How older, chronically ill folks can help younger ones by Missy Milton

Age specific tools for managing chronic illness

I’m no expert in the field of chronic illness. Nor am I any type of medical professional. However, I AM an older adult with eighteen years of experience in dealing firsthand with a chronic illness (dysautonomia). I’ve been asked to share my experiences, observations, and opinions. I’m happy to do so in case any of it may help someone else.

In my opinion, when it comes to having a chronic illness it matters where you are located in your Life Cycle. By that, I mean that your current place in your “Life Timeline” (childhood, young adulthood, middle age, older age) is a factor that impacts how you experience and cope with your chronic illness. Each phase we go through in Life can provide us with age-specific tools that may serve us in good stead during a major upheaval. I base this personal opinion on my own first-hand experiences as well as upon my observations of younger people I personally know who have a chronic illness.

There are probably advantages (and disadvantages) to being in each age group when it comes to experiencing a chronic illness. I am, of course, more familiar with the advantages of being middle-aged and older-aged during a chronic illness because I didn’t begin experiencing mine until I was 40 years old. It didn’t severely disable me until I was 56 years old. I have thus lived the experience of being challenged by chronic illness later in life.

One observation I would make is that by age 40 I had experienced many of Life’s ups and downs. We all experience at least some of them: Love, rejection, marriage, divorce, birth, death, the thrill of getting that new job we wanted, the melancholy of leaving an old job where we had good friends, happy beginnings, sad endings, etc. By the time I became seriously ill, some of my own Life “ups” had been magnificently exhilarating. Some of my Life “downs” had been the scorched earth variety of devastating. However, both the ups and the downs carried value because I had learned important lessons from each. For purposes of later managing what was  to become my chronic illness the downs arguably contained the most important lessons because, if you think about it, our most profoundly sad Life experiences involve loss and the Life Lessons of how to cope with it.

Knowing how to cope with loss and to already have strategies in place for dealing with it when it comes knocking can be an extremely valuable tool to have in one’s toolbox. This is particularly true when one begins dealing with the loss of the life one had as a healthy person. In my opinion, a person like me who experiences the onset of chronic illness later in life may well have this valuable tool available in their coping toolbox.

Another difference appears applicable to those of us who do not become chronically ill until middle age: In my case, by that stage in my Life Cycle I (like most of us) had not only had the experience of one or more Life losses, I had also survived those losses. There’s a certain self-confidence born of surviving a bad experience or loss. Once we’ve survived one bad experience or loss, lesser bad experiences and smaller losses can seem less daunting. We now have a measuring stick (the terrible experience we survived) against which to measure subsequent bad experiences. Speaking for myself, younger me didn’t typically have the self-assured attitude enjoyed by older me of “I’ve survived some pretty terrible losses in the past. I, therefore, KNOW I can survive this.” Older me is more serene in the knowledge that if past losses haven’t defeated me, new losses certainly won’t either. This provides an additional tool for the coping toolbox that we can employ in managing the onset of a chronic illness.

I have also realized that experiencing the onset of chronic illness later in life has meant that I had previously had the opportunity to experience many major life events as a healthy individual. In my case, prior to being stricken with a serious illness, I had already had an opportunity to pursue my dream of putting myself through college and law school. I had likewise had an opportunity to experience marriage and to have my babies. I had successfully pursued a career I enjoyed and had even achieved what was for me my ultimate Dream Job. I had also learned to ballroom dance and to excel in a sport I enjoyed.

Although many of us with chronic illness will naturally grieve the loss of the more physically capable life we have left behind, I did not experience a sense of having “everything” taken away from me when I became disabled at an older age. This is because I had already had a chance to pursue some goals which had felt important to me and to live some Life while enjoying good health. I had gotten to DO some things I had wanted to do. Not to sound trite, but as an older person, I was able to fully appreciate the Dr. Seuss saying of “Don’t cry because it’s over. Smile because it happened.” This has been another useful coping tool for the chronic illness management toolbox.

As an older person, I had also had the opportunity to get to know myself pretty well by the time my onset of chronic illness occurred. I know my individual quirks. For example, younger me wouldn’t know (as older me does) that if I silently engage in artistic, creative endeavors for a few hours, it will help calm me down if I’m feeling upset. As with many older people, I thus have tried, and true coping mechanisms I know will see me through challenging times. Older me knows just what to do to soothe my soul when I’m feeling battered by Life. This is another tool in the coping toolbox which is arguably “age group specific.”

In my opinion, all of these factors add up in such as way as to provide inherent age group specific tools for those of us who are older when we cope with the onset of disability and chronic illness management.

Younger people likewise arguably have age group specific tools in their coping toolboxes. Although I do not have firsthand, personal experience with such tools (since my onset of chronic illness occurred later in life), I have observed them in young adults and children I know. For example, teenagers and younger adults may be better connected with their people. This is because they are arguably more likely than we older people to communicate frequently with others through computer and smartphone technology. Such technology enables a physically limited person to “stay connected.” with others 24/7 if they’d wish.

Teenagers and younger adults also possess an online savvy which may additionally provide an enhanced ability to research and better understand the nuances of their medical conditions. Such research capabilities may provide a person with a better sense of control over the situation. They may also be more predisposed to take advantage of online support groups.

A teenager or young child may be more likely to have a built-in support system of family living under the same roof to assist them that an older individual may or may not have. This can be an extremely important tool in one’s toolbox, especially if the family proactively helps the teenager or child prepare for adulthood by ensuring he or she learns about appropriate assistive devices and management strategies. Any medical provider worth their salt will tell you that when it comes to treating medical illness, children are not simply smaller adults, women are not simply smaller men, and the elderly are simply younger adults with gray hair. What we can easily lose sight of is a corollary to that: The day to day coping strategies for (and management of) one’s chronic illness can likewise be very different experiences for these individual groups as well… especially with regard to where we are in our Life Cycles. Each age group brings its inherent situational strengths to the table in coping with chronic illness.

It seems to me that if we of different age groups can find a way to proactively reach out to one another as mentors, all of us will benefit. If there were an organization to facilitate and coordinate such mentoring, in my opinion, the quality of many lives would likely be improved.

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