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Changing family dynamics when chronic illness enters the equation

Carol Gray-Kelley, LCPC

When chronic illness enters the family home, all bets are off...

In the field of therapy, we often draw on Minuchin’s theory of Structural Family Therapy, in which he defined family structure as “the invisible set of functional demands that organizes the ways in which family members interact…Repeated transactions establish patterns of how, when, and to whom to relate.”

This definition helps us understand how a chronic illness can seriously disrupt the family system and the individuals within. When I have a client who presents with a new behavior of which they’re very proud, they are often confused about why no one in their family is applauding their efforts. This is very often someone who has learned to use their voice, or has made positive health changes, or gone back to school! How could their effort be wrong? And yet…the family system is least likely to appreciate this egregious ‘defying of the rules’ which have been established for years — albeit silently.

This can become a time to improve, rather than deteriorate, connection

Imagine the stress of such change when it is illness that alters interactions, resources, and boundaries! Double whammy. There are unspoken contracts in every relationship and in every system. If you stop to think about it, you follow these rules all the time. Maybe you took over trash duty years ago, yet every now and then you stand bewildered at how no one else seems to notice the overflow of garbage in the kitchen. That’s because you “agreed” to take on this task years ago, and no one is going to fight you for it!

When chronic illness enters the family home, all bets are off. Alliances that formerly felt strong can crumble. The assigned roles don’t apply anymore. The resources of the system are likely spent in new places. The search for new identity within the system is confusing for each individual, because no one even knows they had a “contract” to begin with. With new awareness, this can become a time to improve, rather than deteriorate, connection.

A few pointers follow, but remember that the key in all of this is communication. If you find you do not have a way to navigate this new level of communication, please seek the assistance of a mediator, life coach, non-violent communication course, or therapist. There may even be a natural resource in your extended family to facilitate how to talk with one another about what is changing.

1. Be aware

A lot of literature these days is about mindfulness. This skill is about beginning to pay attention — on purpose — in the present moment. Like a lot of these guidelines, this one requires diligence in ‘checking in.’ New habits are hard to form in times of crisis, so go easy on yourself. Non-judgement is equally as important. Be aware of what your unspoken contract in the family system has been up until this point. It will go a long way to let the system know where you cannot hold up your former role or responsibilities. See if you can delegate to another family member or seek assistance elsewhere. Be aware of your own angst in having to fill new shoes. For example, maybe you don’t willingly become the primary coordinator of services, but that is a strength you possess that another family member doesn’t. Consider the pros and cons of accepting this duty. Be aware of what comes up. This prevents future resentments and negative stories about being ‘stuck’ with responsibility you didn’t want.

2. Ask permission

The person who is ill is going to experience a serious change in privacy, freedom, and function, among other things. Ask permission when you are aware that boundaries are changing. While being ill necessitates a lot of helpers, it is occurring amongst significant loss and adjustment for the person who is ill. This will naturally kick in some self-image changes, goal adjustments, and anger. Asking permission helps a person who is vulnerable to maintain a sense of self determination in the midst of an unchosen compromise.

What kinds of permission are we asking about? There are multiple forms of boundaries: Physical, Emotional, Spiritual, and Mental. These boundaries are what help each of us define our individual selves within the context of relationships. They are the things we can and cannot do and stay comfortable and healthy. Often, with chronic illness, we are stretched to accept intrusions on these boundaries through various channels. Some examples might be taking phone calls late at night, being asked for information that would previously be seen as “private,” sharing space with non-intimate others. The key is to know what the “rules” were before illness set in and what they have transformed into, so there is an ability to ask for what is tolerable for not only the person with chronic illness, but also for the family members.

3. Ask what is helpful

While we may feel we are being helpful, we can often approach others from our own style of needing support. In other words, we may really like gifts, so we bring a gift to someone who is struggling and assume they will feel supported. There are many ways, however, that we give and receive support, such as through words or affection, or time spent together. Some people want to be alone and some want our company. Maybe we want both, but on different days. Asking what is helpful for that person at that time keeps it simpler, and allows us to feel effective.

4. Check in

Get together as a unit, if possible, and ask questions. Be curious about how every member of the family is doing with the changes. Find out what helps each individual feel appreciated and loved. Focus on strengths in each other. Say ‘Thank you.”

This is a good time to figure out what team-building looks like for your family. Make sure to carve out time for levity, if possible. Make new rituals. Get creative. In the end, we mostly need to know we belong, are connected, and have each other’s backs. As hard as this journey is, it really kicks the need for this sense of connection to the surface for us to experience.

5. Keep yourself healthy

The basics are most important here: Sleep, Good Nutrition, Hydration, Movement. Though every day may not provide these for you, count each time you can achieve them as a success!! This is a marathon and not a sprint, so you can’t give it all you have right up front. Keep your energy as available as possible by practicing self-care. Times of crisis are often the exception, but whatever you can do to keep your body healthy, please do it. Ask for help. Get outside. Do whatever keeps you grounded and connected to your source of inspiration.

6. Focus on the parts

Within each family there are many ‘dyads’. These are the units of two that interact, such as parent-child, child-child, parent-parent, etc. Notice what illness and the dynamics of it have altered in each dyad. Talk about it. Make it a point to maintain the dyads within the family where healthy. Sometimes there may be alliances that are unhealthy which are broken as a result of illness. Though that may seem like a blessing, talk about that, too. It is this consciousness that will keep the positive connections building, despite the challenge of illness. If there are dyads that need strengthening, see if you can facilitate this process through play, side by side enjoyment of an activity, learning a new skill, or seeking therapy if needed.

7. It’s not easy

Creating new habits in times of stress can be like asking birds to fly while caged. Again, non-judgment is essential. If these suggestions are a lot to take in, just know that when the time is right for you to practice, it will be here. For now, just be aware of what keeps you getting out of bed, joining the world, and moving forward. Stay aware as you can. Receive where you can. Be gentle with yourself. You are amazing.

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