But you dont look ill | Arthritis Information

But you dont look ill

My pain can travel from joint to joint from day to day or in fact, hour to hour.
The medicines I take may have nasty side effects. I know this. I don't need reminders of this from someone who doesn't live in my body and feel my pain. I don't enjoy taking the medications but I have a disease that needs to be medicated.

Standing, sitting, walking, and laying can all be painful. Life is unfortunately painful. I have pain, swelling, limited energy, joints that don't move right and other symptoms. Sometimes, I'm grumpy because of this. I try not to be but sometimes it comes out despite my attempts to be happy and nice. In addition to the pain and other symptoms, I may be feverish, feel tired, or even have joints that don't look "normal". This is all due to RA.

If you've ever broken a bone, think of that pain and magnify it. Then imagine all over your body. That's how I feel at times.

Don't assume when you hear the word "arthritis" that I mean osteoarthritis, which is what most people think of when hearing arthritis. Most people associate the word with the wear and tear arthritis of aging. I may have OA as well which is that very type. But, I have rheumatoid arthritis, which is an auto-immune disease that causes my body to attack itself. I'm not too young for either. Infants get RA as well as adults. Unfortunately, OA is not just a disease on its own; it can come as a secondary disease to RA. So, I'm not too young for arthritis, please don't tell me I am. And if you still think I am, well, my body and doctors say different so I'm going to listen to them, not you.

I may need to rest more often than most people. It's not that I'm lazy. It's that RA causes fatigue. And that fatigue can come and go or be persistent. Imagine having the flu all of the time.

I may not have "just" RA. There are many other diseases that can go along with it. Those diseases also take their toll on me with symptoms, medications and problems.

I don't enjoy turning down certain activities due to my RA. I may not always turn that down; it is just that particular time may be a bad time for me. Don't assume I'll always turn things down and stop asking me. That makes me feel so left out. But also if I do say no, don't try to make me feel guilty. And if I say yes, but have to change my mind later, please don't be angry. I don't like doing that but sometimes despite my best planning; I just can't make my body cooperate.

There are things I can do that I also enjoy doing that may look like a struggle to you. Please don't try to "protect" me by taking things from me or stopping me from doing something. If I'm doing something and not asking for help, it is because I am ok doing that. I'll likely ask for help if I need it. But also know that I may be too proud or stubborn to ask for help too. If you wish to help, don't just take over. Ask if you can help. If I say yes, ask what the best way to help me will be. If I say no please don't be offended, it is likely something that I may struggle with but gives me pleasure to do. (This doesn't apply to spouses and friends who have known you for long enough to have worked out non-verbal clues of needing help.)

Good email.... These 'letters' are often a good way to help you articulate how you live with your illness. Personalize it and keep it handy if you need to tell someone exactly how you feel. Most people do not understand that despite our best efforts we may not be the same as everyone else. It's real easy for people to forget that we live with a life long illness. RA has so many ups and downs that it's so hard for people to remember that despite apperances we aren't cured......no matter what we may have felt like last week.

Sometimes my family get go excited when I'm doing well.....and then seem so disappointed when I have a set back. I sort of feel like I've let them down at times. I will admit I'm luckier than most....my husband is extrememly supportive and understands the ups and downs better than so many other's.

Wow, this letter articulates ver ywell what everyone who 'doesn't' have RA needs to understand! I bet we've all needed others in our lives to hear this, more than once!

Thanks for sharing it!