By Elena Rosen
Note: Elena Rosen is a CFS patient from Vermont and a course leader in the CFIDS and Fibromyalgia Self-Help Program. Her other articles include one on reducing stress and one on how she improved using short-term goals.
One of the biggest challenges I've faced with CFS is re-learning how to maintain healthy relationships while living with a chronic illness. All of my relationships from my family to close friends, even casual acquaintances have been affected by my CFS.
Whether it's struggling to feel understood, maintaining boundaries, letting go of unsustainable relationships or figuring out how to handle causal social encounters, I've changed my behavior and attitudes in order to maintain nourishing relationships.
Not feeling understood is a big challenge I've faced with my relationships since being diagnosed with CFS. One way I've dealt with this is by letting go of the expectation that my friends and family, who are mostly in good health, will be able to understand every aspect of my illness.
Everyone I'm close to understands as much as they are able. My mom had a bad head injury when I was a baby and can identify with some of my brain fog symptoms. My best friend had mononucleosis and understands what the fatigue is like to a certain extent.
None of them have ever had to live with anything as all encompassing CFS, but they have all faced different health problems that allow them to relate to part of what I'm going through. Each one of those little bits of understanding adds up and is enough for me. Ultimately, I don't ask that my loved ones totally understand my CFS; I just ask that they respect the complexity that comes with living with a chronic illness and the limits I communicate to them.
Boundaries With Loved Ones
Another part of not feeling understood I've had to deal with is the fact that sometimes my loved ones don't want to understand exactly how I'm feeling. It's very difficult for them to see me be in pain or struggle with exhaustion. Sometimes they just need to be able to turn a blind eye to me. I can appreciate their feelings, because I know how deeply it affects me when they are hurt.
Unfortunately because of this I sometimes put pressure on myself to act upbeat even when I'm feeling really miserable. It's a constant work in progress for me to maintain good boundaries and be more honest with my loved ones about how I'm feeling while letting them take responsibility for their own emotions.
Letting Go of Relationships
As I adjusted to living with CFS I began to recognize that there were some people in my life who simply weren't capable of adjusting to my illness. This has caused me to let some relationships go. My limited energy should be spent on relationships that are mutually beneficial and a few people in my life weren't capable of adapting to the limitations I have to live with.
After I got sick and my energy was so much scarcer, I realized that in some of my relationships I had been doing most of the work to keep us connected. Once I began living within my energy envelope, I found that I was no longer able to sustain these relationships without overextending myself.
Some people in my life adapted to my new limitations and our relationships continue. Some, for whatever reason, were unable to adjust and we gradually drifted apart.
I mourn for the friendships that have fallen away but I try not to resent or pass judgment on the people who haven't been able to keep up with our relationship through this chapter of my life. Everyone has there own emotional baggage and limitations. Sometimes in a relationship neither person can give enough to bridge the divide.
The eternal optimist in me holds out hope for these relationships. Perhaps in the future there will be a time when I'll be less limited or they are more available and we will be able to reconnect.
Handling Casual Relationships and Social Situations
As for people outside of my circle of family and loved ones, I try to be careful about how much I share. I've found that there can be a lot of difficulties in holding a conversation with someone who doesn't know much about my life with CFS.
One phrase that is always hard to hear is "you're looking well," especially when I'm not feeling well. People who don't understand CFS may not see the judgment and doubt that those words carry to someone with an invisible illness.
When someone says that I'm looking well, firstly I try to take it at face value and accept it as a simple compliment. Over time I've come to see that much of the censure and criticism I feel from others about my CFS is really self-generated.
So many of the judgments I feel from others are simply the vestiges of the insecurities that plagued me in the early days of having CFS. For the first year of my illness I grappled with a lot of self-doubt in the face of what looked like at the time, a wildly uncontrollable illness that I couldn't vanquish no matter how hard I tried.
When someone says to me "you're looking well," sometimes I think the person is saying to themselves "she looks perfectly healthy. I bet she isn't even sick; she's just lazy."
Even though everything I have learned in the self-help program has proven that negative thoughts like that are untrue, the ghosts of them still linger and tend to pop up when I'm feeling especially vulnerable (which is often how I feel when I'm trying to make small talk with someone who doesn't know my story).
I've gotten to the point where I'm secure enough that it doesn't throw me for a loop when these pernicious thoughts arise. I can just smile and talk back to them, saying "You have nothing to do with the life I'm currently living. I've utterly disproved you."
"What Have Your Been Up To?"
Another tricky question that comes up in conversations is the seemingly innocuous, "What have you been up to?" This is often coming from people I went to school with or their parents. I have to negotiate this terrain carefully in order to find the balance of protecting myself and still being polite.
The honest answer to this question is I have a full time job taking care of a person with a chronic illness (me!). However, my health is a private matter and I don't need to expose myself to undo scrutiny, especially not to someone whom I'm not close with.
While I don't like to lie, I do try to just skate around the question with an answer like "I'm living with my parents for the moment and I'm kind of in between things." While I miss being as open as I used to be in social situations, the reality of living with an invisible illness is that most people won't understand and protecting myself is more important than educating everyone I meet about CFS.
Ultimately in any kind of sticky social encounter I try to remember that these people have busy lives of their own and boatloads of insecurities of their own. Most of them aren't spending their days passing judgment on me.
The Bottom Line
By learning to see and be satisfied with the small pieces of understanding each relationship yields, setting good emotional boundaries, releasing relationships that are no longer sustainable, letting go of negative self talk and protecting myself in social situations I'm able to maintain healthy, nourishing relationships while living within my energy envelope.