By Christine Wolf
No matter where you are in your journey with chronic illness, you are not alone. At any point, it’s all too easy - and common - to feel like a victim. But, the journey can be made easier by understanding chronic illness’ three phases, and then finding ways to acknowledge your diagnosis and take care of yourself.
Three Phases of Chronic Illness
1. Initial stage
In the initial stage, you might experience the following frustrations:
- Unanswered questions - What are the possible diagnoses? Who could best treat them? What process should you follow? What’s the best protocol? Why is this happening? Could you have prevented this?
- Feelings of abandonment - We’ve grown up thinking our doctors have all the answers. When they don’t, we tend to feel untethered from those we trusted to guide us.
- Obsessed with finding answers - Armed with an Internet connection, these questions and feelings have a way of making their way into search engines and online forums, compounding feelings with a multitude of conflicting perspectives and approaches.
2. Mid-journey stage
This stage is filled with mixed emotions. At some point, a doctor is seen. Is it the right one? The symptoms and history are described, and an approach is recommended. Maybe you hit the jackpot and find the right doctor who makes the right diagnosis and prescribes the protocol you need to start feeling better immediately. If this is the case, please pen an article titled “I Am the Rare Exception to Living with Chronic Illness.” Unfortunately, that doesn’t happen for the majority. Instead, we face:
- An inability to access treatment (doctors overbooked; financial constraints).
- Conflicting diagnoses or protocols.
- Insurance denials.
- Moments of panic.
- Highs and lows - feeling like you’re getting closer to the “end,” only to experience a setback, suffer from a new symptom or gain perspective that the end is not as near as you believed.
- Challenges with others who question or doubt your struggles, particularly if symptoms aren’t visible or answers are not clear.
- Consuming, intense feelings that your health issues define you.
- Certainty that you’re missing something.
- Feeling that you’re approaching things incorrectly.
- Worry that you’re not up to date on the latest research.
- Concern that you are a “problem”.
This stage of the journey is the most important because it is, after all, pure fiction. A resolution will not be reached, because chronic illness is not cured but, rather, managed. And only when you drop anchor in this sea of radical acceptance will the churning waters eventually calm. So how do you “set anchor” sooner than later?
Acknowledge the Obvious
Your challenges are incredibly difficult. This isn’t easy. Honor yourself by acknowledging your struggles and feelings, including your:
- Sense of loss
- Desire to want to give up.
- Jealousy toward others who don’t deal with this.
- Wish that someone would manage this for you.
It might be the last thing you believe, but there truly is life beyond these challenges. You may even have to force yourself to accept that fact. But the sooner you do, the better you’ll navigate the journey. So do whatever it is that gave you joy before the challenges, even if modification is required. Or try something brave and new.
You’ve got this, even if it’s something as simple as:
- Reaching out to friends.
- Taking a walk.
- Practicing deep breathing.
- Binge-watching a series on Netflix.
- Seeing a therapist.
- Joining a support group.
Gift Yourself the Time to Grieve
This isn’t what you signed up for, so there will be an unspoken “loss” about how you thought things would go. It’s completely natural to question why you “didn’t see the signs sooner.” But beating yourself up and pushing yourself to keep a brave face at all times are just roadblocks along the way. Allow yourself time for sadness and contemplation. Try not to stuff your feelings. Instead, take back your power, and overcome feelings of helplessness by allowing yourself to experience and express the complicated emotions chronic illness brings. You might have tears, anger and deep sadness. And if you’re like most of us, you may even look for ways around the struggle. But once you’ve fully grieved what was, you can move forward with acceptance about the enormous strength this journey requires - and discover you’re more than capable of staying the course.