By Sue Ingebretson
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 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.
Financial pressures of chronic illness
The cost of chronic illness goes beyond the emotional toll of stress and anxiety. The loss of gainful employment, financially supportive relationships, and perhaps insurance or other financial stability can be devastating.
As if chronic pain, fatigue, and cognitive dysfunctions aren’t enough to cause us worry, the burden of financial stress adds another layer. A lack of resources adds to the anxieties already implicit with chronic illness.
Inability to work may create an affordability issue when it comes to health care. Insurance costs, co-pays, medications, and out-of-network costs can skyrocket depending on the protocols and treatments used.
Working with a good financial planner can help, but if lack of resources is an issue, outside help may be necessary. And, of course, asking for help is a stressful situation in and of itself.
Identity shifts due to chronic illness
Do you consider yourself to be the same person you were before the onset of your chronic illness diagnosis? Most of us don’t.
We’ve had to adapt to our changes in employment, navigate new and existing relationship issues, and discern our physical and mobility limitations.
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After making the adjustments to our lives that we need, we may come to a realization of who we’ve become. Chronic illness has a way of refining our characteristics. Some become frustrated, bitter, withdrawn. Others discover personal resources of which they’d previously been unaware.
I’ve often heard fibrofolk refer to their former lives and their former selves. They recite a memory of a trip or experience and then say, “Oh, but that was me in a former life.”
In many ways, life before fibromyalgia does seem like a former life – a former version of ourselves. This doesn’t have to be a negative thing. For me, personally, I’m grateful for the changes I’ve gone through, the learnings I’ve embraced, and the new respect I have for my body and its capacity to heal.
How does the emotion of loneliness affect the body?
Until recently, there was not a lot of evidence showing a direct correlation between health risks and a person’s sense of loneliness or isolation. While the scientific community may be startled by the significant results, the rest of us probably are not.
Studies clearly show that a sense of loneliness and lack of social connection directly impact the body’s immune system. They increase inflammation, which is a major contributing factor to chronic health challenges. Among other contributing factors, inflammation leads to metabolic imbalances, risk of obesity, slow or impaired healing, and a lowered resistance to infections.
Inflammation is at the root of chronic health challenges and one of the glaring symptoms of an inflammation problem is decreased energy. That’s why so many articles regarding fibromyalgia and chronic illness address the issue of fatigue and energy as well as increased pain.
Practices, behaviors, and triggers that lead to inflammation also lead to pain and fatigue. Lowered energy is at the heart of this problem. To learn more about the factors that sabotage our energy reserves as well as factors that replenish us, review this article entitled “The Fibromyalgia Energy Crisis: A Balancing Act.”
But, is there more to the loneliness problem than inflammation? Yes, metabolic problems, obesity issues, and worsened chronic health symptoms are alarming, but is there anything else to worry about?
Unfortunately, there is. The problem is much deeper than previously understood.
“Social stress and isolation have long been known to affect the onset and progression of disease.” And, now, a sense of loneliness and isolation has been found to affect gene expression. (1)
In what way? How does this gene expression impact our overall health?
Here’s a quote that’ll knock your socks off: “Emotional isolation is ranked as high a risk factor for mortality as smoking.” (2)
Many of the studies on loneliness or social isolation zeroed in on the longevity factor of those who were observed. I’ll admit that my first thought when I read this was to discount the weight of averages and assume it applied predominantly to “seniors.” I was mistaken.
“The association between loneliness and risk for mortality among young populations is actually greater than among older populations. Although older people are more likely to be lonely and face a higher mortality risk, loneliness and social isolation better predict premature death among populations younger than 65 years.” (3)
I don’t know about you, but the age of 65 seems younger to me each and every day.
This article goes on to say, “Now, research from Brigham Young University shows that loneliness and social isolation are just as much a threat to longevity as obesity. ‘The effect of this is comparable to obesity, something that public health takes very seriously,’ said Julianne Holt-Lunstad, the lead study author. ‘We need to start taking our social relationships more seriously.’”
If the problem of isolation is so detrimental, what can be done?
Judith Shulevitz in her article “The Lethality of Loneliness” poses the question this way, “If we now know that loneliness, a social emotion, can reach into our bodies and rearrange our cells and genes, what should we do about it?” (4)
The answer lies in the question.
It’s about what we “now know.” We know that isolation is damaging. We know that social connections are not just important, they’re necessary. We know that social interactions benefit us at the cellular level. So, it’s time to act upon what we know.
How this relates to fibromyalgia
While it’s obvious to most of us here, fibromyalgia patients have a greater likelihood to feel isolated than the average population. Being diagnosed with a chronic illness can be one of the most devastating and isolating experiences one can go through.
The studies mentioned above were clear to report that feeling a sense of isolation was an individualized experience. As mentioned earlier in this article, a sense of isolation doesn’t depend on whether or not there are others around you. Some of us may even feel a greater sense of loneliness in a crowded room than when completely alone.
Because we have a greater tendency (than the general population) to withdraw from social activities, it takes an extra effort to overcome this natural inclination. The first step, as with most things, is becoming aware of the problem. Once we’re aware of the impact of feeling socially disconnected, it’s time to take action.
Besides interacting with your immediate friends and family, the following list shows a few ways to engage and to get plugged in to your community:
- Join in activities at your local church, community center, sports clubs, and meetup groups
- Join local support groups for those with chronic illness and for caregivers
- Join a local gym or fitness center
- Join a club that interests you: books, cards, sports, etc.
- Take a class and learn something new that interests you: cooking, language, crafts, hobbies, gardening, etc.
- Volunteer at your local church, school, animal shelters, veterinary office, hospital, or senior center
Do you feel your disability prevents or hinders you from participating in any of the above activities?
If you still feel socially disconnected, it may benefit you to seek the help of a social worker, therapist, disability advocate, clergy, or health coach. Simply sharing your concerns can help you to feel a greater sense of connection and community.
When we, as a supportive fibromyalgia community, share our feelings, frustrations, and hopes, we join in a collective experience. The result is a strengthened bond of understanding among us as well as creating a unified voice to share in the world.
people when they feel seen, heard, and valued;
when they can give and receive without judgment;
and when they derive sustenance and strength
from the relationship.”
~ Brene’ Brown~
- Loneliness ‘may affect the immune system’
- The Lethality of Loneliness
- Prescription for living longer: Spend less time alone
- The Lethality of Loneliness
Sue Ingebretson is the Natural Healing Editor for ProHealth.com as well as a frequent contributor to ProHealth’s Fibromyalgia site. She’s an Amazon best-selling author, speaker, and workshop leader. Additionally, Sue is an Integrative Nutrition & Health Coach, a Certified Nutritional Therapist, a Master NLP Practitioner, and the director of program development for the Fibromyalgia and Chronic Pain Center at California State University, Fullerton. You can find out more and contact Sue at www.RebuildingWellness.com.
Would you like to find out more about the effects of STRESS on your body? Download Sue’s free Is Stress Making You Sick? guide and discover your own Stress Profile by taking the surveys provided in this detailed 23-page report.