I was going to talk about something else today, but given world events, I thought everyone might be feeling a bit overwhelmed right now. The thing about living with a chronic disorder is that we’re basically at the maximum amount of stress we can handle all the time. Add something else, no matter how tiny, and it’s easy to get overwhelmed and feel helpless. And the news all around us isn’t exactly tiny. You’re probably being bombarded with reports of all sorts of problems in the world, in your country, and even in your local area. It’s easy to forget that you can’t solve all the issues in the rare disease world, let alone end a pandemic or a war.
So what can you do? The best piece of advice about being overwhelmed is to choose your battles carefully. Just as you can’t fix everything that’s wrong on the internet, you can’t fix everything that’s wrong in real life.
You may see a lot of things around you and in the news that need fixing, but you don’t know where to start, and you know there aren’t enough hours in the day to do even a tiny bit to help with everything that needs fixing. When you’re already advocating for your own and your loved ones’ health, you just don’t have the resources (emotional and/or financial) to support a dozen other causes you believe in. Even trying to do it will burn you out, and then you won’t be able to do anything.
So, pick one cause and commit to that. For me, it’s usually advocating for the chronic hypophosphatemia community. It’s not that I don’t care about other issues, but I know that if I try to fix all the problems I see, I won’t be able to accomplish anything at all, because I’ll get overwhelmed and shut down. I’m a fixer by nature (probably why I was attracted to practicing law), and if I see a problem, I want to fix it. It’s hard for me to accept that I can’t fix everything. But once I accept that fact, I can be more effective with the problems I focus on.
It’s still hard to accept sometimes, so I do occasionally venture outside the chronic hypophosphatemia world to support other causes. In those cases, though, I choose projects that are time-limited and involve following someone else’s directions, rather than being in charge. For example, last month I attended some events about rare disease in general, since it was rare disease month, and I participated in a one-time fundraising project for voting rights.
Right now, when the news is particularly overwhelming, if you want to do something, but don’t know where to start, the first step is to pick just one cause you can help with. Maybe it’s financially or politically supporting refugees from unjust regimes. Maybe it’s financially or politically supporting burned-out healthcare workers. Maybe it’s closer to your own health issues, calling or writing to your legislators to support the federal Ensuring Lasting Smiles Act. Or maybe it’s helping a neighbor who’s struggling.
I know I write a lot about stepping up, committing to advocacy at this critical point in the evolution of health care. I do believe that there are a lot of little actions we can take on a regular basis that add up to big benefits. But I also know from personal experience that sometimes we can’t do anything more than what it takes to get ourselves and our loved ones through the day. And that’s perfectly okay. Please know that if that’s where you are in your life right now, I totally understand and support you. If that’s the case, I hope you can acknowledge that that’s where you are at the moment, and let go of any guilt and frustration and negative thoughts surrounding it. Those emotions and thoughts will only make it worse. (Yeah, I know; letting go of the negativity is easier said than done. Been there, failed to do that.)
I suspect a lot of us are feeling overwhelmed right now. So rather than suggesting any advocacy work you can do this month, I’m going to prescribe (metaphorically; I’m not a doc or licensed social worker) a little self-reflection. Will doing a little something extra to help others (patients, refugees, friends, etc.) make you feel better or worse this month? If the very thought of adding a demanding project to your To Do list makes you want to cry, then instead find something that brings you joy and spend a few minutes doing that: play with your kids or pets, bake something healthily delicious, take a long walk (or do some other physical activity that clears your mind), or engage in a hobby that you’ve been neglecting.
On the other hand, if you decide you will feel better if you do something to help others, then consider what ONE thing you have the resources (time, energy, finances) to do, and let go of all the other calls for you to act. And don’t feel guilty about the things you’re not doing! Doing anything at all to help those who aren’t your direct responsibility is a righteous act!
Postscript: If you do have a minute to help out the hypophosphatemia community and don’t have another project in mind, AND you have experience with hearing aids (for either hearing in general or tinnitus in particular), I’d love to hear about your experiences (both good and bad) for an upcoming blog post. Contact me: gin at GinJones dot com.
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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