So much for keeping a blog schedule! I already had a post (mostly) written for the Thanksgiving holiday, but honestly, my attention to many things in my personal life has been lacking. I’d still like to share the post I wrote for Thanksgiving (two weeks later), but this is generally the season of giving so it remains relevant.
So let’s talk about a kind of sensitive topic for many of us living with chronic illnesses (especially invisible illness). The fear that we are a burden to others.
If you are a caregiver or friend, loved one etc. of one of us spoonies, you may or may not have had to assure “us” that we’re not a burden or…..well, you may feel we are a burden. Here’s the siutation…we sometimes do feel we are a burden and wish we didn’t have to involve you in our issues, but there are things we just have to deal with and we like and appreciate your support.
We understand that you may have conflicting feelings about our illness, what it means for us, what it means for you, and if you should help us or not and in what capacity.
On our side of things, we are the ones with the pain, or constant doctors visits, or medicines, so it’s certainly on us to be in charge (we just gotta do it to be well!).
When we are first diagnosed, we are doing our best to figure everything out. You may have been involved in the figuring out process, but I’ll bet, more often than not, we’ve kept most of that to ourselves. Why? First off…it’s a lot of information we’re trying to absorb. We don’t want to scare you (even if we are scared) and we don’t want to give you bad information! We also don’t want to be seen as complainers.
These early days may also be more challenging for us as we get used to doctors appointments, medicines, and feelings we’ve never had before. We may be more frazzled or constantly sick. You may have had to take care of us in a different way than you imaged or even wanted. We’re sorry. We don’t want to be a burden. It’s just our reality and not our choice. Our choices rest in figuring out how to best deal with and how best to fight to have as normal of a life as we can.
As time goes on and we’re more experienced with our illness we may tell you more about how we feel (physically, mentally) or what we are dealing with (i.e. finances) because…maybe we think you are used to it by now and you can handle it because we’re handling it better. This can be a poor assumption on our part.
On the other hand, we may also try to over-educate you in order to alleviate your fears or anxiousness about our illness. You might get tired of hearing about our ‘problems’ and may get annoyed, exasperated or just plain cease to care and brush everything off.
We understand it can be hard for you, and please understand that it’s not easy for us. We appreciate your patience, your support, your questions, your frustrations and your care. So in this season of giving I’d like to thank you caregivers for giving what you can and we hope you know how much we appreciate you.