain. Many thinks that this is just a kind of illness of those ages 50 up. but no I've had it when i was only 25. Now I'm 35 and wants to have a baby but so impossible because of methotrexate.

 

 

Amy Tomaziefski Thomas That we are all people with our own perceptions about our disease; no two experiences are alike. Therefore, arthritis is like a spectrum, having many different types and involves all of us differently. Bottom line: we are all humans and deserve respect.

 

Ashlee Bledsoe It's way more than joint pain, fatigue, brain fog, exhaustion, and joint deterioration. It's the disbelief, anxiety, depression and stress that come with diagnosis that no one understands. Everyone see's a healthy person, meanwhile inside our bodies is a battlefield. Most of the medication we are prescribed to "slow" the progression, makes us feel even worse than the disease.

 

Crystal Hildebrandt Autoimmune means colds, and other “small” illnesses are not small for us

 

Looks can be deceiving

 

Julia Mullen Arthritis is baffling, you look fine but feel like you have the flu.

 

Linda Richards That even though I look good, I'm really not. For one thing you don't always see me when I'm looking bad because I'm home in bed. Just because I'm smiling and acting like I'm feeling good does not mean inside I'm wondering how long it will be before I can go home and go to bed. Just because I try really hard to keep my life normal it does not mean I'm not in pain, exhausted, and close to tears most of the time. Just because I can go somewhere or do something one day it does not mean I can do it the next. This is no reflection on you. I am not rejecting you or your offer, I'm just trying to get through the day.

 

It's unpredictable

 

Jaime Garman It's not even how I feel day-to-day. It's more like hour-to-hour. I could feel great in the morning and in the afternoon I can't move.

 

Mandy O'Beirne I don't want to be this person, but even on the worst days I am reminded of the strength, resilience and determination of the human spirit. Even our worst day is only 24 hours...

 

Lauren Meadows That some days I may feel great, and the next horrific. Don’t judge the state or severity of my illness by my “good” days.

 

Kathy Barte That everything changes sometimes within an hour. We can be tolerating our circumstances then very quickly it changes to where it becomes intolerable. There is no warning, no way to know when or why at times, it just just beyond our control.

 

Liz McVey Somedays are daily best IS sleeping and letting our bodies heal. Otherdays we can actually accomplish things and have a "normal" day.

 

Julie Lauzon Ellis That we can’t always predict a good day or a bad day; we can make plans and have to cancel because of pain or mobility issues. In my case, I don’t always sleep well at night so it makes for a long day. People just don’t seem to understand that we can’t help it. It’s just way this disease works.

 

Julia Sipe Charko It's very hard to live with. Some circumstances need an explanation that I have RA. If I need to tell someone I have RA, the usual response is, I have arthritis too in my hands, knee etc. I don't even try to explain the difference. Also the pain and fatigue is the worst. I wake up tired and try to fight through each day.

 

 

 

We want understanding, compassion and support

 

Yvonne Carrillo Figueroa It's okay to look as if nothing is wrong, but sometimes we'd like to not be criticized when in pain and taking a break.

 

Harvey Sprayberry No one can understand the fatigue. It's always 'everybody gets tired, you just have to push through it and keep going.' They can't seem to understand that's what I'm doing just getting out of bed some days.

 

Josselinne Gonzalez Please be patient with us. We literally have to evaluate every single detail of our day to accommodate the pain.

 

Monika Schneider With me, I don’t want “sympathy “ I just want people to understand!!

 

 

 

 

 

 

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