The Vulnerability of Severe and Chronic Illness

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By Erin Sesemann, Ph.D., LMFT, CBIS – People living with severe and chronic illness often express that they struggle to cope and adjust to the unexpected, ever-changing landscape of their health. Many of you shared your own stories of struggle in the 2017 report by Pituitary World News (read the results here). You described that your future feels uncertain because it can take 8-10 years to find an accurate diagnosis. You reported there is a heavy emotional toll of living with unexplained fatigue, brain fog, depression, or anxiety. You mentioned repeatedly taking the risk to share your symptoms with your healthcare team and family without the guarantee they would understand your reality.

Did you know that all this time when you were facing uncertainty, risk, and emotional exposure that you were living with vulnerability? Did you know that the very definition of vulnerability is to live with uncertainty, risk, and emotional exposure?

I bring vulnerability to the conversation because of how important it is to our well-being. Brené Brown, Ph.D., LCSW’s research on vulnerability shows us that avoiding or fighting against feeling vulnerable can lead to disconnection, numbing, self-medicating, and a host of other complications (for example, overspending or overeating). The coping strategies we use to avoid or fight against vulnerability come from a strong desire to protect ourselves, but unfortunately, often end up making us feel worse in the long term. On the other hand, we can better access joy, love, and connection if we allow ourselves to build skills at embracing vulnerability in our everyday lives. We can benefit from this lifestyle even when we are struggling with severe and chronic illnesses.

What Gets in the Way of Vulnerability? In situations with our health, it can be downright uncomfortable, intimidating, and frightening to face the uncertainty, risk, and emotional exposure of vulnerability. To cope with this discomfort and fear, the research shows that some people naturally armor up against vulnerability. To protect against feeling uncertain, at-risk, or emotionally exposed, people fortify their defenses against the world by “preparing for battle,” such as blaming, shaming, perfecting, or criticizing. People also isolate, overwork, micromanage, withhold affection, or lash out at other people. This can take a toll on your relationships, including with your parents, children, spouse/significant other, siblings, friends, work colleagues, healthcare team, and even on your relationship with yourself.

Example of Armoring Up Response:

Question: Do you want to go shopping today?

Criticizing Response: You never pay attention to me. Can’t you see I feel terrible? No, I am not going shopping today (eye roll).

How Do I Embrace Vulnerability?  If you see some of the armoring up coping strategies listed above in yourself (or someone close to you), then it might be the right time to ask the hard questions about how you (or they) are coping with health concerns.

Examples of Hard Questions:

    • What does it mean for you to armor up or self-protect against uncertainty, risk, and emotional exposure when it comes to your health?
    • How do the actions, thoughts, or emotions that you use to self-protect affect the people you love?
    • How can you respond differently to your health to feel more compassion, love, joy, and connection in your life?

It can be scary to examine your own actions, thoughts, and emotions, but it can also be liberating. You will have better access to compassion, love, joy, and thus connection by building the skills that will help you embrace vulnerability in uncertain, risky, and emotionally exposing situations. Brené Brown’s early research focused on investigating what skills people showed when they embraced vulnerability. She developed the 10 Guideposts of Wholehearted Living that provides a how-to introduction on embracing vulnerability (for example, authenticity, gratitude, rest & play, calm & stillness, laughter, song, and dance; see more at https://brenebrown.com/thegifts-hub/). Cultivating the skills to embrace vulnerability can help improve the quality of your life and relationships, even while physical symptoms persist.

Example Vulnerable Response:

Question: Do you want to go shopping today?

Authentic Response with Gratitude: Not today. I feel really bad today, actually, and it’s all I can do to move from my bed to the couch. I need to rest today. I appreciate the offer and hope you have a good time.

How Can I Learn More? The journey to embracing vulnerability when it comes to coping with your health is rarely easy, but it is often worth it. There are resources available if you would like to start the journey. You can learn more about Brené Brown’s research and writings on vulnerability through her website (https://brenebrown.com/), books (https://brenebrown.com/books-audio/), or podcasts (https://brenebrown.com/podcasts/). It might also be beneficial to seek help and support from a qualified mental health professional while you face the difficult, worthwhile journey of embracing the vulnerability of severe and chronic illness.

 

Erin Sesemann, Ph.D., LMFT, CBIS is a medical family therapist currently located in Greenville, North Carolina. She specializes in working with individuals, couples, and families who are affected by illness or injury (for example, TBI, SCI, stroke, amputation). Her professional experiences include working with families in community clinics, private practice, primary care clinics, and hospital settings. When not in the office, she enjoys writing, hiking, working on jigsaw puzzles, and spending time with family and friends. You can contact Dr. Erin Sesemann at erin.sesemann@vidanthealth.com.

© 2021, Pituitary World News. All rights reserved.

3 COMMENTS

  1. What about just wanting the medical profession to hear us? What about during that time, people say you are fat, lazy maybe even crazy? What about Exercising, dieting, fighting through fatigue, and just gaining weight, getting more tired and some days just wanting to give up.
    My husband called me his Warrior, he knew that I was losing the war.
    We found a counselor, I copied everything I could about Cushing’s, all of our friends knew that I had tumor and I was going to have it taken out. We also told them I wasn’t going to be well in a week or in a month. This would all take time. I ask my adult children to come to my appointments. I brought them to the surgeons so they could ask question. I asked for time alone and than ask for them to come over with children, dogs and food. Spend time with their father and if I felt like it I would open the bedroom door and turn on the light.
    During the day, I had my Grandson read me stories. Dogs fall asleep at the end of my bed and long Conversations, one to one with my adult children. Nicest part is they all took part in cleaning up, taking the trash and giving me a kiss and a smile on the way out.
    I am four years from surgery, no more cushing’s for now, hopefully never. I lost the weight, had two knee replacements and am biking 45 minutes 6 days a week. My husband does the Grocery shopping and cooking. My kids come over and have fun in our kitchen and then clean up. And I have never been closer to my family than now. No, I would never have wanted those 8 years. Yet, I smile and know we as a family will be strong, our plan is in order and we will fight together. I never ever ever dreamed that this is were I would be today.

  2. What I find most of all, is the lack of recognition of the neurological effects of our hormone systems. For example, I over exerted myself yesterday and depleted my cortisol a bit too much, and my system started producing a bit of adrenaline to keep going.. hat of course has an impact on behaviours, particularly aggression with adrenaline. All hormones seem to have an impact on our mental health, depression associated with low testosterone is sometimes recognised, depression due to low thyroid function is far more likely to trigger suicide yet is rarely addressed as low thyroid and antidepressantsare inappropriately prescribed rather than raise T3 levels. Low cortisol has its own effects and limits the effects of T3 so you can get multiple mental health issues. Then there are the socialisation hormones that are also often ignored but essential to help us interact with others, each has a slightly different effect on our ability to socially interact again neurological effects of hormone exceed or deficiency is rarely addressed. While a little ntrospection and good psychological management techniques can help manage our behaviours, propper treatment of the hormonal issues goes much further than cognitive management techniques.

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