I do not have the body of a 90 year old. I have an autoimmune disease. Referring to what I go through in terms of age, implying that somehow I am no longer in my early 30’s is ridiculous. RA hits young women more than any other group. And I am young, I have arthritis and it’s a disease, not a wear and tear situation.
- We need help. We are too proud to admit it more often than not. We want so badly to be normal that we often can’t ask people to help us, or won’t, even when we really need it. Offer to help. Even if it seems we don’t need it. When we say no, insist and push us out of the way.
- Visit often. Many of us are isolated. Embarrassed. Or even feel we are a burden when we visit others. Visit. Stop by and say hello. But not unannounced, because I’m an introvert more than I’m in need of visitors
- We will always say “I’m fine,” “It’s fine,” or “things are fine,” when asked how we are or how things are going. It doesn’t mean things are fine. It doesn’t mean we aren’t in pain or that we have made good progress, it simply means that most people don’t want to hear how we are really doing and we don’t want to be any more of a burden than we often feel we are.
- If your spouse has arthritis, help them. Don’t make it seem like a big deal, a huge effort, or a burden. We feel crappy enough as it is without needing to be reminded that basic things in life are things we suddenly need help with.
- Autoimmune arthritis doesn’t always have an answer and/or a quick fix. Yes, we will have this our entire lives. No, we don’t know if or when we might go into remission or how long it will last. Yes, we can develop other issues, no we don’t always know what they are. We often have more unanswered questions than answered ones. I have Seronegative Arthritis, which is a very uncommon/rare form of autoimmune arthritis, so I have even fewer answers than most. Your guess is as good as mine.
- We are in pain. Smiling or not, laughing or not, walking or not, opening jars or not, we are in pain. Some days are worse than others, but we are in pain more often than not, so just assume we are and things will be easier for everyone.
- Yes, we know we’ve put on weight. No, there is really not much we can do about it. If steroids are in the picture, the weight has nothing to do with diet and exercise. Sometimes, the weight has everything to do with diet and exercise because we can’t exercise often and can’t always cook healthy things when we are in pain. Either way, I didn’t just wake up one day 80 pounds heavier and was surprised that I weighed that much.
- On the flip side, yes we know we’ve lost weight. Some of the medications made us feel sick. When we feel sick we don’t eat. We know this and are ok and doing the best we can.
Yes, we have arthritis. Yes, we have an autoimmune disorder, but that’s not the end all, be all of who we are. We are still us. I’m still bratty, snotty and sarcastic. Arthritis hasn’t affected my sense of humor or my bad attitude.
Bonus: Having an autoimmune disorder means our immune system is already not working properly. Treating these disorders often means being put on meds that lower our immune systems. It’s not personal, but we can’t be around you when you are sick, even with a cold. Or we will, but will make you carry hand sanitizer around with you and disinfect all the stuff you touch. I’m sick all the freaking time. And I’m not even around sick people very often. If you are sick, stay home. Visit when you are healthy.