Wow, we are just a few short days away from Christmas! Can you believe it? This year I’ve really been thinking about and working on peace. In our western culture, everything is so fast paced and rushed, particularly around the holiday season. I’m realizing that more and more, especially because I work in retail! I find that I need to take extra time to be still, and be very conscious of my mental state. It can be really easy to give into anxiety and needless business. This is a challenge and vital for everybody, however, it’s especially important for people with chronic illness to check in and take inventory of their mental, emotional and spiritual state.
Like most people with chronic illness, stress can factor in greatly to contributing to flare ups with my illness. I sometimes forget that. It’s actually easy to forget that in order to keep yourself healthy, you probably have to live your life a little differently than the people around you. You wonder at times why you can’t do the same things or treat your body the same way, because these are your friends, your peers, your coworkers: the people you see on the daily. Since you’re doing the same things, the expectation is that you would be on similar pages with your energy, capacity, etc. I sometimes need to take a step back and remember that it’s okay to take care of myself. It’s okay if I don’t have the same amount of energy as other people my age. I’m doing my best with what I have, and that’s okay. I almost never tell people this is why I can’t go out, need more time to recharge, or do this or that. That being said, I know there’s so many other people affected by chronic illness that can relate to all this! I thought it’d be helpful to those people who love someone with chronic illness to get an idea of some of the things we deal with that you may not understand, but want to.
(1) When we aren’t committing to things too far in advance, it’s not because we’re flaky. It’s because we truly don’t know how we’ll feel that day, and we don’t like disappointing people by cancelling.
(2) We have learned a lot about what our bodies needs to function. For example, if I get less than 8 hours of sleep more than a couple nights in a row, I will get sick, as my immune system is already compromised. Our self care may seem excessive to you, when for us it’s just the bare minimum to function.
(3) Please have grace when we do have to cancel plans. Most likely we are already guilt tripping ourselves hard enough and sad we can’t make it. We don’t like always talking about “feeling sick” and we probably won’t use that as our reasoning, so try to be understanding of that.
(4) We can be the life of the party one night and then not feel well enough to even go out the next night. Things change day by day. And while we wish we had consistency, we’ve grown used to the fluctuating circumstances of our feeling good days and feeling bad days and just try to roll with the punches. We hope you can too.
(5) Just because we don’t look sick doesn’t mean we don’t feel sick.
(6) We don’t all experience chronic illness in the same way or symptoms. Understanding how one person operates doesn’t necessarily mean you understand the other.
(7) It can be hard enough to understand your own needs, limitations and boundaries. Don’t assume you understand ours, and don’t project onto us your expectations of how you think we should be functioning based off of your menial understanding of our condition. We are all growing and learning more about each other and ourselves. Let’s give each other grace and compassion.
(8) There is a lot of mental and emotional strength that comes from having lived with chronic illness. That being said, we do get tired. Though we have learned this type of thinking doesn’t benefit us, sometimes we still wish we were different or our circumstances were different. We may go through seasons or times where we grieve the version of ourselves we used to be, or the versions of ourselves we wish we were.
(9) We don’t need sympathy, but we do love your grace and patience. We too, are trying to show ourselves grace and patience.
(10) We’ve most likely already tried a thousand different things to fix various symptoms. If you really don’t understand, don’t have chronic illness and aren’t a doctor, try to hold back from the tips and advice on what you think would help. While we understand you are coming from a place of love and you just want to help, we’ve already done so much research and tried so many things. It’s very hard to keep ourselves from becoming discouraged and slip into an unhealthy mental state when one more thing doesn’t work. That being said, we’ve most likely already tried what you’re about to suggest, so save us the mental hurdle of facing that discouragement again.
(11) We may not be able to do the things we once did, (if you knew us before chronic illness), or the things we did six months ago, or even the things we did six days ago! If it’s frustrating for you, you can only imagine how frustrating it must be for us.
(12) Where 1 + 1 = 2 for most people, 1 + 1 = 3 for us, and on some days 5. There’s really not a formula, which is why it was most likely so hard for our disease to be diagnosed in the first place.
(13) Brain fog is a pretty usual symptom for those of us struggling with chronic illness. It’s actually caused by inflammation. Catch us zoning out, forgetting names of people we see every day, not remembering how to perform certain tasks, and having a hard time concentrating, how bout that? (Please give us grace.)
(14) Understand we are so grateful to have you in our life! Your love, patience and faithful friendship make the good days great and the bad days better. You’re awesome and we love you, and don’t you ever forget it!!!
Wishing you all health, peace and love this holiday season.