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Posted on 2. March 2017

How Not to Feel Like a Victim When Managing Chronic Illness

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”.

3. Resolution

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:

  • Pain
  • Confusion
  • Frustration
  • Sense of loss
  • Exhaustion
  • Depression
  • Anxiety
  • Anger
  • Resentment
  • Desire to want to give up.
  • Jealousy toward others who don’t deal with this.
  • Wish that someone would manage this for you.

Practice Self-Care

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.
  • Meditating
  • Practicing deep breathing.
  • Binge-watching a series on Netflix.
  • Journaling
  • Cooking
  • Volunteering
  • 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.


Comments (5) -

Sally C Jones
11:59 AM on Friday, March 03, 2017

Living near Boston has given me more knowledgeable physicians than many people have. I have lived with CVIDS including RA & OA, bronchectisis, and unbelievable exhaustion for more than 16yrs.  It took years to get my husband to understand that he couldn't just "fix me."
My advice is to keep an upbeat attitude each day. My husband helps me a lot doing the cooking, laundry, and grocery shopping. I help in whatever way I can, even if my help is just sitting with him and reading the recipes to him. Give him praise rather than instruct him on a better way to proceed unless he asks for advice.
In my early and middle stages, I wanted to tell everyone about all the fascinating things I had learned about my illness. People really don't want to know!!  So, find a good hematologist, pulmonologist, orthopedist, physiatrist and rheumatologist and keep your complaints to the correct specialist.
To everyone else, when asked how you are doing either say with a smile, "Up and Down" or " Ok, just don't look under the hood!"

1:51 PM on Tuesday, March 07, 2017

The other day a fellow CIDP stated, what choice do we have.  We have many.  We do not have to take IG.  We could choose to do nothing.  Some do not get this choice.  We can or cannot chose to change our diets.  We chose to go to therapies.  We have choices or we become victims to our diseases.  I chose the best decision for me.  I am not a victim, I did not chose chronic illness, it happened.  I work to make the best of it I can.  We chose everyday, how to continue on.  We can be a victor or a victim, that too is a choice.  

9:16 AM on Monday, March 27, 2017

Hi Guys, I'm helping a friend who's suffering from fibromyalgia. Does anyone ever tried using cannabis as an alternative meds? I have read many articles suggesting highly concentrated cannabis oil can be effective for people suffering from fibromyalgia. So far northern lights strain is on top of my list. I got it's details from www.ilovegrowingmarijuana.com/northern-lights/. Any help or personal testimonials is much appreciated. Thanks

Elizabeth Howard
10:32 AM on Friday, March 31, 2017

I saw on page 7 of the latest issue of IG Living Magazine that someone was interested in information on Stiff Person Syndrome.  Do you have an event page that you can put an ad for a symposium on Stiff Person Syndrome in May.

Kim Branch
8:00 PM on Wednesday, December 25, 2019

I have had treatments 6 mo in 2018 united healthcare caterpillar self funded ins.
Ok 2019 told blue cross would pay. Since then I’ve been denied ALL appeal self funded yes.
I am wondering what’s it going to take to get the self owned insurance to be held liable shall I die of CVID? I had proof I escalated beautiful less infections I read 898 within 6 mo. Started around 400 plus IGM low plus 2 subclasses among many other horrible scary labs. Still denied. Well Jan 1 2020 were going to go back to UHC. I do have a advocate that will work alongside the dr & nurse. My third immuno dr said you need to sue their asses off this is patient neglect. Question how on earth can caterpillar get away without treating me only because I was positive for one oval 23!!!
Okay but all the proof was there it worked this year I e been in hospital & ER more times than I care to think. My infections now run right at every 3 weeks like clockwork. Yes I’m scared to death of my future. We’ve even talked divorce so I can go on welfare & ssdi to get myself treated. Any insight on this matter? Thanks kim

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