This was posted in a group I’m on on facebook. I went hunting and found it here as well (and found out that it can be shared with attribution)
What RA Is Like: A Letter For Family and Friends
Written by Wayney
30 December 2007
It is possible to walk to the park one day and be unable to do so another day. The reverse is also true. Some days just moving around the house is hard enough.
Some days I need splints, a cane, ACE wraps, or even a wheelchair. Other days I don’t. Just because I don’t always need those helps, doesn’t mean I’m faking it.
My pain can travel from joint to joint from day to day or in fact, hour to hour.
I sometimes need a handicapped spot. I don’t like it. But, I need it. I may look healthy enough that I don’t need it but walking out of the store, I will likely be having problems walking.
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.
Don’t lecture me about the addictive nature of pain medications. I know the risks. And don’t judge me for using pain medications. It doesn’t mean I am weak. It means I have pain. If it is a choice between pain medicines allowing me to live a more normal life and not taking them out of fear, I choose having a more normal life.
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.
Please don’t suggest “cures”. RA has no cure (at least now). So, I have it, it is incurable. Live with it…I do. I trust my doctor and the treatment plan we’ve worked out between us, so please don’t try to convince me you know a person who “cured” themselves with diet, supplements etc. It may have helped them or it may not have. It could just be the cyclical nature of RA that fools them into thinking they’ve been “cured”.
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.
When I travel with you, please understand that for my health, I may need to have frequent stretch breaks. I’m not doing it to slow our trip down. I don’t take joy in having a hard time getting moving after sitting for awhile. Don’t hassle me over it.
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.)
Just because I look healthy, doesn’t mean I am. RA is in many ways an invisible illness. Normally, it takes many years for the effects of RA to be seen visually. Even those who have had RA for many years may look healthy.
Please do not think it is funny to force me to shake hands and then use a crushing grip. It’s not funny and it’s quite painful to be honest. Also please don’t assume because I don’t shake hands that I’m a snob or anything other assumption. It’s just quite painful, even if my hands look normal.
Please keep in mind that as frustrating as it is for you to deal with my RA, it is more so for me. RA typically means some losses for me, whether it is activities I enjoy, my job, my ability to do some of the things I found simple before. To me it may seem like I’ve lost my identity. Typically, people with chronic diseases, especially the newly diagnosed, go through the five stages of grief. Even those who have had RA a long time may go through the stages many times after their initial acceptance of RA.
Do not assume I’m “just depressed”. Depression does go hand in hand with chronic diseases whether due to the unrelenting pain or stress or any other number of reasons. I don’t need to “get out more” and expect it to make me always feel better. Sometimes that itself can lead to depression if I am facing that I can’t do as much when I go out.
Also please don’t try to convince me that changing my diet will “cure” me. Recall that I said RA is incurable. Changing my diet may help with symptoms but it doesn’t help everyone.
Also, I don’t need to be told I need more exercise. I’d like to be able to exercise more but may not be able to. That is frustrating enough. I don’t need to hear from others that I’m not doing enough.
Please do not tell me that my choice of treatment is invalid because it is not conventional.
Author’s note: This would not have been possible without those of you who suggested ideas. For that, I thank you. If you wish to share this work with others please provide source link and © information.
What RA is Like: A Letter For Family and Friends by Waynette Porter is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.