According to Prevention.com, it can take autoimmune disease sufferers 5 to 10 years to be diagnosed. Here in the US, there are nearly 24 million autoimmune disease patients, as estimated by the NIH. However, if you’re asking the American Autoimmune Related Diseases Association, Inc., that number jumps to 50 million. In contrast, cancer affects about 9 million, and heart disease 22 million.
There’s no question that the rate of increase for autoimmune diseases is out of control. Once considered a western world problem, it’s now a pandemic crisis. And medicine is nowhere near understanding – much less treating – these complex conditions.
Ten years ago, when my own first vague symptoms appeared, the medical community was not as quick to consider autoimmune disease in diagnosis. Oh, it was on the table. But I was 20-something female, weeping that I was always exhausted and couldn’t keep up with my life. My blood test results (and there were many) consistently proved normal. Depression just seemed a more likely explanation. I was told I “just needed to get out more”.
A Word on Doctors
I had great doctors. Really good souls with a desire to help- not write me off as emotional. But who could blame them? All the evidence said I was fine. Not to mention that I had no visible symptoms. As scientists looking for proof, they each concluded the same thing. Sure, I needed help- but not theirs.
I don’t have to tell you that was devastating.
There’s a bright side
With the flood of patients streaming into physician’s offices complaining about vague or seemingly unrelated symptoms, the existence of a very real problem is undeniable. I still read stories from frustrated patients who are told their ills are “in their head”. (The implication here is that these folks are making things up for attention, not dealing with clinical depression, or other, very real, mental illness.) However, the reports of folks getting a diagnosis within just 2 or three years- some even in months- are on the rise. Their doctors recognize the hard-to-pinpoint signs of autoimmunity, and keep working at determining the particular disease.
Yet… two or three years. That’s a long time, friends. That’s too many days spent wondering what the heck is happening to you. Too much time asking if this is what the rest of your life will look like, or if it will only get worse. Too many sleepless nights wrestling with fear.
In the last decade, I’ve moved across the country and found another wonderful primary care doctor. Thanks to her, I now have a whole posse of specialists in my corner. I’ve since been given several diagnoses- wheat allergy, and Hashimoto’s Thyroiditis, in addition to the Ulcerative Colitis we already knew about. But there is still another autoimmune issue that remains a mystery. It’s the biggest player in my everyday life. And like you, I just want to know what I’m fighting.
Where medicine is at
I’m not the only “difficult case” my doctor attends to in her exam rooms. She sees them all the time. I’ve asked.
She’s told me about the changes that are taking place in these diseases; how they’re morphing. She’s related some of the patterns she and other physicians see among their patients. (For instance, all their autoimmune patients flare near the same time, and those flares subside roughly together as well.) She also shares about new research and theories. She’s open about what the medical community knows, and what it doesn’t. And while I’m very grateful for the insight, the news is a little disheartening.
In one of our recent conversations, she spoke about the lack of diagnostic testing. “How could we have developed tests (for autoimmune disease) when we don’t even know what we’re looking for?” Ouch.
What the medical community thought they understood about autoimmunity only ends up thrown on its head with further research. Those hows and whys remain elusive. Even making sense of basic symptoms is a struggle.
I recently asked my rheumatologist about fatigue. He is honest and kind, making him another great physician to talk with. Like millions of other AD patients, debilitating fatigue- the kind that feels like all life has been sucked out of you- rules my life. I’m at it’s mercy. I wanted to understand why it happens. What causes it? Nearly every AD patient deals with this. Surely, there was an explanation. His response surprised me.
“Honestly? We don’t know. There are theories; lots of theories. And I could tell you all about them. But we don’t really know for sure why.”
Doctors are allies, and they’re frustrated
Doctors are in a tough spot. They truly want to help, to heal. It’s what they’ve dedicated their lives to. Yet, there you sit before them, a blazing inferno of illness, and they have only squirt guns with which to treat you.
Sometime last year, I ran across this eye-opening read– written by a physician. In it, he describes the difficulty of diagnosing and treating patient’s like us. He shares insight on effectively communicating with your physician. And he bears his heart. It’s honest and vulnerable. Please, friend. Please read this.
Our doctors aren’t our enemies. Sure, there are some jerks out there. There are physicians who leave you wondering how they ever made it through medical school. But the vast majority are doing the best they know. They are looking for evidence like they’ve been trained to do. But they are explorers in unmapped territory. And the landscape is changing before their eyes.
If you’ve been told your symptoms are in your head, I’m so sorry. If all of your (many, many) tests come back normal -and everyone tells you you should be happy about that- I understand. It’s maddening. You just want answers, dammit. Whether horrible or harmless- you. Just. Want. Answers.
After the third doctor in a row concluded I had “an emotional problem”, I began to think I really was a nut case. In my teenage years I had been deeply manipulative and deceitful. Lying was second nature to me. Only after destroying precious relationships, did I finally surrender my life completely to Christ. In His profound mercy and indescribable grace, He changed me. He really did. I became different person- from my heart. Real. Honest. And in the years since, He’s continued His healing work on my heart and mind.
So, being told repeatedly that I “had an emotional problem” made me question everything I knew. I had been certain I was no longer manipulating for attention. But what if I was? And what if I didn’t know it? I began to lose trust in myself. I questioned every thought, every word, every action. And you know, I did become depressed. Christ’s joy that once filled my heart, I now viewed as self-deceit. I fell head-first into a deep, dark vortex.
If it weren’t for my parents, I’m sure I would have ended my life. They knew something physical was wrong. They knew the real me- both the teenage me and the changed twenty-something me. And they knew something was making me physically ill. They reassured me I wasn’t a nut-case. They fought for me. They stood by me. Their unwavering confidence was my lifeline during those years.
Here’s the thing
Autoimmune diseases can take years to manifest. You may have unexplained joint pain, fatigue – mild or crippling, or maybe you’re forgetful and a little confused. These symptoms may hang around, or come and go. You may even develop other symptoms. But it could take YEARS to present with enough clues to give a picture of what’s going on with your body. The time it takes for diagnosis is not simply because science has so much to figure out. It’s also due to the sneaky come-and-go way these diseases present themselves.
Take heart, take account
•Friend, if you’re the patient, it’s not in your head.
•If it’s your loved-one who’s ill, encourage them.
•Look for proof, if only for your own sanity, of who you “really are”. Does the “real you” love to work in your garden, but recently find yourself too tired to care? Is the “real you” quick-witted, but now you’re struggling to put sentences together? Maybe you are known for being a hard-worker. Yet lately, you struggle just to show up for your job, much less do it well.
•Think, friend. Ask others. Write it down if you have to. But don’t let yourself forget who you really are, who you’ve been. This is your weapon against thinking you’re crazy. Because you’re not.
Holding onto a sense of who you are is only a start. You’ll need to track your symptoms, as well. Logging your health is a must even after you’ve been diagnosed. A record of your symptoms will give you clues to the big picture. You may even discover some of what your “triggers” are. You might notice when your flare-ups tend to occur. As patterns emerge, you’ll have found important clues to solving your mystery.
The methods for tracking your symptoms are endless. An overview of my favorite free digital systems can be found here. The key, of course, is to find what works for you. Paper and pen, or fully digital- it doesn’t matter. What does matter, is consistency. That’s a tall order when you’re exhausted and can’t remember 5 minutes ago. Or maybe you physically can’t move or speak, or your pain level is more than you can bear.
Prepare. Enlist help. Do what you can.
What to track
•Look for patterns. Do your joints hurt in the morning, but not in the evening? Does the weather affect you? Times of year? Stress? Do certain symptoms always appear together? How frequently? How often do you have your symptoms? What are they? Is only one side of your body effected?
•If possible, count the number of times your symptoms occur per month. Counting everything can be overwhelming. So for starters, just focus on one or two symptoms. For myself, I found that I have ulcers in my mouth and throat nearly all the time. I mentioned this several times to my doctors. However, I finally kept track of them last year. By paying attention to how many I had during the year, when they developed and how long they lasted, a pattern began to unfold. I had facts. Attaching a number to my symptom is much more telling than just saying it happens “a lot”.
•Look for triggers. What are you eating? What activities are you doing? Where are you spending your time? And what’s in that environment?
•Also, listen for what others notice. They may make statements like, “Boy, you just can’t remember anything anymore!” Or, “you used to love reading. What’s up with you?”
Is there anyone you live with that can give you feedback? Or a friend who has known you well for a long time? Their observations can be very helpful. They can offer an objective perspective. And they may recognize changes that you don’t.
•Do you have any visible symptoms? Rashes? Swelling? Use your phone’s camera to take photos. Store these on your phone, in a separate folder. Bring your phone with you to appointments, and show these photos to your doctor. Those miserable ulcers I mentioned? I photographed quite a few of them. Thankfully I haven’t sent those pics to anyone by mistake. They’re not exactly flattering. But they have been remarkably helpful for my physicians. They can see where they occur, and how large they are. There’s a wealth on information in a photo that you might not think to tell your doctor. They know what they’re looking for.
You might include shots of what you look like without symptoms. The visible contrast between your sick and healthy photos may help explain the severity of your symptoms.
Using your log
Your notes and photographs can be invaluable for both you and your physician. However, they can also be overwhelming. Before you hand your doctor a stack of notes, try to organize them or summarize them. With your photos, delete the unnecessary multiples.
In preparation for my first rheumatology appointment, I had listed common symptoms by body system, for instance: neurological, skin, GI, etc. It was handwritten, one and a half pages. I mentioned it at the beginning of the appointment and asked if it would be helpful. I also mentioned the pictures on my phone. He was very glad to go over it all. (And I totally earned some “cool patient” points.) That information guided much of our time together. And it saved him a lot of guesswork.
However, I have been with doctors who are overwhelmed by getting everything at once. Instead of facilitating communication, it shuts things down. So nowadays, I always prepare the notes. But I ask before handing them over. Even if the practitioner isn’t interested in them, the information is fresh in my head. This leaves me better equipped to answer questions.
Perhaps the most difficult, yet important task of all is keeping your head together. Make it a goal, not a must. If you’re human, and I assume you are, you’ll fall apart at some point in this wilderness journey.
There’s a common proverb in healthcare that says:
A little education and a big imagination is a dangerous combination.
Ain’t that the truth. As patients, we want to know what the heck is wrong. We’re tracking symptoms. Doing research. And thanks to our good friend Dr. Google, we’ve narrowed the possibilities down to 5 diagnoses. We might even have a treatment plan figured out.
We’ve changed our diets. Adjusted our lifestyles as much as possible. And we’re trying out all sorts of alternative therapies.
Afterall, we’re the ones affected. Unlike our doctors, we don’t have a file cabinet full of patients to consider. Just one. Unable to get out of bed, yet again, we have the time to try to figure out what’s stolen our life. Because dang it, we want it back.
Undiagnosed illness can quickly consume a person. It sure did me. It takes over your life; dictating what you will and won’t do. It invades your work, your family, your hobbies, your meals, your sleep. There’s nothing sacred. Naturally, it’s going to try to absorb your mind. How do you NOT become consumed?
Finding a “new normal” seems impossible- you never know how you’ll be from day to day. There are countless adjustments to make. And for most of us, we view them as temporary. Somehow, it’s just a given that we’ll be ourselves again. If we can only get that diagnosis, or that treatment, or ...
You are not your disease
You’ve heard that before, right? Sometimes it’s just what you need to hear. At others it’s infuriating. Friend, while you find yourself floating aimlessly in this vast sea, don’t lose hope. Don’t lose you.
Pursue your interests
Perhaps you only have energy to read about them, but don’t neglect those things that make you feel alive. Me? I was born to sing. When I do, I sing with every cell in my body. I do everything I can to make our band’s rehearsals. Because doing what I was made to do reminds me of the bigger picture. Sick or not, I have a part to play. I still have something to offer- a job to do. I still serve my Creator.
Find ways to encourage other people
Write them a note. Pray sincerely for those in your circle who are in need. Call up someone who’s hurting and love on them. You may be able to coordinate some sort of help. Whatever you can do- do that. But make the effort to move your perspective outside of your own circumstance. It will save your sanity. And you’ll be reminded of the wide scope of suffering. The one you comfort, may comfort you.
Give love, even while drowning in your own need. That’s real love. It’s what we’re called to do.
Discover new things
You’re probably learning far more about disease than you ever wanted to. And perhaps reading about the things you love to do, instead of actually doing them, is only painful. I’ve been there.
Those first years of “mystery illness” left me unable to walk at points. There were days I couldn’t hold my head up, or speak. And yet other times, I was just really tired. I spent my days on the couch, and my nights in my bed. Always laying down, but not always asleep.
I couldn’t go to school. I couldn’t go to the job I loved. My friends were off dating, graduating, and getting married; and I was watching my mother cut up my food for me because I couldn’t. I knew I had to keep my brain busy, or I would give into bitterness. And eventually, I’d just give up.
When I could move my arms, I taught myself to knit. When I could only hold a book, I began learning a foreign language. When I couldn’t do that, I would replay in my mind the scriptures I was memorizing. In those years, I picked up all sorts of hobbies and random information. I read about welding and farming. I learned how to spin yarn.
These days, I’m much better as far as my mobility goes. I haven’t welded in years, and I don’t do any farming. But that’s not the point. Those books and hobbies gave me something to work on when the rest of my life seemed off track. I had something to talk about, to think about.
Dip your toes into those things you’ve always wanted to know. Explore.
The statistics on autoimmune disease and its prevalence are nothing short of shocking. Medicine itself has been caught off-guard and our doctors are often at a loss on how to help. Patients seemed doomed to a purgatory of no diagnosis. No answers. Yet there is plenty we, as patients can do.
Find a system that works for you, and use it. Pay attention to what you find, and communicate it to your physician. Fight to keep a sense of who you are. Find something to “get into”. Love others.
Waiting for a diagnosis doesn’t mean wasted time. I hope you are encouraged, friend.