The many years that I have struggled with chronic illness have given me a passion to help others on their journey with it. Check out these entries (the newest will be here at the top) for some helpful insights and meaningful encouragement!
ENTRY 3: BIG QUESTIONS? BE OKAY WITH THE GRAY.
Today’s Takeaway: Acknowledging that there will be big questions in your journey and then working through the gray on a daily basis are key to embracing the peace that God truly has to offer you in the middle of your chronic illness.
Due to the complex nature of our symptoms and our diagnoses, those of us who struggle with chronic illness typically have a long, running list of doctors that we have seen in the past or that we see regularly. My list currently includes six active physicians and a host of others that were crossed off at some point because they just weren’t listening or working on my behalf, or because they wanted to throw a bunch of pills at me without figuring out what was actually going on in my body. Some were absolutely content with the fact that their particular training, which in my opinion kept their thinking inside the box of their specialty, was not answering the big questions that were plaguing my physical health on a daily basis.
Big questions on the journey of chronic illness are a big deal. They come from those doctor’s appointments and test results, of course, but they also come from the ins and outs of our everyday life. Big questions actually—believe it or not, if you have just started your journey– become the norm. It has taken me a terribly long time to learn this. I am a self-professed black and white thinker; however, autoimmune issues, mysterious symptoms and undiagnosed conditions over the years have helped me to accept that there is so much gray. My ability to understand, acknowledge and accept that the gray is probably here to stay has been key to, only so far as it has merged with my Christian faith, being able to cope with my illness.
As we flesh this out today and unpack our big takeaway, I want to discuss the different types of question marks that encompass this journey called chronic illness.
First, question marks can come in the form of mis- and un-diagnosed conditions. In the beginning of my journey, when I was in my early thirties and my health issues first started to surface, the idea that I would have question marks left unanswered after seeing the doctor was foreign to me. Physicians knew how to heal and how to fix, therefore my expectations were high. Testing was performed, all appeared to be well except for a minor diagnosis that could be treated with an antibiotic. My initial symptoms persisted and then the first big question came. . . Did they really know what was going on with me? It was the first of many, many visits with many other physicians that would prove to only lead me with more—you guessed it—question marks. I am grateful for modern medicine and the physicians who administer it, but the reality is that there is still much that many do not know or understand.
Second, question marks come in the form of concern about and management of everyday symptoms. Let me just say right off that for many of us, this can oftentimes lead to anxiety, anger and frustration, and a sense of helplessness. With chronic illness, you may wake up every single day with big question marks that sound like the following: Am I going to feel terrible today? Will I have episodes of my condition today? How bad will my symptoms be? What can I do to ward off symptoms today? Did I eat something/do something yesterday to exacerbate my illness today? What will I be able/not be able to do today? In addition to those more general uncertainties, there are many that are specific to situations that may arise in your personal journey. For example, when your condition has been bad enough to constitute an emergency visit, you may wake up every day for a period time asking yourself, will I have to go to the ER again today? When you are waiting for tests to be taken or results to be released, you may ask yourself, are the underlying answers just a nurse’s phone call away? When the diagnosis is one that is not widely known, you may ask yourself, who will I ask for advice, and will my loved ones even believe/understand me? The list of questions truly goes on and on as does the emotional and mental strain that accompanies them. It can be and oftentimes, is, exhausting.
The last set of question marks that we will discuss today, although definitely not the last of the inexhaustive list that we deal with every day, revolve around our response to all of the above. They sound like this: How am I going to deal with my symptoms today? What will I do to cope with my condition? Do I think I will be able to get through another week, month, or year like this? HOW am I going to get through another week, month or year living with this chronic illness? I understand, dear friends, that these are deep and somewhat disturbing questions to read; however, they are reflective of sincere concerns sufferers have. What we need to notice about these particular questions is that we are asking them either consciously or subconsciously. In other words, our chronic illness has to be dealt with one way or the other. If we fail to actively acknowledge these big questions, then we could find ourselves in a mental state of denial and/or a physical state of fight or flight survival mode that only exacerbates our condition. Trust me, it’s better to put this group of questions directly to the table with a proactive act of acknowledgment and subsequent response.
Here’s what that might look like for you. Chronic illness is presently a part of your journey, its symptoms are affecting you and the uncertainties surrounding it are a reality. Chin up! There’s a second reality that you can embrace. It’s that the gray is okay. What?!? I know, this sounds impossible. But it is possible with the third reality: that Christians suffering in and through chronic illness have all they need to cope with the unknown and to be okay with the gray. Faith in who God is, how He is working in your journey and what He’s going to accomplish because of it is yours for the taking. The coping comes in the hoping! Peace in the middle of your storm is possible. And it is possible every single day. I know this because God’s Word says it is.
There’s more we could talk about but for today, I will leave you with (guess what?) a set of questions. Take note, however, that these questions are the kind that can point you toward that place of coping and ultimately, to a place of real hope. P.S. Starting a journal would be a fabulous first step!
- When you dig deep and get the heart of your thoughts/feelings/perspectives about your personal experience with chronic illness, what do you find? Include the good, the bad, the pretty and the ugly. It may be helpful to use one-word descriptors or short phrases in your responses.
- What do you do typically do with those responses? Do you honestly acknowledge them? Stuff them? Give them over to God in prayer? What could you do differently?
- What do you know about God’s character as shown in the Bible? Reflect on His attributes. How do you merge His attributes with your chronic illness experiences? With your unknowns/your big questions?
Our chronic illnesses may seem like a never-ending path of big questions. But be encouraged by this truth: that in the middle of the gray, you can be okay. I can be okay. We can be okay. When we place our illness and all of the unknowns in the loving, comforting, healing hands of God, we can and will experience His peace as we persevere through, one day at a time.
2 Corinthians 5: 7, “For we walk by faith, not by sight.”
ENTRY 2: BECOME AN INVESTIGATOR
Big Takeaway: Become an investigator! You have to become aware of the connections between your personal symptoms and the potential triggering factors behind them.
There’s one word that describes the last five or six weeks: flare. My small fiber neuropathy has been causing more pain and numbness than usual. Most days have been manageable but on Wednesday my symptoms went into overdrive, and it was all I could do to get through the morning. Every single movement caused muscle pain, and every drop of the pin around me caused a burning, tingling sensation all throughout my body. The day was long, frustrating, and barely bearable. But the next day was better. I thank the Lord for the strength and grit He provided me!
If you’ve been diagnosed with a chronic illness or autoimmune disease, you can relate to having good days and bad days. Good seasons and bad seasons. But do you know that you don’t have to be side-swiped with every ebb and flow of your symptoms? That you can, oftentimes, learn to predict or at least partially see your flares or your difficult days coming on? Here’s a bit more of my story. . .
Spring and fall. After a few years in a row of severe episodes that led me to the ER (this began about six years ago), I took notice that these trips were always in early November and late spring. This was before my SFN diagnosis, but after the POTS diagnosis (POTS still wouldn’t explain the nature and severity of these trips and I’d always leave without any real answers). It actually occurred to me after having large medical bills to pay about every six months—and when I looked at the dates of my trips– that my symptoms were more severe in the fall and spring seasons.
Certain foods. This is a whole blog in itself, but I’ll just suffice to say that after (literally) 15 years of learning what my body can and cannot handle with food, I am finally very confident that I have that part of the puzzle figured out. I have to limit the types of foods that I eat, and I know which ones trigger my symptoms. Example: I ate packaged cookies last night and woke up this morning with a headache. It’s a price I am paying and with these illnesses, there are transactions and trade-offs that you learn to be aware of and make choices about—but that, again, is yet another topic for another post!
For now, I want to get to our take-away for today. You have a choice to be a bystander to what is happening to you OR you can become an investigator. To be an investigator, you have to become more aware. No, we can’t control everything or even close to everything about our illnesses, but there are things we can do! Here are a few that I hope will be helpful for you:
- You can learn the known triggers of your symptoms by simply reading about your condition and staying up to date on the research. You have many that are unique to your own body, however, there are many others that are well-known to your specific condition. (I am amazed that many migraineurs still don’t know that wine and chocolate are major triggers!)
- You can start making mental notes and yes, even taking actual notes in a journal or notepad. They even have apps for this. Record when symptoms occurred and what factors may have contributed to them. Think about foods you ate, activities you did, stress levels, etc.
- You can join a Facebook group specific to your diagnosis. Most of these are designed to provide encouragement as well as information about varying treatments (I love the functional medical tid-bits I get from the groups I’m in!), however, they are also great for learning what might be contributing to your symptoms because you can read so much about other people’s experiences.
I know, learning about your symptoms and what might be triggering them–it feels like a guessing game. Especially at first. And it takes patience and time. Isn’t that what an investigation takes, though? You sort through a ton of information until you find substantial clues that end up coming together to solve the case. Not that I am suggesting yours or my case will ever be solved—I’ve prayed that prayer a thousand times and somewhat like the apostle Paul, decided that the Lord has given me thorns in my flesh to remind me of my need for His grace over my weaknesses.
Becoming more aware is a big step—but it is one of the first steps we can take that can potentially bring us a substantial win! If I can anticipate a difficult day or season that might be coming in my near future, then I can prepare myself to better handle what I might have to experience with my illness. Or if I can avoid a surge of symptoms by not opening up those strawberry crème-filled off-brand Oreos from Wal-Mart (who even thought of such yumminess anyway?), then truly, my knowledge has given me choice and a sense of control. It is worth the effort to me. My challenge to you, then, is to consider becoming that investigator of your condition. The reasoning is simple: personal awareness can and will serve you well as you navigate on your journey of chronic illness.
ENTRY 1: SO MUCH TO SAY
There’s a lot to say about chronic illness. I experience so many things with my own, I read a lot, ask my doctors a ton of questions and I also share one-on-one with others who ask about their own battles with chronic conditions.
Those of us who struggle with this need so many things! We need informed physicians as well as a deep, vast and personal knowledge of our condition. We need the support of others as well as supernatural grace to be sustained by Christ when those same others can’t relate. We need determination to wake up ready to tackle each day, one day at a time, whatever may come our way and we need the courage to know when to declare that our work is done for the day, even if it’s only a couple of hours later.
These posts will be for anyone who wants to read them, whether you are struggling or not struggling with chronic illness. I’ll share tips, timely research that might help, and every once in a while, a tantrum because living with difficult medical conditions and life-altering symptoms can be draining and oftentimes, overwhelming. Please, no sympathy needed—this is a broken world we live in and we’re all dealing with something! Let’s be thankful that we can put our faith in SOMEONE, not the something that may actually never go away this side of eternity.
I will be sharing my bits and pieces to help others and create conversations around chronic illness. So if you see this image at the top of my post, either here on my teaching ministry page or my personal page, you will know what it’s about. Join me if you’re interested! Share your comments in the posts. We can learn from each other and offer hope along the way.
~Jamie
Jamie Hoos 