Isolation and Loss from Chronic Illness


I’ve been feeling rather sad and isolated the last few days. I think a lot of it comes from the stress of dealing with chronic illness and chronic pain. Anyone who has chronic illness is probably familiar with spoon theory, an illustrative way to describe why you have to choose carefully how to use your energy to do things when you have very limited physical ability.

In other words, sometimes you have to choose whether you would like to go out and socialize for a short period of time, spend that energy getting some much-needed housework done, work on a hobby or personal interest, or even simply take a shower…because you just don’t have the energy and the physical ability to do them all within the same day like a healthy person could.

Most of the time I end up choosing to spend my “energy” and limited abilities to either spend time with my husband, work on my art/writing/blogging, or take care of personal hygiene or light housework. Prioritizing these things leaves no extra energy or time to socialize on a wider scale or do much outside of the house, other than maybe occasionally going out for dinner or doing a little necessary shopping. Even the thought of going to a movie is often too exhausting to contemplate.

All of this makes me sad, especially when I remember how I used to enjoy so many other things I can’t do any longer. I used to love hiking, playing tennis, roller skating, bowling, dancing, working, swimming, being a foster parent, and going out to various activities with people I know or share interests with. I’ve pretty much lost all of that for good. And that is depressing.

Love – in theory and practice

Maybe I have read too many near-death experiences or just have too much time on my hands, but I often think about the end of my life and how I will feel if I undergo a life review. While pondering, I start to wonder if the life review would make me regret some of the things I did? Or will I regret even more some of the things I could have done but didn’t do? I start to wonder about what will really matter at the end. Of course, most of the time I come down to the same answer…

LOVE – the “real” purpose in life.

Not fame. Not money. Not being highly educated. Not being praised and appreciated. Not work. Not play. Not fulfilling our ego. Not collecting things. Not being the “best” at something. Not being perfect. Not wallowing in self-pity. Not being “right”. Not being super-religious. Not even being “happy”.

In the end, nothing but love really matters. Not the ooey-gooey, tingly feelings of budding romance, but real, true, nitty-gritty love – the kind that seeps past your bones into your very soul and gives you the will to go on when all else fails.

The hard part is that love like that is hard to find and even harder to give away on a consistent basis. To give that kind of love to others you have to overcome the all-consuming self-interest that most of us struggle with. You have to REALLY be willing to sacrifice and give yourself to others. This kind of selfless love can be hard to give to your family, let alone to strangers. Most of us prefer to focus on the theories and philosophy of love, rather than the actual practice. It is easier and safer to stay in our heads and look logically at love, but real love can’t be analyzed and figured out…it can only be given away. I know that I often need a reminder of that fact, so I figured maybe others could use one too.