Posted By: Patient Advocate Summer Katz, M.A., NCC, LMHC
Many people with chronic medical conditions are required to take ongoing medications, complete prescribed treatments and may at some point receive a higher level of healthcare intervention (such as going into the hospital or undergoing a specific procedure). Living a life with all of these complications means that we have no choice but to figure out how to get through it; to cope or to merely survive. With everything that is on our plate, how do we ultimately advocate for exactly what we need? Our health? Our happiness?
Having studied the impact of psychological trauma (an emotional response to a terrible event), I certainly consider factors such as chronic or unresolved illness and loss to fall into the category of trauma. I believe we all, as human beings, experience loss and limitation on a regular basis. Add the complication of illness and chronic medical need to the continuous stressors of life and the symptoms of anxiety and depression due to loss may certainly be enhanced.
This means that we are essentially grieving… grieving the loss of a desired life, the loss of the life we used to have, or the loss of a life which we may ultimately never have. This concept could then impede our ability to participate in healthy coping; impacting our ability to make positive, independent, confident, and compliant effort.
How do we make this positive mental and behavioral effort when it seems that we have to undergo so much physical and emotional negativity? How do we become positive advocates for ourselves when we are uncertain about whether receiving the desired outcome will actually come true? Maybe we should look at our lives as if we are the experts.
If we are the experts, this first thing to acknowledge is that each of us is going to have a different mental and emotional response to our situational outcomes, based on our own views and values, as well as life experiences and that is absolutely normal and valid. So, to cope with our ongoing, as well as situational stressors related to the never-ending medication and treatment needs – remember, we can give ourselves permission to be human and live life with our defined flaws.
To move forward, despite our flaws, we need to take advantage of opportunities to redefine our lives / our existence / our outcomes with personal acknowledgment, appreciation, approval and acceptance of our being. These 4 A’s (as I refer to them), are ultimately what we desire (for ourselves and certainly from others), but we may not always be pursuing it successfully. When we are not getting these needs met, we often default back to reactionary coping (avoiding or acting-out; internalizing or blaming). The goal then is to change the reactionary coping by re-defining what and how we ideally want to be within each given circumstance.
In order to redefine our experience, I’d like to review the concept of we get to choose. We are ultimately choosing the benefit and/or consequence of our actions constantly. However, the irony in this is that we may not always be aware of our choice. This is merely because we may actually rely on immediate gratification.
This notion is generally applied to children and adolescents, however, it is certainly the case as any of us participate in distractions to cope (for example: watching TV, reading a book, going for a run, listening to music, etc.) because choosing these things can be easily more enjoyable and gratifying than following through on the responsibilities, obligations or routine tasks of the day, such as the prescribed medication or treatment regimen. Engaging in the distractions is not all bad, certainly as we utilize these options as a means of participating in me-time or self care needs.
The caveat essentially becomes: How do we practice balance or navigation of the satisfying me-time activities with making sure that we are actually taking care of our well-rounded health needs? What about the concept to enjoy in moderation? This phrase can be a helpful reminder to engage in choice as well as distraction with improved acknowledgment of the effort that we make. It is important to consider our decisions as beneficial, healthy, rationale, or unfortunately not – based on any recognition that we are over or under indulging in the ideal version of ourselves.
Living healthy lives does not mean that it has to completely be up to us as individual people to get it all done on our own, but to engage in healthy use of boundaries and assertiveness with others in our support system. Again, this is where advocating for what we need is essential. We can ask for help, request support, and identify what we think and feel is important to pursuing the best version of ourselves.
So, whether you are desiring balance in your family support system, or you are seeking additional information and education during your healthcare visit at the doctor’s office – take a breath, think about what you need, and “say what you need to say” to advocate for the healthiest version of you.
*Disclaimer: This blog is provided for informational purposes only (including brief topic exploration or reflection) and should not be used as a substitute for professional mental health or medical treatment. This is not an endorsement by Cystic Fibrosis & Freedom Pharmacies of the text nor videos in this blog post.