The Cycle of Chronic Illness
The scenario:
Elusive symptoms. No clear diagnosis. You can’t get the right lab tests run (or the right person to read them). You’re frustrated.
But you can’t just abandon your doctor. Time. Resources. It’s just not an option.
It can be maddening. And I get it. It’s why I’ve spent the last 10+ years educating an army of Functional Nutrition Counselors to help fill the gaps in healthcare at a more affordable cost and for a wider breadth of patients.
But let’s pause for a moment to discuss the allure of that diagnosis…
The author, Meghan O’Rourke says, “diagnosis isn’t the end point when you’re dealing with a chronic illness.”
(You can listen to my 15-Minute Matrix podcast episode with Meghan mapping Chronic Illness here. And be sure to pick up her newest book, “The Invisible Kingdom: Reimagining Chronic Illness.”)
For chronic illnesses – those symptoms that just won’t go away (whether from an infection like Lyme, Epstein-Barr Virus [EBV] or many others; an autoimmune condition; fibromyalgia; or long-haul) – that diagnosis may be just a piece of the puzzle. True, but partial. I realize the diagnosis seems like it can resolve our concerns and lead us to the best next steps. For some, it does. But, unfortunately, not all (I see you).
Yet the allure of the diagnosis is BIG. And it certainly can help, even if it isn’t a fix-all solution. Believe it or not, the big picture healing may happen, in part, before you receive a diagnosis. And still, much of it may remain in your hands after you are diagnosed.
Here’s the Cycle of Chronic Illness that I’ve created based on patterns I’ve seen in 100s of patients:
Rationalize
Retreat
Recognition
Relief
Realize
Resent
Reclaim
Kübler-Ross’ Cycle of Grief, introduced in her book, “On Death and Dying”, helped us identify our stages of mourning, both for self-acceptance and to receive appropriate support while experiencing significant loss. She also stressed that the stages were not linear. The time that each of us lingers in a stage of grief differs. And while some will experience all stages, others will only weather a few. Mostly, the cycle helped to describe what can be messy and hard to articulate, not just for ourselves but for those we love or counsel. Much like a diagnosis, the stages of the grief cycle were clues, not determinants. Again: true but partial (and open to interpretation).
Let’s look at each of those 7 stages of the Cycle of Chronic Illness to determine if you’ve ever been in one (as I have) or are in one now:
RATIONALIZE: This is the stage where you attribute signs or symptoms to life events or a known condition. It might be “my age,” “my long hours,” “my depression,” “my IBS.” Too much of this or that, or some other correlation. There’s likely a relationship between your symptoms and the culprit you’ve identified, but it may not be the whole truth. Nonetheless, you tell yourself it is. It must be.
RETREAT: In this stage, you pull away. You may feel guilt, regret or shame for talking about your signs or symptoms. You might even be embarrassed when they reveal themselves. Rashes. Lost patches of hair. Running to the bathroom (and sometimes not making it). You retreat from family and friends. You tell yourself that “nobody understands.” Perhaps you search for online groups where others “get” you. You comfort yourself in your retreat with assurances that you’re tired anyway. Why go out!
RECOGNITION: You’ve finally found a healthcare specialist that validates your experiences. They perform a test or assessment that assigns a name or provides some reasoning for what you’re experiencing. At last! A diagnosis or interpretation that you can latch on to. Finally there’s someone who doesn’t think that what you’re describing is “all in your head.”
RELIEF: Now that you (and this provider) know what it is, it can be fixed! You have X and they will do Y. You feel better knowing what to google, where to direct your attention, and having someone on your side who’s identified and can address the issue. Then life can return to “normal” (or so you believe).
REALIZATION: In the classic Hero’s Journey, this stage marks another moment of crisis. It’s the moment when you begin to understand that addressing this thing isn’t a one-and-done. Even knowing what it is (or could be) does not lead to all the answers. You still don’t feel 100%. Shit. What are you supposed to do now?
RESENTMENT: In this stage, you recognize that there are limitations to clinical insight, diagnostics, and interventions. You join the ranks of millions of others who stand at the edge of medical knowledge and understanding. There is no Quick-Fix. There is no easy understanding. There is no one and done. You may have displeasure, or even bitterness, for the systems that have failed you. That may be the health and medical systems that lead you on a wild goose chase. Unfortunately, it may also be your own body systems. Why can’t anyone (or anything) just get it right?!
RECLAMATION: Welcome home! This is the stage you will return to again and again. And hopefully, you will find a way to live here for longer periods of time. In the Cycle of Chronic Illness, this is where you find acceptance, awareness, discovery, and self-health care. It’s the phase where you learn how to speak to your family, friends, and medical team as a self-health advocate. You are not rationalizing or retreating, and you do not feel resentment. And the recognition comes from within. You are a rebel with a cause. The cause is you (and your life!)
If you too struggle with a chronic illness, as you read through these stages of the Chronic Illness Cycle, is there one that resonates with where you are right now? Can you take a moment and write down some thoughts about those feelings and that state?
And what does the 7th stage, reclamation, sound like to you? Is it a place that you welcome or a place that you fear? Does it seem like sovereignty or settling?
If you’re struggling with a chronic illness, I’m now accepting applications for small Case Study Groups for my upcoming book. You can learn more and apply here.
I am a lifelong student having done HCI, FBS, FNLP but these articles are like little golden nuggets, so helpful and really pointing out some of the difficulties we and our clients face. They are raw and honest and I absolutely love them.