Happy Sunday everyone! Today is the final day of #RABlogWeek and I’m getting ready to head off to church. I hope you are too. Today I’m choosing to use one of the wildcards available this week. I get to choose my own topic so hold onto your hats, it is going to be exciting. And by exciting I mean have lots of advice for the newly diagnosed.
I have lived with Rheumatoid Arthritis for almost 30 years. I grew up with it. I have almost no memories of life without it. So that totally qualifies me to give some advice.
Advice tidbit #1: Give up on the definition of normal that you used to know.
I don’t mean to give up on your pre-RA life. And I don’t mean to throw away all the things that made that life awesome. Remember it. Treasure it. But don’t tear yourself up trying to get back to that old life. Once RA comes into your life, that old life is gone. You might still be able to hold onto parts of it. You might even get it all back for a short space of time. But with RA in your life, you’re going to have to accept that the old, pain-free, high energy person that you once were is not who you have become.
Advice tidbit #1a: Don’t allow letting go of your pre-RA life destroy you.
Don’t be a dweller. If you spend all your time focused on what you can’t do anymore, you’ll sink yourself. It is that simple. It took me a long time to realize that. I was angry and bitter and depressed for far too long. Now I look at my past life and I’m thankful for it. And I look at my RA life, that is constantly changing, and I embrace it. I get to reinvent my life every time RA takes a step forward. I try to make it fun each time I do it. I miss the things that I’ve let go, but I am excited to see what new things I’ll discover with each reinvention.
Advice tidbit #2: Get support.
Your friends and family, no matter how awesome they are, will not be able to understand your RA life. Some will try and come so close. Others won’t even bother. When you have RA you need the support and understanding folks who get it. Find a support group. There are tons of options online. Don’t be afraid to flit from group to group until you find your tribe. You will find them, trust me. And you’ll be grateful for them. Because you’ll connect to veterans who’ve been fighting for years. And newbies looking for advice. And folks in all different stages of their RA fight. And they’ll give you a level of understanding and support that someone outside of this RA world can never give you.
Advice tidbit #3: Be your own advocate.
Your doctor will do his or her best to take care of you. But it is your job to educate yourself about your illness. Research. Read about drug therapies. Alternative therapies. Exercises. Supplements. Know as much as possible about what is going on with your health. It will save your butt. You have to be willing to speak up and disagree with your doctor. They’re great and they try hard but they see you for a few minutes each appointment. You have to be ready to stick up for yourself if your gut says their approach is wrong. Don’t be afraid to fire your doctor to. I did after the injection suggestion. And I found a rheumy that has been a godsend.
Advice tidbit #4: Be honest about being sick.
People can’t help you or understand your illness if you hide it. But be careful, being honest can backfire on you. I have been lucky. Once I decided to be open about having RA, things went well each time I told someone. There is a huge stigma attached to invisible illnesses. It can’t be fixed if those of us who have them are silent. Each person I meet, each person I tell about my illness – that is one more person who won’t judge the seemingly well person in the wheelchair or parking in the handicap spot. I’ve had bad RA days where making it work was a miracle. On those days I’ve been honest about why I wasn’t leaving my office. One on of those days the head of our company called me, asking me to come up to his second floor office to help him with something. I told him that stairs were out for me today, that my RA was active and attacking my knees. It hurt too much, I explained, to walk up that single flight of stairs. He was down in my office minutes later. And even asked several times that day if I needed anything. I think he was so understanding because I’d explained my illness to him in the past. There needs to be more education about RA and other invisible illnesses. Who better to teach people than us?
Advice tidbit #5: Laugh. And pray.
Find the good in this life. It’s going to suck. It’s going to be hard. You’ll cry. Probably a lot. You’ll hurt. Probably most of the time. Learn to see the humor. Make jokes about it. My weather predicting right knee has become a joke in my circle of friends. I have two friends who, thanks to accidents, have metal holding various bones together. Together we’ve formed The Broken Bodies Weather Forecasters. We’re more accurate than our local weathermen. Friends tag us on Facebook looking for forecasts, especially in winter when our bodies are most insync.
If you’re a believer, pray. In my early 20’s my RA stopped responding to medication. I went about two years in horrible pain. I was finishing my undergrad degree at the time and it was horrible. I was deeply depressed. I was called a hypochondriac by people who didn’t understand. That set off a long period of my life where I turned my back on my faith. I was furious with God. I felt that He was punishing me for reasons I couldn’t understand. I felt that He’d stolen my dreams and the life I was meant to have. I eventually found my faith again. And it is stronger now because of that period. I know now that the life I thought I was meant to have wasn’t what He had planned for me. I think He slowed me down with RA to get me to the place I am now. To get me writing. About both RA and about my faith. And now I pray my way through every flare. And I have a peacefulness that makes my RA rollercoaster much easier to ride.
Life with RA is going to be rough. It is a war. Each flare, each medication induced side effect, each bump in the road is a little battle. Right each one. You may not win every time, but keep fighting.
To read all of the #RABlogWeek blogs, go here. Click on the links under each topic to read that day’s blogs.