Loss of connection is a hallmark of chronic illness.
Isolation is common.
Loneliness often follows.
Social relationships play a vital role in our overall well-being throughout our lives, yet many chronic illness patients have fewer relationships and little support.
While there have been many studies about the benefits of friendship for both young and old alike, as well as for those with chronic illnesses, much less is known about the impact of chronic illness on friendships.
One study from 2015 noted:
Other studies led to seemingly opposite conclusions.
“Some research suggested that the onset of a chronic health condition leads to reduced social engagement with friends (Ha, Kahng, & Choi, 2017; Sander, Schupp, & Richter, 2017), while other research suggested that crises can lead to an activation of social networks, resulting in a higher number of friends (Latham-Mintus, 2019).”
Not surprisingly, research found the type of health condition made a difference in terms of support, as well as the age of the person. Mid to late-aged women and older people seemed to fare better, and diseases such as cancer, and heart disease were more apt to elicit supportive networks.
Support matters
I began writing about my experience with chronic illness during the past three decades after speaking with hundreds of patients who were suffering in silence. So many shared frustrations with the lack of understanding of lesser-known, invisible conditions and the waning support common with a chronic condition.
Patients saw the rallies for those with cancer or ALS (bucket challenge) and wondered why they were being ostracized by their families and friends and dismissed by the medical community.
Many were not taken seriously when they presented with debilitating conditions and suffered for years while searching for answers. Support was often lacking in their life. Families were in tatters.
Having one person in your corner can make a world of difference.
Recently, a friend called to invite me for coffee. When I arrived at the local coffee shop, she surprised me with a beautiful floral arrangement and warm wishes for my birthday. It was a moment of unexpected joy and I felt truly blessed by her continued friendship.
For years I was either too ill to socialize or I was not included given my propensity to cancel. But those instances didn’t mean I was less interested or needed connection any less than the next person.
Being asked to meet for coffee or having someone remember your birthday may be insignificant to the average healthy person. But for someone whose illness has taken a major toll on nearly every relationship in their life, those gestures are far more important and relevant.
Feeling supported is critical to someone with a chronic illness.
We know relationships can be challenging in the best of times when both parties are healthy. Add a limiting condition for one and it can be tough to keep the relationship going.
Chronic illness disrupts connections.
Keeping meaningful relationships on track requires work from both parties.
The person with the illness must be open about what they need, what they can or can’t do, and willing to share expectations.
The other party must also understand what works, what doesn’t, and why. They should be interested in the patient’s condition, even if they don’t understand it.
Compromise, compassion, and understanding are the basic tenets of any healthy relationship. Chronic illness doesn’t change that.
Barriers to relationships
When you’re healthy, the opportunities to make friends are endless. You may enjoy frequent social interactions with different groups of people and look forward to various future events.
When chronically ill, the opportunities to connect with others are few and far between.
Social interactions may be limited.
Planning future events may seem fruitless.
How did my illness affect new relationships?
After college, I maintained many close friendships and developed new ones with co-workers and colleagues. I traveled frequently for work and pleasure.
I spent little time alone.
That all changed when I unexpectedly became ill at 26.
I did my best to stay connected, but I had no energy, terrible brain fog, a host of debilitating symptoms, and nothing to share.
My friends didn’t know what to say. Some felt helpless. Others were truly saddened by my change in circumstances but could not weather the storm. Illness makes many people uncomfortable for a variety of reasons.
Soon I had little in common with a group of people I once had been so close to. As my illness progressed I became even more isolated.
Adding to the isolation was the idea that I had done something to deserve my illness. I blamed myself. Being dismissed and ignored by the medical community for years didn’t help. Insensitive comments from physicians and family members who lacked empathy or the desire to understand added to my feeling of inadequacy.
I felt unworthy on so many levels.
I didn’t know if I had it in me to be a good friend, so I withdrew further.
When my son began school many years later, my health was fragile. I had experienced several setbacks in the previous decade and I couldn’t afford another as I adjusted to being a single parent. I was extremely cautious with my energy and my time.
Developing new relationships requires a great deal of energy, and energy was always lacking. Most chronic illness patients work hard to maintain a delicate balance between activity and rest, carefully planning ways to eliminate a potential relapse. Pushing the envelope one day could mean disaster for a week or more.
But just as my son had the chance to make new friends at school, I too had an opportunity to develop relationships with other parents of children the same age.
I knew the type of friend I wanted to be but my illness and the years of isolation had changed how I interacted with others.
I was more reserved.
I was more anxious in social situations.
I was less self-confident.
I was less trusting of others.
During the last year of my marriage, I was regularly reminded of my ‘less than’ status.
Less able to be the wife, mother, and stepparent I should have been.
Less able to contribute financially.
Less able to manage the many tasks I previously handled with ease.
This less-than-feeling had infiltrated every aspect of my life.
The concern about letting people down was always top of mind, along with the limitations of my illness. Overcoming these deep-rooted feelings was a monumental task.
One thing kept me going at the time - the desire to make life as normal as possible for my son, despite my health condition. He didn’t know the difference between well and sick and I was determined to give him the best of me.
Maintaining some semblance of normalcy was a driving force in developing new relationships while working to maintain the few close friendships I still enjoyed. My world had become very small due to a prolonged illness and divorce and I knew the importance of new connections.
Assembling the pieces
Chronic illness has a way of stripping away the layers that make you who you are, leaving shredded remnants behind. I worked at reattaching those remnants, piece by piece until I felt whole again.
In the process, friends reminded me I had something to give even if the reconstructed version was far different than the original.
They helped me to trust again and believe it’s possible to maintain close relationships despite a chronic illness.
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Thank you.🙏 You might enjoy watching this recent episode I posted on the same subject:
https://open.substack.com/pub/unfixed/p/sex-hugs-and-the-chronic-toll?r=3lmmp&utm_campaign=post&utm_medium=web
Lots of parallels between that and special needs parenting