Navigating difficult interactions with a chronic illness

The holidays are stressful for many people, but especially for the chronically ill. For those of us fortunate enough to have family members and friends still in our lives, the holidays can bring out paradoxical feelings of isolation, even when embedded within a family. Many of us have family members and friends who do not understand what we endure, or worse, do not believe that we are truly as sick we are. As a result, many chronically ill people have come to dread the holidays and other gatherings. Not surprisingly, many therapists suggest trying out newly-acquired emotional skills on strangers and friends before working up to family!

Face it, there is no amount of time on the cushion or the couch that allows us to transcend getting “triggered” or caught up in a difficult interaction. There are many reasons for this – unhealthy family dynamics that span decades are probably at or near the top of the list. We also tend to freeze family members in their juvenile state – I will forever be the vagabond globetrotting hippie of my youth to many, despite my accomplishments and growth since leaving home at age 18. Likewise, gatherings of family and friends can unwittingly put us back into our old roles, ones we developed to survive when we were younger. When these roles become reactivated it can seem like a never-ending loop of frustration and hurt feelings. How to break free from these patterns?

The adrenaline surge from stressful interactions is the kryptonite of people with ME/CFS.

Having a chronic illness makes interpersonal dynamics especially challenging because we often lack the reserves to be at our best. Stressful emotions are a major trigger for post-exertional malaise (PEM) in people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). PEM is the hallmark of ME/CFS and is a worsening of neuroimmune symptoms following exertion – whether it be physical, mental, or emotional. What might be easily brushed off by a healthy person, could land a person with ME/CFS in bed for days. When resilience is low, it is so much harder to cope with an insensitive statement, or worse, an altercation.

One of the hardest parts of being triggered is in becoming reactive. This might involve being angry or filled with rage, disappearing, collapsing into numbness, or acquiescing. When dealing with chronic illness, such energy output takes its toll. The adrenaline surge from stressful interactions is the kryptonite of people with ME/CFS.

Owning up to our own triggers and old roles is critical for re-engineering relationships. Ideally, both parties would show a willingness to engage in healthier patterns, but sadly you may find yourself alone in this endeavor. A little investment can help bring along others to a better place, hopefully improving your own situation by making family interactions less stressful.

One of the most effective tools for dealing with being triggered is to quickly find your center. Being centered involves being aware of your emotional state – are you angry? Sad? Frustrated? Anxious? From this centered place, it is far easier to remember some basic tools for navigating difficult interactions. The hardest part with triggers is recognizing you are triggered in the first place. Pema Chodron calls this Shenpa, or getting “hooked”. Sometimes we don’t realize it until we are several paragraphs into a conversation.

I have had two very gifted therapists over the past few years who have passed along the following tools to me for when I get hooked:

Slow it down: The biggest problem, as I see it, is being able to quickly get centered when triggered. Buying time is one of the best ways to get there. How to buy time?

  • Reflect back to the person who is triggering you. Simply restate what they just said. Something like, “So, you think that it would be such a good idea for me to try x, y, or z?” In the time it takes for you to restate something, it might provide you with time needed to collect yourself.
  • Pause and take a breath. Sometimes only a second or two is needed to get back to a centered place.
  • Being in your center is a way of holding your ground, not in anger, or defensiveness, but by residing in your “truth” – a.k.a. your core needs.

Show curiosity: Simply turn the tables by asking questions. People usually like to talk about themselves. This requires a little bit of thinking on your feet, but usually there is an angle that you can pursue. “Can you think of a time when you were really sick? Tell me more about that.” This might inspire the person you are with to show curiosity about you in a more authentic (and less judgmental) way. Showing curiosity is another way of slowing down for long enough to become more centered.

Deflect: Change the subject. This can be slightly trickier if the person who is triggering you catches on to what you are trying to do. This approach could wind up someone even more if not careful! Ideally, the deflection is not a complete non sequitur. Again, this requires some thinking on one’s feet, a skill which is easily be impaired when reserves are low. This is one I need to practice. When I feel trapped or sandbagged there is no amount of deflecting – sometimes I need to remove myself. If all else fails, point outside and yell, “Squirrel!”

Notice and invite: If the person triggering you also seems defensive (which is often the case), it can be very effective to very simply “name” the emotion they appear to be having. This serves to slow them down and find their own center. After naming the emotion, ask if they want to share a little more. Something like, “You seem really frustrated right now. Care to share what is bothering you”? Or, “You seem to be in despair. Can you tell me more about what has made you lose hope”? Here, the goal is to help someone soften just enough so that they can access what is truly bothering them. This can also helps to cultivate deeper connections.

Of course the really trying aspect of this is that it is often a one-way street. You may have the emotional intelligence to manage your triggers, but it is so hard when we have to carry others along with us. Often people are too caught up and oblivious. Still, it is worth trying to model what good interactions can look like. I fall down hard all the time with this, but at least I have the desire to get back up and try again.

Many of us have lost friends and family members since falling ill, making those who remain in our lives that much more important. Investing in these relationships seems well worth it.

In short, slow it down, get centered, get curious, and invite others to connect with their authentic emotions (vs. anxiety, defensiveness, etc.).

As my therapist likes to say, it is that simple and that hard.

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