8.5.13

Things Not To Say To Someone With RA


1. You don't look sick! Please, tell me how sick looks, maybe we will do better next time.

2. Maybe you should try to exercise and get out more. We would LOVE to get out more, but most days our legs can barely bend, we suffer from extreme fatigue and we feel like death warmed over. We move as much as we can.

3. My grandmother (great aunt or other old person) has arthritis. Osteoarthritis and rheumatoid arthritis are totally different. Osteo is from wear and tear, RA is your immune system attacking itself.

4. You should try this supplement, it's supposed to cure arthritis. (Or this old wives tale/natural treatment/special diet/etc..) First of all there is no cure for RA, second of all it's rude giving medical advice unless someone asks for it! Bu most of all, when people suggest things like this, it always seems to insinuate that what we have isn't serious, and we are dumb for not knowing there is a magic cure-all that will heal us. Believe me, every person I know with RA has researched their diseases very intensely. We've tried that diet. We already take that supplement.

5. Chemo is bad for you. (Or some other RA drug) Really? You don't think we know that? No one wants to take drugs, it's a difficult decision we make every day. It would be wonderful if there were treatments available with no side effects! Sometimes people don't have a choice.

6. You are still sick? Look up the meaning of chronic in the dictionary and try to not ask that again. It gets old really fast.

7. But you are too young to have arthritis! Check your facts before you speak, two-thirds of people with arthritis are under the age of 65! Personally I know more people under 30 with RA than any other age range.

8. It is probably just growing pains. Don't say that. Please don't say that! It's mean and insulting. There is a really big difference between growing pains and the pain we feel. This is pretty insulting.

9. Just take some Aleve. We tried that. Believe me. I really wish it was that easy!

10. It is all in your head, you are being dramatic. You might as well slap them in the face while you are at it if you are going to say this! Show some respect, and realize that there are many invisible illnesses. That doesn't make them any less real. Seeing a therapist isn't going to cure our pain. (Yes it is true, depression can cause some pain, but it isn't severe or chronic. However, RA can often bring on depression, it is a common symptom! Just because we struggle with depression at times doesn't mean our pain is in our head.)

11. But you were fine yesterday! Funny thing this RA, it flips around so fast, one day we might feel great, and the next we are crippled in bed. That is just how it works. Just because we can do something once, doesn't mean we can do it all the time. Also, just because I say "no" to you this time doesn't mean you shouldn't ask me again! I might tell you "hey I'm not able to do that at all" (like ice skating or running) but a lot of times it is just a "I can't do that right now/this time."(like shopping, a movie, girls night or party)

12. Everyone gets tired sometimes. Feeling tired, and having chronic fatigue with suppressed energy levels are really different. When I say I feel tired, I'm serious.

13. At least you don't have cancer. I don't even know why people say this in the first place, but I know it's been said and it's wrong.

14. You should be more positive. Positivity won't make our reality disappear. It helps yes, and we try our best to put a smile on to hide our pain every day. But sometimes, we just don't have the power to be positive anymore.

15. It is just arthritis. Just. Arthritis. Joint pain. Fever. Swelling. Stiffness. Fatigue. Suppressed energy levels. Migraines. Nausea. Depression. Disability. Weight gain. Bruising. Rashes. Insomnia. Muscle ache. Loss of appetite leading to weight loss. A lowered life expectancy. Increased risk of contracting other diseases. RA can attack your organs inflaming your lungs and the area around your heart, damage your vocal chords and eyesight sometimes even causing blindness. It's just arthritis. No biggie.
>>>>>><<<<<<
All that said. I know dozens of people suffering from RA and they are in fact very kind and understanding people. We are all so used to people saying these things, that most likely it isn't going to bother us much, as least outwardly. But the truth is, every time someone says "It's all in your head" or "It's just arthritis!" it really can hurt. This isn't to make you feel bad if you have said one or more of these things to someone with chronic pain, but to educate people on what these sort of expressions and words feel like to us. A lot of times people say "be more positive!" or "you should exercise more!" because they want to be helpful and because they care. We know that! This list was written to help you understand how it really makes us feel inside, and what terms hurt the most!

>>>>>>>>>><<<<<<<<<<
Written by Arielle. "I have had rheumatoid arthritis since I was 16 years old, and not to long after my sister also showed severe symptoms of RA, fibromyalgia and scoliosis, but is still chasing a diagnosis of her own. RA is a huge part of my everyday life, and I am very passionate about spreading awareness! These posts are to encourage those living with RA or other chronic diseases, and to inform those who come in contact with us, of what our life is really like."

4 comments:

  1. Thanks for sharing this insight!

    ReplyDelete
  2. Great post, sis :) I think another thing to add to the list is when people tell you you just need to pray more or become more spiritual. It's a slap in the face. I don't have RA because God is punishing me. I have RA because of many factors, such as genetics and the simple fact that life isn't fair and it can happen to anyone.

    ReplyDelete
  3. Ah! Yes. It's so hard for people on the outside looking in to even begin to understand what those of us with autoimmune, and often hidden diseases go through and live with on a daily basis. I know when people say things like that to me about my type 1 diabetes it makes me wish I could even begin to explain how I don't let it define me but sometimes it does consume me. Ever read The Spoon Theory? It's been perfect to let people read and try to understand just a bit of what it is like living with a chronic disease.

    ReplyDelete
  4. Ah! Yes. It's so hard for people on the outside looking in to even begin to understand what those of us with autoimmune, and often hidden diseases go through and live with on a daily basis. I know when people say things like that to me about my type 1 diabetes it makes me wish I could even begin to explain how I don't let it define me but sometimes it does consume me. Ever read The Spoon Theory? It's been perfect to let people read and try to understand just a bit of what it is like living with a chronic disease.

    ReplyDelete

Hey there! Thank's so much for taking the time to visit my blog. I love hearing feedback from my readers, your comments bring sunshine into my day! Please no anonymous commenters, sign your comment with your name or a nickname so I know who you are! :-) Wishing you a fabulous day, XO, Marie