By Sue Ingebretson
Do you feel alone with fibromyalgia? You may be surprised to learn that there are shocking health risks associated with the isolation of chronic illness. These factors include a tendency toward addictive behaviors, self-sabotage (when it comes to adopting healthy habits), and even a shortened life expectancy.
This is a BIG deal.
Discovering why we tend to isolate ourselves or why we may feel we have no choice in the matter deserves further exploration.
This three-part article will get to the root of why isolation happens AND what we can do about it.
Have you ever felt frustrated with fibromyalgia? Did you struggle with undiagnosed symptoms for months or even years? Did you feel discouragement, aggravation, and/or a sense of futility trying to get others to understand what you’re going through?
Dealing with the day-to-day challenges of a chronic illness such as fibromyalgia can be a lonely process.
It can feel so lonely, in fact, that you may not think anyone else knows what it’s like to be in your shoes. This feeling may persist regardless of your home life, relationships, or extended community.
You may be surprised to learn that feeling a sense of loneliness and isolation isn’t only for those who live alone. Loneliness can occur whether you’re actually alone or even when you’re surrounded by others. It’s your own perception and interpretation of being alone that counts.
For a number of reasons, it’s common for those dealing with chronic health challenges to feel an increased sense of loneliness or isolation. I’ve listed four main categories of isolating circumstances below. Perhaps you can relate?
Feeling unheard or unable to express how you feel
I remember once participating in a radio interview with a panel of authors and doctors talking about how hard it is to get others to understand life with fibromyalgia. The doctors, in particular, encouraged everyone to speak up to their family, friends, and their health care practitioners. They told them to share their feelings and frustrations.
While the intention behind that suggestion is kind, I wouldn’t have found that advice to be very helpful years ago when my struggle was at its worst. I wasn’t able to figure things out for myself, much less articulate my feelings to share with others.
At my worst, I remember waking with my bones in pain, my hip joints feeling as if they were filled with shards of glass. I felt dizzy, nauseous, detached from the world, and so fuzzy in my thoughts that I could barely string a few coherent words together.
I had no idea what I was going through. I had no idea what to call it and no official diagnosis. And while pain was a big part of my experience every single day, even more than that, I felt a threatening undercurrent of fear.
Here are a few things that did penetrate my awareness at that time:
- I was afraid of the unknown – why was I so sick?
- I was afraid of what doctors weren’t telling me.
- I was afraid of what was going to fall apart next.
- I was afraid of not knowing what made my symptoms worse.
- I was afraid of not knowing who to trust.
Can you imagine this picture? What happens to a body that feels the overwhelming emotion of fear every waking moment, day after day?
The answer to that question is not a great mystery. When we live in fear, our symptoms worsen. Fear alone – even without contributing factors – can increase symptoms. At the peak of my illness, it took every bit of effort I could muster just to exist.
I wasn’t able to construct logical thoughts about how I was feeling. I wasn’t able to arrange my own thoughts into a logical pattern of what was going on. I didn’t express my darkest fears to either my doctors or my family. Because I couldn’t make sense of it, I kept my fears to myself.
Times have changed, however. Nowadays, information has a global reach. There are many resources available to help fibromyalgia patients express their symptoms, experiences, and fears to others.
Would you like some help?
If you haven’t already done so, please download this “Letter to Explain Fibromyalgia to Others.” You can print out this handy letter to give to anyone who may benefit from a better understanding of what it’s like to live with fibromyalgia.
This is one simple way to take back control of expressing how you feel.
Symptom unpredictability of chronic illness
The unpredictable nature of symptom flares leads us to feel unsure about accepting invitations or making commitments for future events. How can we commit to being somewhere when we don’t know how we’ll feel at that time?
The impact of the unpredictable nature of chronic illness varies from one person to the next. Some people who are more “go with the flow” types may not feel as restricted as those of us who are Type A personalities.
For those of us who feel safe and secure in a more structured environment and who like to plan in advance, the unpredictable nature may lead us to feel any of the following:
- Irresponsible (we can’t be counted upon to show up)
- Neglectful (we can’t be counted upon to follow through)
- Unreliable (we can’t be counted upon to be consistent)
All of these feelings lead to or at least contribute to a feeling of detachment from the world around us. To alleviate some of this frustration, we can express our frustrations and limitations to others. We may choose to explain that we’d love to commit, but are simply are unable to do so. Or, we can set the stage for committing to the event with the understanding that we may have to make last minute changes.
Be sure to check out Part 2 (next week) of this series to learn more about how finances and emotions also play a role in this important topic.
Do you feel that isolation is a risk factor for you? Please share your thoughts in the comments below!