Does it seem like everyone you know is able bodied and able to consistently ‘show up’? Do you feel helpless and maybe even a little sorry for yourself because you can’t attend a ‘town hall’ or march with thousands? The emails pour in telling me how important my presence is at some rally or another. Those emails can easily be a reminder of what I can’t do, if I let it.
The thing is that I’m not alone. Over the past few months, I hear my clients struggle with this. They want to contribute. They want to take part in things. They want to feel like everyone else who has a life of value. They want to know that they’re more than their illness. Isn’t knowing that you can contribute fundamental to well being?
When you live with debilitating and unpredictable health, the odds that you’ll consistently meet commitments that require your physical presence aren’t stacked in your favor. It’s always a bummer when your health takes a nose dive. I have yet to meet the person who meets this with a smile.
And then you face:
- Deciding – – Can I / should I show up? The thing is that with most chronic conditions, it’s hard to know if you’re actually harming yourself when you push yourself to ignore symptoms and carry on as if you’re fine. But ask yourself, can I give a good enough performance to make it worth it? And if you’re choosing to go because you think you’ll be too disappointed not to go, will you really enjoy it in this state?
- Explaining your absence to others. If you have a virus or a broken bone, you’re sure to be showered with sympathy and support. But when your absence is due to increasing chronic symptoms, you’re sharing a mouthful. Among many issues to consider, you’ve got to decide what to say and how much.
Ir’s a smart move to have things in place so that your absence won’t break an event. I always team with at least one other person so I’ve got back up. But even with the pieces in place, and knowing the show will go on without me, I’m deeply disappointed when illness keeps me back. The context doesn’t matter. It can be a business meeting, a volunteer event or a night out with friends. Not showing up is a big disappointment for you and the disappointments mount up over time. The disappointments can lead to, why bother at all?
It’s easy to slide into a place where you choose not to say, “Yes”, to anything that requires your presence. You tell yourself it’s safer this way. You’re not a burden on others this way.
I’ve wrestled with this for most of my life living with illness. After leaving full time employed work because I was too ill to keep my job, I tried full time volunteer work, thinking that if I couldn’t show up in this context, no big deal since I wasn’t being paid. But then I realized that the social justice work I”d invested in, paid or not, meant people rely on me to meet commitments. As I found myself increasingly missing things, I turned away. I focused solely on building my coaching business where, working solo and in my home office, I was able to meet commitments. But over time, I missed the other kinds of engagement. I decided to continue my coaching work and take limited risks into that outside world. I’m two years into this and it’s not been easy. I’m still deeply disappointed when I can’t show up. Sometimes I want to cry. Sometimes I want to withdraw again. It can remind me how much I wish for a healthier, more reliable, more ‘able bodied’ body. And, like all of the people with whom I’m honored to work, I have to dig deep to find my capacity to remind myself that I contribute in the ways I can. I am more than my illnesses.
Alyson Knop says
Hi, Rosalind–
I always relate completely to your posts, and this one is no exception. Like you, I had to leave full-time and then part-time work, and for a while, I was able to volunteer almost full-time for an organization I loved. But as the fatigue part of my illness got worse, I had to cut down to volunteering one day a week. Then, after a move from British Columbia to here, which really wiped me out, I could volunteer only once a month or less. Now, I do even less than that, due to worse fatigue and some heart issues, and I feel like I’m always having to say “no” and give excuses, which I hate. I don’t want to be a person who offers excuses instead of my time and skills! And I think wistfully of when I was younger and could push myself beyond my pain all the time and do a lot. But that’s no longer my body. It’s hard to live in a society in which what we *do,* rather than who we *are,* defines us. Even the latest magazine put out by the organization that advocates for people with illnesses like mine gets me down, with all of its articles on types of exercise I haven’t been able to do since age 10 and spotlights on people who are accomplishing huge amounts despite their illnesses. It makes me feel really inadequate. But you’re right: we need to remind *ourselves* that we are not just our ilnesses.
Rosalind says
Thank you for your thoughts on this, Alyson. It’s good to hear you can relate to my posts and that what I suggest, resonates for you. This life is tough, no doubt about it. Please don’t hesitate to let me know what topics you would like me to explore!