10 Things I've Learned in a Decade of Rheumatoid Disease
Wow. It’s been a whole decade. Ten years ago on this day, I was formally diagnosed with rheumatoid disease. After four long years of searching for answers, we finally had a diagnosis. When the xrays were suspicious for RA, I was in to see a specialist, started on some really intense medications, and watched my world as I’d known it start to unravel. “Upside-down” doesn’t come close to describing what was about to happen to life as I knew it.
Now, 10 years later, I’ve learned an awful lot. Things about myself, things about living with chronic illness, how to be more sympathetic to others who are struggling. God has given me a heart for families with disabilities and birthed a new ministry focus out of it.
I thought it would be kinda neat to share 10 things I’ve learned in this decade of rheumatoid disease. As of the date of this post, I’ve been diagnosed with RA, Sjogren’s, ulcerative colitis, inflammatory bowel disease, dysautonomia, and am currently going through a workup for MS. I’ve used a cane and walker for a few years now, but a wheelchair was added this year and I love the mobility that assistive devices can bring. It’s definitely been quite the roadtrip where health is concerned.
But you know, I’m happy. Content. There is joy on my journey. I’ve met some really nice people and been able to help a few along the way. I can still play on the piano, and that is a miracle in and of itself. Life is good. I’m a better person. I definitely wouldn’t choose a life of chronic illness, but I wouldn’t change going through it, either (though I’m always praying for healing, if it’s God’s will).
So, here are those 10 things I’ve learned in 10 years of rheumatoid disease:
It's not so much the destination as it is the journey.
So many times, I’ve heard disabled people ask for healing of their bodies, and of course, we all desire that if that’s what’s planned for us. From a faith standpoint, the end result for all of us as Christians will be complete healing. Won’t that be glorious? But for me, over these 10 years, I’ve learned how to be content, no matter the health status. Oh of course, I’d rather not hurt all the time, or pass out from blood pressures that are too low, but honestly – the journey is the point for me. If the good Lord chooses to heal my body, then I’m all for that! But until then, I’m taking this stroll called life one step at the time, and I’m learning so, so much about personal growth, complete trust, eliminating mind and emotional clutter, and more. I finally reached the point where I don’t even care where I’m going, so long as I know I’m not alone.
Others learn compassion when I let them see my weaker side.
This was a hard lesson. I’m stubborn through no fault of my own (I was born this way… 🙂 ) and the best way to get me motivated is to challenge me that I can’t do something. But really, this is kind of rooted in pride, or maybe a lack of trust. For me, it was inability to trust easily. What I noticed though, was that I was being a little bit dishonest about how I was feeling, what I could do in a day’s time, how bad my pain levels really were. I saw in others around me a lack of sympathy because, quite honestly, I was still showing myself to be as strong as I’d ever been, so in fairness to others, there was no indication that I was struggling. Truth is, no one expected that same ‘ole level of achievement but me. I rob others of the chance to learn empathy when I cover the truth of “I need some help” with the cloak of “I don’t need no stinkin’ help.” What if my kids were ever diagnosed with RA? Would I want them to respond the way I’m responding? For sure, kids will do what they see us do. So all of this has made me a bit more willing to let go of Superwoman and allow others to learn kindness and compassion through the classroom of my illnesses.
Medic alerts are a must.
This is oh-so-simple, but an absolute necessity. My medic alert is full now, I can’t get anything else on there, but trust me when I say – I WANT the medics to know I have a pacemaker. And dysautonomia, etc. I think I can speak for them here, they WANT to know! Be good to those around you. Don’t leave them guessing. Wear the medic alert. Tell your friends and coworkers that you wear one and what it’s for. And though there are some real fancy ones out there, get one that will actually be recognized as a medic alert. It would be sad to know the medics missed it because it looked like some cute leather bracelet with seashells and starfish dangling around.
The journey will require more grit than I ever knew I had.
Where do I even begin… ?? I’ve always been a grit gal. Tenacious. Persistent. Stubborn, even. But I don’t even have words for the grit that a life with chronic illness demands. No matter the diagnosis, some things still must be done. Daily life continues to happen. And just when you think you’re turning a corner health-wise, it all hits the fan again and you’re flat on your back, either at home or in the hospital. And guess what… life continues to happen. It will throw you against a wall, push you into a pit, and trap you underneath the sewer, all in a moment’s notice, and without your permission, or even input for that matter. If you’re new to a chronic journey, grab your boots… take several deep breaths… pray a lot… and then get going. One step at the time. The only step we have to make this very moment is simply the next one.
Some things must go.
With medications, doctor visits, insurance fights, work, family, friends, therapy – and the list goes on – there is precious little brain space for much of anything else. It’s been kind of easy to let go of the hard stuff or stuff that just isn’t working anymore, but I’ve had to let some good things go, too. That’s been really hard. One example is having groups of friends over for Christmas parties or July 4 cookouts. We have a great place for that, and we love visiting with our friends. But for a season, I had to let go of it. I just couldn’t do it, and forcing the family to make it happen just wasn’t working. If our friends miss it much, they haven’t really said so, and letting go of that activity was the right thing to do. Activities, relationships, work commitments… some things will just have to take a backseat or go completely. Truth is, it was time anyway.
Joy is not only possible, it can be my default.
One of the most important things I’ve learned is to tether my joy to something – or Someone – bigger than my circumstances. I’ve heard this advice all my life but it’s really real now. My health is so undependable, and it renders me the same, so if I’m looking to my health, or accomplishments that require good health, as a source of happy and joy, then I’m headed for sad times ahead. But if I’m anchored to something much greater, then not only can joy be possible, it can be my default. And the default for the Christian should be joy, right? We miss that so many times. I missed it for lots of years. Now, when they docs add medications or doctors appointments, or even new diagnoses, I just kind of laugh and say, “okay, let’s do this, God. Not sure what You’re up to now,” and I smile with assurance that He will use it for good. Oh, how liberating this lesson has been! (note: I do roll my eyes a lot, lol)
I hate dealing with insurance and big pharma.
I know I’m not alone here.
The administrative side of sick is a special kind of hard. Fighting with insurance, catching pharmacy errors yet again, and getting stuck with bills that shouldn’t come to you in the first place… it’s a heck of a lot to deal with. And it makes you second-guess yourself on your budget, ability to pay your bills, and especially the opportunity to obtain the needed medical care at any given time. There’s no word to describe the frustration, anger and outright helplessness that accompanies this part of the journey. My heart breaks for patients who don’t know how to navigate this complicated system.
So, I’ve re-joined the patient advocacy side of things and now try to be a voice to teach people how to navigate the system, and to speak up for those who suffer with chronic illnesses. It allows me to think I’m maybe making something positive out of the muddiest part of the journey.
My bucket list has become real.
Chris calls it “mortality motivation” and it is, for sure, a real thing. Now that ambulatory time may be limited to a few more good years, I’ve made a list of things I want to do, and I’m almost fearless to do them! When they were unexpectedly checking for a brain tumor at Vanderbilt, I decided to go skydiving! I wasn’t the least bit afraid, but you should have seen my instructor’s eyes when I told him I had a pacemaker – right as we were jumping out of the plane! It was awesome, I hope to go again sometime.
There is less fear for me these days. Bucket list items become real and things like family time and making memories become so much more important than ever before. There’s an urgency upon things that matter and I have to be careful that I don’t get too intense about this, or I’ll drive those around me complete nuts. Nothing like a chronic illness in the family to bring it all home. Living a fearless life is so freeing. Why don’t we live like this all the time ???
It's really expensive to be this sick.
Rheumatoid disease is quite an emotional thing, but there’s definitely a practical side to being sick. Many times, the practical side of chronic illness is overlooked. From medications, to co-pays and deductibles, to new cookware with handles, special diets, or canes and walkers – it’s a really expensive set of circumstances. This has been a good, hard lesson in doing more with less, simply being happy with less, getting back to the basics. Shouldn’t we do that anyway? It’s made me more compassionate for others who struggle financially with the road of chronic illness, and decisions like “do we eat?” or “do we get meds?” are choices that families really do have to make. I’ve learned the value of speaking up and reaching out. The lesson of humility has been hard. But it makes you softer, more empathetic to others who also struggle on the financial side of the journey.
I'm thankful for my medical team.
So many times, I hear horror stories of patients who don’t trust their physicians, don’t like the nurses, or don’t believe the doctors have their best interests at heart. This is not my experience at all. I’ve been so very blessed to have a team who takes great care of me. They love me and my family, and they want us to win. The good Lord knew that I’d need a team who could put up with me and my cantankerous self, and who would reach down and pull me up when I fall into those deep pits that chronic pain patients everywhere know firsthand. I know how unusual it is for physicians to cry and even pray with their patients, right there in the exam room, and I’m so blessed that I have this. My encouragement to anyone who’s at odds with their caregivers would be to talk honestly, openly and kindly with them. Open dialog and trusting your docs makes a lot of submission and compliance decisions very, very easy.
Chronic illness will take you places that only you and God can go.
This is probably the biggest lesson of all. It’s frightening and yet calming all at the same time. It’s hard to explain and difficult to feel unless you’ve walked it.
I remember being on the operating table to get my pacemaker. There was a sweet nurse who stayed right beside my bed the whole time, and the rest of the OR staff scurrying around getting ready for emergency surgery. Chris had followed behind me in the ambulance, but I was on my own for the actual ride. Once in the CCU, Chris intercepted Mom and Dad who just happened to be on the way up for a visit anyway, and they split up to go get the kids from school. I wanted to see them, and I got 30 precious seconds in the hallway as I was rolled onto the elevator to head to surgery. Then they stayed behind. No one was allowed any further but me and the nurses. No husband. No parents. No friends or pastor. In that moment, on the table in the OR, for a few moments, I was all alone.
There are places where it’s just me and God. Chris would willingly go with me and even shoulder some of the load if he could. My parents and other family would go with me to those places, and even a few dear friends would go if for no other reason, than to hold my hand and dry my tears. But some of these places are meant for just me and God. There isn’t an entrance point for other people. It’s in these places that I grow in my spiritual walk and am tested beyond what I think I can handle. The miracles are found here. Things get real and honest. My assignment is confirmed here. It’s a sacred place, one that I’d not experience were it not for chronic illness. It’s the deep end of life. And it’s a beautiful place of abandon, once you get over the initial jumping in.
I thank God for these times. So many lessons are learned there and so much growth takes place there. Many of you have been in these places too, maybe not through health issues, but other circumstances that thrust you into the deep end where it’s just you and God. There is no other option but to rely on the good Lord to sustain us. For this reason, RA has been a blessing in my life. It took me a while to be able to say that, and I wouldn’t choose it, but I wouldn’t change it, either. I wholeheartedly believe that God has and will continue to use this for my good and His glory.
Most times, I can hardly believe it’s been 10 years already. Other times, it seems like an eternity and the weeks pass awful slow. This decade has seen many tears and lots of laughter, too. Sometimes, you just have to shake your head and giggle a bit. Whatever journey life has you on, there are lessons along the way, and joy found in the steps you must take. Hopefully these 10 lessons can help in some small way, whether realigning perspectives, re-setting defaults, or just knowing that you’re not alone on your walk.