In my case, the first indication that something was wrong happened when I was pregnant with my daughter, who is now six. It was really strange, because I developed geographic tongue during my second trimester -- as well as the very sensitive, deep fissures that often accompany that condition. But I just chalked it up to being pregnant, because being pregnant is weird enough in itself.
Not only did it not get better, but it persisted, and then other stuff started kicking in. I had a rash on my face, I was experiencing severe fatigue. I just kept getting slammed with all of these aliments. By the time my daughter was a toddler, I was having trouble with my hands -- I could not grip things, my fingers and my wrists hurt. With a small child in the house, this sort of debility is, of course, incredibly frustrating on top of being terribly painful. After a few more years of things getting progressively worse in my shoulders and all of my joints, and having trouble sleeping and enduring the physical and mental problems associated with that, I was finally diagnosed with RA.
Quite honestly, I don't have a nice, eloquent way to describe what it was like to go from being an active person with my whole life ahead of me, and a career that I loved as a family nurse practitioner -- I danced when I was younger, I was a rock climber, a kayaker -- to being someone with a sometimes crippling autoimmune disease. What I can say is that it was crappy, mentally and physically. On top of it all, having a preschooler I wanted to be a great mom to -- I mean, I don't want this to sound whiny or anything, but I can think of few things that are more challenging than that, when you just can't do what you want and need to do, and no matter how much you will yourself, your body just doesn't cooperate.
So there's guilt, anger, resentment, grief -- all of these emotions, and they only add to the stress which is so often a trigger, anyway. In fact, there have been plenty of times where the mental aspects trumped the physical aspects. Everybody handles things differently, but I have a hard time imagining a person could go through something like this and not have periods of utter despondency.
Today, for the most part, it's better. My feelings of grief and resentment have lessened. But I would not say that I'm in a good place. I would just say I'm in a better place. Some days are much better than others, and some days it's horrible. In a way, it's like I'm in a state of mourning, because on the worst days it really can feel like my former self died.
There are a few pieces of advice that I might give to anyone receiving a diagnosis of RA -- or any chronic condition. First, care for yourself, psychologically. You cannot care for your body and your physical symptoms if you're not caring for yourself mentally, because feeling depressed, not sleeping -- that makes the physical symptoms worse. Some people go to therapists, some people go to groups, some people take up self-care activities. There's no clear-cut answer as to what anyone should do to care for themselves, only that they should do it.
This is tough for some people to embrace, but you have to question everything, and be your own advocate. Do your own research, and if after a time you simply don't like the doctor you're with, fire him or her and find a different one, if you possibly can. If you're someone who is not comfortable being assertive, take someone with you who is. It could be a parent, a friend, a spouse, a child, a sibling. I have my own challenges with this. I am not confrontational. I don't like to stir the pot. I have to remind myself that the doctor is there for me. I'm not there for the doctor.
Finally, tell your own story. I've found, in recent months, that going back to the very beginning and relating everything -- and I mean everything -- I have been through has been cathartic for me. I encourage other people to do it, too, in a formal setting or just telling it to a friend. I was able to look back and see where I've ended up, and how I got here. I used to think I would never be okay again. But despite everything, I think I am.