Community Thoughts: What do you want more people to know about RA?
May is arthritis awareness month, it can certainly be helpful when others understand and know more about the condition that is RA. So we asked our Facebook Community:
What do you want more people to know about life with RA?
We are fighters:
- RA requires strength and courage. This is why we describe ourselves as WARRIORS. Everyday is a different battle. We are always in search of the proper med to manage our disease. (that carry horrible side effects) We need support of others. We want people to know that RA is NOT OA. I would love to see more awareness.
- I wish they knew how exhausting fighting myself is all day really is.
- Everyday is a battle, a battle we keep to ourselves & try to fight on our own.
- To understand that we hide the pain and fatigue everyday….We have very bad days frequently and that just because we don’t look sick that does not mean we aren’t suffering everyday we have a battle.
- I want people to know you really don’t know how strong your are until you get this.
- I just want people to realize we are in pain everyday and we fight till the end to have a quality of life.
It is invisible:
- That you cannot visibly tell that I’m sick, even though I may be in a lot of pain and feel dead tired. That I look like everybody else, so if I’m asking for help or a little special treatment it doesn’t mean I’m lazy or lying. That RA is sneaky and hits you unexpectedly. It’s not just my joints. And not only on rain or snowy days.
- Don’t judge I may look fine on the outside, on the inside I am not.
- That just because I still look the same does not mean I’m myself anymore.
- I want people to know that I have to fight everyday to do things I used to do.
- I wish people could just understand that although you can’t always see the pain, it is very real and at times very intense. And when I say I’m tired, I’m not tired like a normal person, I’m actually suffering from exhaustion.
- That no matter how I look, I probably feel like crap and just because I had a reasonable day yesterday doesn’t mean today will be good too. Also, no matter how much “clean” food I eat or whatever supplements I take. It won’t “cure” me.
More awareness, education and understanding:
- That people that have family or friends with this horrible disease should read and learn more about it. That would a good start. I know that even then they truly won’t understand it. I have it and I don’t understand it!
- How much we suffer through the smiles. How hard it is to do what most people take for granted. That RA hurts everywhere not just your occasional pain in a joint but all of them and most of the time more than one at a time. How much we wish we didn’t have this and could go and do like normal people. We wish people understood the immense pain this causes and there’s nothing that can be done for some of us.
- I just wish my family would understand more. They always question why I rest so much. And my fatigue is so bad at times every little thing makes me cry.
- I want people to know and to educate themselves about us RD WARRIORS.
- I would want more awareness,throughout the Nation, that it is not an obvious disease. While I have talon-like hands, most of my body does not show the signs of the disease.
- I wish people would be aware and would understand it’s not just arthritis, it’s so much more debilitating than that on the outside and on the organs.
- I wish people would learn more about it here in RSA. The weird looks people think you are faking it.
- I wish people would have a better understanding of this disease and realize that just taking fish oil or other oil based supplements that regular OA patients take isn't going to fix the solution…. And it never will. People always tell me oh, try rubbing cream on your hands, take fish oil daily or some other lotion or potion- helps my grandma who has arthritis. It’s not the same people!
- I would still be working if I could. I want the government to know I am not on my 3rd try for disability for no reason.
I want people to understand that joint pain is only one small part of this disease. - The truth please and and understanding of what we go through everyday!
RA is a disease:
- Rheumatoid is a disease
- That it’s not arthritis!! It’s an autoimmune disease.
- It’s an autoimmune disease that affects way more than just a few joints when it rains!
- I am wishing that people would stop minimizing Rheumatoid Disease by referring to it as merely rheumatoid arthritis. It is sooooo much more! It causes not only chronic pain and fatigue as one’s own immune system attacks its own health body, but puts major organs such as heart and lungs at risk as well as causing inflammation in the brain causing depression, mental impairment and anxiety disorders.
- If I have to cancel plans at the last minute, it’s because I’m having a very bad day. It means that I have pain and fatigue that makes it an effort to just be. That this is a disease that had no cure, but the cost of drugs that keep it bearable is prohibitive for many people. It affects not just joints, but also major organs; heart, lungs, kidneys. SO yes, it’s terminal.
RA and OA are different:
- That OA and RA are different.
- I started calling it RD instead of RA. People hear arthritis and automatically assume it’s osteoarthritis. It’s definitely not the same. I wish more people would understand that.
- That it’s not OA as so many people assume it’s the same thing.
Everyday is a battle, a battle we keep to ourselves & try to fight on our own….. It’s nice once in awhile for someone to look in your eyes & just know you’re having a bad day. - I want people to know this isn’t your typical arthritis.
- That is won’t get better, however many copper bracelets I wear or foods to avoid. That even then I’m apparently well probably at least one bit of me hurts and I’m feeling knackered.
How it affects my body:
- This disease impacts the entire body. It is like living with a terrorist inside you. You never know what will get attacked next. Hug gently and share hands very gently. It isn’t the same as osteoarthritis. Do not come near me if you are sick. The simplest cold can turn deadly. Daily pain is a “normal.”
How it changed my life:
- It has completely changed my life. I’m so tired all the time. I’ve lost so much because of this disease. When I ask for help it’s not because I am lazy or taking advantage of anyone it’s because it’s so painful to do it myself and I’m just exhausted and at the end of myrope. Sometimes I hide my pain behind smiles and laughs. I try to be upbeat but sometimes fail. Or something like that…...is that I’d say…. Haha!
An all around what we want others to know:
- Don’t underestimate what I can do!
- I’m not lazy. Some days it’s just harder to get things done.
- That I do all that I can to have a normal life.
- Medication isn’t always the answer!
- I wish it never existed.
- Don’t judge me. Be patient with me when I’m in an RA fog and don’t respond quickly or I say the wrong thing. Don’t act as if I’m non-existent because I move slowly. What you don’t know is that I need knee replacements at 35 years old. My body aches so badly that I can’t get out of bed some days. If I’m flushed and sweating it’s usually because I'm in pain or on steroids for a flare.
- It sucks…. I hate living like this.
- Being diagnosed with RA isn’t the end of the world. Many people who have RA are still able to work and do other activities, only we have to do them at a slower pace.
- It is an ‘everyday’ disease that hurts me on a daily basis.
- To have hope… that there are are always new medications coming out, that there is always research being done, that there are many people going through the same thing that you are that they can be good to talk to and to bounce ideas off, and that, although it may be a big part of your life, it is not your entire life, smile emoticon.
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