From the page: "Things NOT to Say to Someone With Lupus
Thank you to Nicole Dalton for sharing this. I've adapted it for lupus (from my perspective).
Please don't ever say these things to me or anyone with the 100+ serious autoimmune diseases where arthritis is prevalent. And my responses, yes, they're a bit snippy and cranky. But I woke up with my heart and chest hurting from this systemic disease. That's not including the morning stiffness, joint pain and nausea that I have every single day at this time. They're two separate complications that I have and I still have to find some way to make it through the day with a smile even though I really just want to crawl back into bed.
1. Aren窶t you feeling better yet? (No, there is no cure. Even when I say I'm feeling good, it's a matter of perspective. Chances are I'm still running a low-grade fever, joints are sore and I have a headache. My good days are sort of like having the flu every day.)
2. You窶re not old enough to have lupus/arthritis. (Really? I was diagnosed at 26 but had symptoms as young as 17/18 years old.)
3. Oh, I know; me too. (Unless yours is a serious autoimmune disease too. No.)
4. Exercise would really help you feel better. (I have started a regular exercise routine because I know it helps, however not on days I'm in bed and flaring.)
5. You don窶t look swollen, sick, or ______ (I know. Sometimes it's not obvious. They are called Invisible Illnesses for a reason.)
6. Have you tried counseling? (Why, yes, I have. I go weekly, thanks. I consider it my gift to society to keep my shiz together in public.)
7. Maybe you窶re depressed. (Yes, yes I am. Clinically. Depression and chronic illness are closely linked. Mine is managed with therapy, a positive attitude, meditation, exercise when I can and a low 20 mg dose of Celexa.)
8. Why do you walk so funny? (Because I am limping in pain from a very swollen and flaring joint or extreme muscle pain.)
9. No, it窶s not heavy. Here, hold this. (Please don't ever do this. Some days, it hurts to hold my coffee mug.)
10. Have you tried the blue stuff? You窶re feeling achy. / The aches & pains of arthritis. (I've tried many things. Unfortunately, my disease is at a cellular level in my immune system. It needs to be treated with monoclonal antibodies and other chemo-like medications.)
11. Why didn窶t you try glucosamine (or Omega3 or gluten-free窶ｦ) before you tried that medication? (I take those things and am in the process of going gluten-free now. I still NEED the medication, just like a cancer patient needs their chemo.)
12. Just drink this juice. Or eat blueberries... (Thanks, I try all kinds of things and I do love blueberries.)
13. Is that your handicapped parking tag? (Why yes it is! While I work full-time there are aspects of my life where I am disabled from this disease.)
14. You just need to lose some weight. (I understand that being of a normal weight has less impact on my joints. I have lost a lot of weight, thanks, and still working on it.)
15. I窶m glad you窶re better now. (I'm not. I'm just over a flare. The next one is probably around the corner. That's the way lupus works. It's a never ending cycle. There is no cure, yet.)
16. At least it窶s not cancer. It窶s not like it will kill you. (Actually, it can and does. I have had two friends pass away from complications of lupus in the last 4 years. Others who are very very critically ill. THERE IS NO CURE. It does kill.)
17. I read about a woman who cured hers with窶ｦvitamin supplements, antibiotics窶ｦ (Yes, that might be so but are you 100% certain it was something of an autoimmune nature? There is a difference. Besides, I take plenty of vitamins, antibiotics, etc. I also try to eat well and exercise.)
18. You just have a low tolerance to pain. (Actually, I have a very high threshold of pain. Out of the 12+ prescriptions I take, only one is a pain killer, and I only take it at night and only when the pain is completely intolerable (probably once a week). Pain is an individual experience. Some manage it better than others. But, that is not for you to say how another should feel in regards to their pain.)
19. My Grandmother had that. (Unless your Grandmother had Lupus, Rheumatoid Arthritis or another autoimmune arthritis disease, Osteoarthritis is probably what your Grandmother had. While I am sad for your Grandmother, and for her pain and discomfort, it is not the same as my very active disease.)
20. I used Tylenol Arthritis and mine went away. (Your aches and pains from mild arthritis symptoms might have been helped from over-the-counter Tylenol Arthritis. And that is wonderful. However, my disease requires more serious, hardcore medications that I receive by IV infusion on a monthly basis that need to address what is going on at the cellular immune system level.)
If you are still reading this, give me a thumbs up so I know and so it educates all of your friends too. Thank you."