My dad, a fit, active, and adventuresome man, announced that for his sixtieth birthday he wanted to hike Mt. Kilimanjaro and he wanted his kids to do it with him. So, the August I was 36 years old, we flew to Tanzania and started our six-day journey to the highest peak on the continent of Africa at 19,341 feet, led by our charismatic guide, Dismas. Much to our dismay, Dismas insisted that we shuffle up the mountain, frequently shouting to us, “pole, pole,” or Swahili for “slowly, slowly.” All six of us made it to the summit by simply putting one foot in front of the other, slowly, slowly, and I embraced a life lesson that would prove to be invaluable as I soon faced a challenge that was even harder than summiting Mt. Kilimanjaro.
“Pole, pole,” or Swahili for “slowly, slowly.”
Six months later, I was diagnosed with Multiple Sclerosis. I lost most strength and sensation on my left side, and I went from feeling strong and capable to weak and helpless; I had summited the highest mountain on the continent of Africa and now I couldn’t even get up a single flight of stairs! It was difficult to reconcile these conflicting self-concepts. Further, I was frightened about my future. Would I be able to do the things I loved again? How would this affect my children, who were then eight and ten? Did other people, including my husband, see me differently than before? This period in my life was fraught with loss. I literally lost my ability to do things. I had a hard time cutting my food or opening the tab of a drink can, and I certainly wasn’t able to do the physical activities I loved, like hiking or riding my bike. But of more significance, I lost my sense of self. I wasn’t sure who I was anymore.
Chronic illness diminishes self, it disrupts one’s personal narrative, it distorts power, control and intimacy, and it narrows one’s domains. Together, these impacts lead to an overall loss of self, or a change in who we think we are and how we are experienced by others. Further, a person who has a firm sense of who they are is more likely to fully experience loss of self. More specifically, loss related to chronic illness describes “the loss of a person as they once were (Weingarten, 2013, p. 86).”
This explanation of loss related to chronic illness resonates with me because it describes the loss I experienced. I was diminished because I could no longer do certain things, and I felt less capable and more dependent. MS disrupted my personal narrative as a strong, physically active person; the stark contrast of having just summited Kilimanjaro definitely made this all the more significant. My sense of power and control was hugely disrupted; up to that point I believed I could control my life by simply willing it to be a certain way. Intimacy was a problem for me as I had difficulty talking about my feelings; if I couldn’t be physically strong at least I could appear to be mentally strong, and I wanted to protect my family from more worry about me. My domains had been narrowed; I wasn’t participating in many of my normal activities, like walking with a group of women, and I didn’t want to go to social events because I didn’t want people feeling sorry for me. Simply put, I was no longer the person I once was.
Chronic illness can lead to stress and anxiety with long term psychological and physical impact, called post-traumatic stress.
Interestingly, loss, defined as “negative events and their sequalae” is identified as the opposite of growth, or “positive transformation,” and growth is a buffer against post-traumatic stress. Further, loss and growth can occur simultaneously in the face of chronic illness, though they are independent of one another (Gloub, Gamarel, & Rendina, 2014).
I definitely experienced both loss and growth simultaneously. I felt great loss surrounding my new physical limitations while at the same time experiencing growth related to my ability to cope and adapt. I began to value myself as mentally strong versus physically strong. This helped me regain a sense of power and control and develop a new self-concept, and eventually to see my new self-concept in a positive light. And, as I felt more positive about myself, despite not being the same person I once was, I began to experience my physical symptoms differently. This is not unusual; the less self-loss a person experiences, the fewer physical symptoms they report (Gloub et al., 2014). The post-traumatic growth I experienced served as a buffer for me and decreased further loss of self.
I read an opinion piece from NBC news about John McCain’s death that is relevant to thinking about trauma and loss and chronic illness; the author (Baig, 2018) takes issue with people using what he calls martial language to describe how people manage illness. He says, “McCain did not lose his battle with cancer – because cancer is not war.” He believes statements like these suggest that death from illness is a personal failure. I absolutely agree. In reality, there is little to no correlation between what Baig calls a “fighting spirit” to recovering from cancer and other chronic illnesses; sometimes in life you are just dealt a bad hand.
I remember when I was first diagnosed with MS, people told me I would be all right because I had such a positive attitude. I would think, “Well, I have always had a positive attitude and it didn’t prevent me from getting MS in the first place.” Then I would wonder if people would think it was my fault if I didn’t do well, and it made it even more difficult for me to talk honestly about how I was feeling.
As a therapist, I think it especially important to choose language carefully so that in no way do we imply that it is our client’s responsibility to “beat” an illness.
While I understand the value of a good metaphor, this is one I will avoid so to never mistakenly engage in what can feel a lot like victim blaming.
As some of my friends predicted, I have done all right, but not just because I willed it to be so. Rather, I had lots of social support and access to high quality health care. I started injecting interferon immediately – a drug that costs my insurance company about $80,000 per year – as well as taking good care of my body. I began seeing a therapist. I started physical therapy. I started going to the climbing gym because it seemed like a good way to regain strength on both sides of my body. And, I am sure that my positive attitude helped me cope with my disease even if it didn’t cure it.
I wish I could have known then what I know now. I have regained most of my strength and many days I don’t have any MS symptoms at all, and I live an active and healthy life. I feel more resilient and competent and well-rounded, and I know I am physically and mentally tough. I also know how much I drew from my experience hiking Kilimanjaro.
I learned that just like I was able to summit Mt. Kilimanjaro by going slowly, slowly I would also learn to adapt to MS, by simply putting one foot in front of the other. I had no idea that when I training to climb Mt. Kilimanjaro, I was also training for a different mountain altogether.
Baig, J. (29 August 2018). Opinion: John McCain did not “lose” his battle with glioblastoma – because cancer is not a war. NBC News. Retrieved from https://apple.news/AqCpbNypBR7G1Jup9XHbopA
Golub, S. A., Gamarel, K. E., & Rendina, H. J. (2014). Loss and growth: Identity processes with distinct and complementary impacts on well-being among those living with chronic illness. Psychology, Health & Medicine. 19 (5) 572-579.
Weingarten, K. (2013). The “cruel” radiance of what is”: Helping couples live with chronic illness. Family Process. 52 (1) 83-101.