When you have a chronic illness it can feel like you’re repeatedly experiencing loss. Loss of ability, loss of energy, loss of identity, loss of sexuality, loss of fun and recreation, loss of friendship, loss of love and so on.
This experience of loss can come and go with flare ups and good days.
Just when you start making gains in energy and your symptoms seem to be decreasing, becoming more tolerable or almost non-existent, a flare up can come along and wipe all that sense of progress out. For those of you who are reading this and don’t have a chronic Illness or chronic pain, here’s an analogy that might help you better relate with how poor health can disrupt your sense of normalcy and put you in a cycle of experiencing loss. Think about a time when you had a cold and you did everything in your power to recover from it. You didn’t ask for the cold. Remember how much you ached all over, how exhausted you were but how hard it was to sleep because everything hurt. Recall how little energy you had to socialize, clean the house, engage in things you love to do, go out with friends, have sex with your partner and how gross and unattractive you felt.
Think about all the things you did to get better- all the rest, medications, soup etc.
Now remember how great it felt when after all your efforts, you woke up one day and the cold was gone. You returned to work. You started making plans with friends, you got back to your regular activities and hobbies, you started feeling a little bit better about yourself in general and all felt well again. Now imagine that 5 days later the cold comes back or you pick up some other bug that’s going around. A common response to this is: “But I did everything right? Why am I sick again.”
Now you got to call in sick again, cancel your plans with friends and put all your regular activities on hold until you get better. You’re feeling frustrated with your inability to get better but to top if off, people are starting to say “You’re sick again. Really?” Your boss and co-workers are starting to wonder if you’re a flake and start suggesting that you must be doing something wrong to end up sick again. They start giving you all kinds of advice about how to get better, most of which you’ve already tried (although not my boss and co-workers because they’re exceptionally awesome, compassionate, lovely people).
This is an experience most adults have had at some point in their life (unless you have some kind of rare, superior immune system)
But for most people there’s an end to this cycle of sickness. But imagine it went on for years and years over and over and over again. Can you?
This is what having a chronic Illness and/or chronic pain is like.
Just when you think you’re getting better and start diving back into your regular life, you are thrust back into being sick again and having to restructure your life or put many aspects of it on hold.
So, how do I handle that cycle? It was really hard for me for long time but one thing became clear to me: I was tired of grieving my losses. I just couldn’t do it anymore. The first thing I did when I hit this point was I created a list of the positive things I’ve gained from having a chronic Illness. I know I’m venturing into contentious territory right now, so I’m going to make something very clear. Having chronic pain and/or chronic illness is ultimately not a positive experience. It’s really hard to derive anything positive from it. I get it. However, since I have no choice it’s better, for me, to seek out fragments of light than it is to highlight the suffering I experience. How to do that is the hard part and like I said I don’t claim to have the answers. I’m trying a lot of things, and I think through the process of trying things I have picked up tools that help me to manage my symptoms so that I can minimize the emotional setbacks that occur when physical symptoms interfere with me living a life that feels meaningful and joyful to me.
Here’s the list I created:
1) Having a chronic Illness motivated me seek out opportunities to creatively connect with others
Creativity has always been a big part of my life. I’ve always been one to engage in art and music alone but now I’m reaching out more to share this with others. I’m started attending expressive arts workshops where I get to paint with others, and I’ve also started to play music at work with co-workers and participants. It’s one of the best things I’ve ever done for myself.
2) I talk to random people more
You don’t know what someone else is going through and a small conversation on the bus can make a huge difference in the way someone feels. I’m very much an introvert who works in a helping profession so I need time to recharge. But I realized it really can be energizing to engage on terms that work for me. We live in such close proximity to so many other human beings yet we’ve become so insular. Feeling isolated is a common experience for so many people, not just people with chronic illness. This experience has taught me the value of connecting in small ways and that many people out there have their own experiences with isolation and adversity.
2) I am more health conscious
Although I’ve never been a big junk food eater or completely inactive, I wasn’t consistent with exercise. Now, I do something physical every day. Whether it be the gym, yoga, a walk, a trail run etc. It’s hard when I experience fatigue or more severe pain, so I just modify what I do. Usually I’ll just do some yin/restorative yoga or just go for a walk in nature when I’m having a bad body/energy day. I also can’t eat a lot of things now so my diet is insanely clean.
Through having a chronic Illness I’m fully engaged in a healthy lifestyle that I really enjoy.
3) I feel more prepared for the natural process of aging
I know that sounds weird but when you think about it, I’ve already learned to adapt to body changes that come with aging like increased joint pain, inflammation, a weakened immune system, decreased energy level and changes in ability. I wish I didn’t have to deal with it at such a young age but it’s good that I’ve developed great habits right now. Emotionally I have accepted that it’s OK to have to do less sometimes or to experience changes in your body that affect your ability to do things. It doesn’t mean you’re weak. It means you’re human. Our society places far too much emphasis on production and youth. It’s not surprising that studies have shown that depression rates are high among older populations. But, I think mourning the loss of youth or your former self is one of the traps people fall into.
There are many ways to contribute to society and different types of valued roles. I believe you just have to find what works for your current self and stop looking over your shoulder for that old self to return.
3) I’m more engaged and focused in my life
Chronic illness has taught me to set mini goals that are realistic. Something about doing that has taken off a lot of pressure to achieve yet I’m achieving more with chronic illness. I think the reason for this is that the intent behind the goals I’m setting are just to feel good, to connect with people more, to feel intrinsic value, to feel authentic, and to feel inspired. They’re not about anyone or anything else other than what keeps me connected to myself and all the good stuff that I can cling to when my body isn’t cooperating with me.
4) I’m growing in my career since having Chronic illness
This one is hard to explain but I’ll keep it simple. Basically I feel I’ve gained more insight through having chronic illness that has helped me in my work in so many ways.
Also my sense of gratitude toward the kind of work I do has increased. I’ve always be grateful but not to the extent that I am now. I truly feel so fortunate that I get to do work that is meaningful to me.
5) I’m learning so much about myself
This is a big one. I won’t elaborate too much. The blog itself will be an elaboration on this, I’m sure.
Anyway, hope you find this helpful in some way.
Here are some links that you may find useful :
Grieving Your Losses
Coping With a Diagnoses of Chronic Illness
Aging and Depression