Fear – and the anxiety it creates – is one of the first emotions we encounter when we’re diagnosed with a chronic illness.
Did you know that naming your fears is the first step in taking away their power? Here are the 7 fears we face when we live with chronic illness – and 7 tips for managing them.
There are many types of chronic illness, though they all share a few characteristics. Once you understand what those are, it’s not hard to understand why they instill so much fear in those of us who are living with life-long illness.
Chronic illnesses:
- have complex causes
- carry many risk factors
- cause some sort of disability or impairment
- are treatable but generally not curable.
They also vary widely in both how and how much they affect our everyday lives. And they are often unpredictable in the course they take.
It’s easy to see why fear and chronic illness are natural companions.
After all, you’re living with a complex, uncurable medical condition with symptoms that can fluctuate widely.
And it changes your life.
We feel fear because we feel threatened by something that we may not fully understand and cannot fully control.
Why it’s so easy to bury our fears when we’re diagnosed with chronic illness
We all come to terms with our diagnoses in different ways.
I struggled with vague symptoms for the better part of almost two years before I was diagnosed with myositis, a rare autoimmune disease which causes significant muscle weakness and fatigue.
I was hospitalized at the time of diagnosis and went into acute respiratory arrest before they had an opportunity to conduct any tests.
When I finally received a diagnosis, oddly, I didn’t immediately acknowledge feeling fear.
Instead, I felt relief. It had been a long road to diagnosis, as is often the case with autoimmune disorders.
Having an answer was a step in the right direction – because the next move would be determining a treatment.
Aside from relief, I just felt depleted.
It’s natural to bury our fear: it can be difficult to acknowledge that we’re afraid when we’re reeling from a new diagnosis and are physically and mentally exhausted.
But burying our fear is a coping mechanism that doesn’t work.
7 Fears that Chronically Ill People Struggle With
It’s been said that we can’t fix what we can’t face. And if you don’t address it, it will limit your ability to adapt in ways that are emotionally healthy.
The prerequisite for learning how to manage your fear is being clear about what it is you’re afraid of.
At the root of of the fears of living with a chronic illness is a fear that we’ve forever lost our sense of “self” and who we are in the world.
These are the 7 fears that I believe people with chronic illnesses share:
1. We’re afraid of losing our ability to be completely independent and becoming a burden to our family.
It is very difficult – both physically and mentally – to need help doing things that we previously took for granted. It impacts more that just our lives – it impacts the lives of our families or whomever we need to rely on to provide help.
2. We fear losing our financial security.
The cost of treating chronic illness is staggering. In 2020, The American Action Forum referenced a study that reported that direct healthcare costs for patients with chronic disease are five times higher than costs for individuals without a chronic condition.
3. We have a fear of being undesirable to others.
This can include feeling undesirable as a partner, as a member our community, and as an employee or potential employee.
4. We’re concerned that others will see us as “weak” or compromised, simply on the basis of our limitations, regardless of how visible they may or may be to others.
Many people with chronic illness are also afraid that others may think they’re lazy or that they’re overdramatizing their condition to get attention.
5. We live in a constant state of uncertainty – and the unknown can be frightening.
It’s easy to get lost in the “what ifs”.
What if the treatments don’t work?
What if they work for a while but then stop working?
What if we are diagnosed with another chronic condition that further complicates our treatment and increases the threat to our health?
6. We’re afraid of being lonely or being abandoned.
What if our partner leaves us? How we will find and maintain a connection with others if we aren’t able to socialize in the same ways and feel that we have little in common because our lifestyles may have changed dramatically.
The reality is that it can be hard for people without chronic illness to understand what it’s like to live with it.
7. We fear that our illness will hasten our death.
A 2018 study found that 7 out of 10 deaths in the U.S. are caused by chronic disease.
While many chronic conditions are successfully managed with lifestyle modifications and appropriate treatment, they are complex, not always predictable, and frequently coexist with other chronic conditions.
How I’m facing my fears of living with chronic illness
We all cope differently. I struggle most in the quiet of the evening, when I’m lying in bed. I can’t turn my brain off.
Thoughts – mostly irrational – rush in, whirling around. And I’m not able to control them. Everything seems like a catastrophe in the making.
My biggest realization about my fears of living with a chronic illness is that they are rooted in grief. We grieve what we’ve lost.
Some of these losses are very real. But some of them are perceived. Do you really believe that the people who truly love you will love you less because you’re ill?
Tips for coping with the fears of living with chronic illness
1. Be specific about what you’re afraid of.
When we articulate our fears – ideally, out loud or on paper – we can be clear about what we’re actually trying cope with.
2. Educate yourself about your condition.
We have different preferences and comfort levels with medical information. The goal is to inform yourself with information that you understand. Be wary of overwhelming yourself with too much information, or with information that will make you more anxious. Ask your doctor to recommend resources that will be appropriate for the levelof information you’re seeking.
3. Join a support group for your specific condition.
It’s a great way to learn more about living with your illness, and to understand how others are coping with many of the same struggles that you’re facing. It’s also an opportunity to provide support to others, and that can be very empowering!
4. Find a medical team that you trust and like.
You’re going to have a long-term relationship, and it’s critical that you feel you have a two-way relationship built on trust and transparency.
5. Pay attention to when you feel most anxious and to the activities that help reduce your anxiety.
My anxiety levels are much lower when I’m busy – physically and mentally. My anxiety is highest when I’m in bed, unable to corral my thoughts. I’ve found that sleep meditations (there are many choose from on YouTube) are extremely helpful.
6. Establish a daily routine.
Get up at the same time, go to bed at the same time. Create a schedule for yourself and list the tasks you want to complete. Incorporate time for exercise – even if you’re only able to do light activity from a seated position. Make time to learn something new, read or do something creative. Eat healthy food – swap out foods that may cause inflammation or have fewer nutrients with foods that are anti-inflammatory and more nutrient-dense.
7. Deal with what is.
Focus on today, on this moment. If you are firmly planted in the present, you can make the right decisions and choices for right now. That’s all any of us can do, regardless of our health.
Give yourself grace
Give yourself grace. Life is not perfect. Allow yourself to find acceptance so that you can craft a new life that honors who you are. You deserve it!
My sister bought me a wonderful book, The Book of Awakening , by spiritual writer and poet, Mark Nepo. The book has one entry per day, followed by a simple reflection or exercise.
The purpose of the book is to help us discover the joy of being alive, to discover who we are and to live authentically within the present.
“Whatever crisis we face”, Nepo writes, “there is this voice of embodiment that speaks beneath our pain ever so quickly, and if we can hear it and believe it, it will show us a way to be reborn.”
Another great post, Sandy, with so much to think about! I think this will be helpeful to a lot of people.
Sue
My Book: Finding a New Normal: Living Your Best Life with Chronic Illness
Thank you, Carol! I’m sure that so many of us share similar fears. Part of learning to cope with them is understanding that we’re not alone, and can help each other as we navigate living with chronic illness.
Excellent read! This sums up many of the feelings I myself get, being newly diagnosed with ADHD and Bipolar II and being married to my husband who is chronically ill himself (severe hemophilia B and a seizure disorder). It’s crazy to think about how many of these things are actually interconnected. I was actually recently thinking about how it’s hard to tell my bosses that I’m burnt out and need a break because unless it’s a paid vacation, my mental health will simply get worse worrying about our financial future. And I don’t want to ask other people for help all the time, even if they are relatives, for fear of losing my independence. For me, it’s a very valid fear as I have already personally experienced the negative consequences of being indebted to other people.
By the way, I also write about chronic illness on Hemophilia News Today (my column is HemoWife). Do you mind if I reference this article of yours in case I happen to write about this topic?
Cza,
You are certainly dealing with a lot. It is very difficult to admit that we have limitations – it can be hard for people who are healthy to understand the emotional and physical stress of chronic illness, and you’re in a challening situation because your spouse is ill as well. The fears are definitely valid. I hope you find that writing about chronic illness has helped – it can be cathartic, and you’re helping others, too! I will look at your column, and feel free to link to my article if you write about this topic.