“Patience, Patience!” they tell me. I guess I haven’t learned those patience skills yet because I keep having to go to school on this.
Anybody relate ???
When a journey in to chronic illness begins, no one prepares you for all that it will entail. Well-meaning friends and family share their stories, their knowledge, and encourage us in good faith, but there’s just nothing to truly prepare us for what lies ahead except to walk the road. Waiting for answers, waiting for appointments, waiting for this test and that scan can all leave us impatient, if not exhausted, discouraged and wondering if the answers will ever make themselves known.
Perhaps the most frustrating step in the whole chronic disease process is the first one – trying to figure out what’s going on. Once we have a name for our disorder, we can treat it. We’ll know something about the course that lies ahead of us. We can somewhat prepare. This is all true, but the diagnosis chapter of chronic illness is wrought with unknowns, yet-discovered’s, and unexplainable delays that have no other description except, “We’re not sure yet.”
How can we endure this long process better? How can we wait patiently and trust our physicians while the only progress we see is an inch here and an inch there, knowing it will take forever to walk the first mile on this chronic journey?
Well, friend – we can find a way to settle our minds, create some space for the process to work, and move towards patience in the uphill battle we are fighting. Here are 5 Secrets to Enduring a Long Diagnosis Process of chronic illness:
Research shows the average diagnosis time can be as much as 3-5 years, and is almost always not less than 6-9 months. Unlike strep or even the flu, there isn’t a quick swab test with a quick answer about the auto-immunes. They are unpredictable and take their time in showing up. In the early stages, pain can easily be attributed to other things that resolve in short order. Only, this pain doesn’t resolve in short order. Just getting to the point where a visit with a rheumatologist might be necessary can take several months or even years while we rule out all the “easier” stuff. Keeping in mind discovering RA or other chronic illness is a many-steps process can go a long way to help us stay patient – and even a bit forgiving – when we don’t have answers on our first visit.
It’s kind of like having a stain on some laundry. We know it’s there, we see it, but we aren’t sure exactly what it is, so aren’t sure what to use to remove it. We try and try different remedies over several weeks but alas, we cannot identify the stain, so we don’t have a solution. On the 10th try, we discover the stain is purple hair dye and the solution is the well-known cup of bleach and a teaspoon of ketchup. We try it and sure enough, the stain comes out of our sweatshirt. It took a while, but we finally figured it out and put a solution in place. Who would have ever thought it was purple hair dye, we don’t even color our hair?
Okay, yes, this is a made-up example, so don’t throw bleach and ketchup on your clothes to get purple dye stains out, lol Perhaps this illustration is a bit far fetched, but you get the idea. The point is, much trial and error likely takes place on the way to identifying a chronic illness diagnosis, particularly the auto-immunes that are complicated and other illnesses that are rare.
One of the craziest examples of this was when, after 6-8 years of fatigue and RA, I began having random, severe upper left GI pain. We tried to find answers and ran test after test for several years, and just couldn’t get a diagnosis. After eating some nachos for lunch at a local restaurant (‘cause… y’know, nachos are delicious and all…), this pain clamped down and I honestly thought I was tearing a colon. Now my friends, if you’ve never had a tear in your GI tract or seen someone endure this, it is a most painful, most urgent situation. As I continued unable to get a good breath from the pain, dropping to my knees and shedding big ‘ole tears, turning white as a ghost, and splinting my left upper quadrant about halfway through to my back, Chris said, “it’s time to head to the ER. Let’s go now while it’s acting up.” I honestly think he was a bit afraid, so off we went. I mean, if you’re immunocompromised anyway, you don’t want the infection risk of a torn GI tract.
By the time we got to the ER and the abdominal CT part, the pain had settled somewhat and it seemed the “episode” was over. So of course, since there was no “colon prep” and the CT naturally showed a GI track full of delicious nachos I’d just eaten (ya’ think ??), the ER doctor gave us his expert diagnosis.
Knowing this was the 4th or 5th workup for the same pain, I pushed back a little and questioned the diagnosis. The doctor listened kindly, then gently let me know everything was fine, I just needed to … maybe I could try to …. well, you know…
That was all they gave me. Well, that and a $2300 bill for the CT. I may be a lot of things, but full of crap isn’t one of them.
Needless to say, some months after this, Sjogren’s presented itself and the rheumatologist had found the missing link: Sjogren’s disease, another auto-immune disorder that brings its own set of GI issues which are elusive and can mimic a whole lot of things. The missing link of Sjogren’s answer a whole lot of questions, but one remains to this day. In a patient with known auto-immune disorders, and continued GI issues for years for which I’d seen multiple doctors and for which there was never a definitive diagnosis, why hadn’t someone somewhere run the blood test for this already ???
I’d love to go back and tell this doctor what the diagnosis really was and ask why he didn’t run this test or look for this, but the point is this – autoimmunes and other chronic illnesses are quite elusive. They just are. They mimic so many other things that can be more easily explained, and pulling out the bazooka for the fly isn’t what the doctors usually do. I can see where this doctor thought I was simply constipated, but in the end this wasn’t the case at all. There was a much bigger issue going on.
Knowing how elusive these disorders can be allows us to give time, space and a little patience for our physicians to figure it all out. The keeper of the gate, our primary care physician, leads the charge of putting all the pieces together and getting us to a diagnosis or to the right specialist for him or her to diagnose these elusive disorders. But it takes a while. We hear answers like, “no” and “not this” or “we’re still not sure but we know it’s not <whatever>” many times over before the real diagnosis is discovered. Gear up for this process. We can be forgiving and patient. After all, we need the docs on our side.
Statistics from the National Arthritis Foundation as well as the American College of Rheumatology show a disturbing trend regarding the lack of enough rheumatologists to serve the national population of auto-immune patients. You can click on these links and read the articles in full, but suffice it to say there is a huge shortage of these specialists and the shortage is getting worse every year. It isn’t unusual to have a wait of 4-6 months or longer for a new patient visit with a Rheumy.
It’s also quite normal that a patient, especially one in a rural area, would have to travel 100 miles or more to the nearest rheumatology clinic. Knowing about this shortage helps us better align our expectations with our actual experience scheduling that first visit. Our initial thought might be one of frustration that the clinic isn’t moving more quickly to help us out, but in reality, most rheumatologists are overload with other patients who are having the same pain crises we are. My Rheumy works long, long hours, and I see evidence of this with lab results posted to the portal over the weekend, and wee hours on a Sunday morning. I know he’s not just sitting around with his finger up his nose, and I suspect that while there might be some bad bananas out there, most rheumatologists are just like mine, overloaded to the max yet pressing on to help their patients.
My hat’s off to their families. Their families will wear a special kind of crown in Heaven.
So my friend, understand the shortage and anticipate long waits for that first visit. I was fortunate to have met my Rheumy during a hospitalization for an RA flare for which we weren’t sure I’d pull through, but I didn’t have a long wait to get in at the clinic. Normal wait times can be 6-9 months or more, so if you get in quickly, say a prayer of thanks and count your blessings.
Ahh… the boiling water pot analogy… Nothing could be truer when it comes to the long, snail-paced diagnostic chapter of chronic illness. There is definitely a “meantime” of waiting. In fact, there are many “meantimes” along this journey, and the more we focus on them, the slower they seem to pass.
Healthy diversions are a great way to pass the time, keep us occupied, and prevent “borrowing trouble” with mind games of all the things that could go wrong at our visit. Activities such as journaling, music/meditation, and exercise or Yoga are also healthy for our mind and body, reducing stress, so it’s a win-win!
I’ve enjoyed learning to journal over the last 18 months and keep my supplies handy for a quick note here and there. It also helps to journal about my frustrations and discouragements along the way.
This allows me to get my feelings out on paper rather than unloading on or even snapping at those around me. Exercise releases all kinds of good vibes and endorphins, and exercising in a small class can help form new friendships, even with others who are going through the same things we are. Symptoms tracking can be a way to journal and is helpful to our physicians when diagnosing our problems. There are tons of how-to videos and phone apps for yoga, meditation, relaxation and the like. I list a few of the resources I use here, most are free and all are easy to download to my phone.
In 2017, my physician took me out of work after 10 long years in to the ongoing journey of chronic RA pain and dysautonomia. The addition of Sjogren’s and its GI problems on top of everything else was simply unbearable and it was just time to throw all our efforts towards getting well. He’d tried to take me out of work multiple times before and I would not comply, and while I questioned it this last time, I trusted his wisdome and gave in.
The first year was a really hard adjustment. The biggest surprise was the loneliness that crept in. Not only was I no longer working, but for a time was so sick that even social dates like lunch with a girl friend or a couple’s dinner out with friends was just not do-able. I enjoyed the quiet most of the time and settled in to enjoying and even craving rest, but if I’m honest – and I’m being really transparent here – it was kind of lonely. For a while friends and former colleagues checked on me and even came to visit. And then they didn’t.
It’s probably safe to say that all Chronies go through some loneliness. Those with invisible illnesses have the added element of “you don’t look sick” and often friends or family don’t understand why we say “no” about getting together when it isn’t easily visible that there’s a problem. Reaching out during the lonely times is really important to guard against isolation, depression and other similar issues. Reaching out could consist of writing a hand-written note or card, making a phone call, or meeting a friend and opening up about the loneliness that’s creeping in. There are some good, legitimate online forums and groups as well. Talking to our doctor about these feelings is important for many reasons, and our care team can help us tap in to resources like support groups, local faith groups, and perhaps even groups at the gym.
I have a different understanding now of chronic illness and its association with depression and isolation. I’ve never been diagnosed with depression, but I’ve been lonely and even sad, and can see how things like isolation and depression can creep in through the back door of our minds before we’re aware that they were even in the parking lot, let alone had parked and were headed inside. Depression is real and there’s no shame in recognizing it, being on guard against its stronghold, and asking our doctors for help. In fact, any good doctor or nurse woujld prefer that we ask for help. Don’t be afraid to reach out.
I hope these 5 tips are helpful and encouraged you today! Hang in there, my Rheumy friends and fellow Chronies, the road is hard, it is long, and there are parts that pass so.very.slowly. We can wait well during the “meantime” of the diagnosis process, using the time in healthy ways. It’s always a good idea to not worry or stress, but conserve energy and brain power where we can. After all, we’re gonna need that energy on down the road.
Blessings for the day. Remember that you are loved and prayed for on each step of this journey laid out for us.
You are loved and thought of often.