I was recently talking to a good friend of mine who, unfortunately, understands all too well exactly what I'm going through because she suffers similar health problems. We were talking about how being stuck at home (because we're ill) makes us feel so isolated from those we love, care about, and want to hang out with. After our discussion, I felt it might be helpful to share some of what we discussed and further thoughts on that discussion.
Problem #1:
Even if we make plans to try to do something on a given day at a given time, we have no idea how we'll be feeling that day until shortly before said day or time. Each day has it's own set of health problems that allow one day an activity that you cannot do on another. I often go from one extreme to another w/in the same day, too, so I never really know for sure until just before hand how I'll be feeling. So, even though a partial solution to isolation is scheduling time with friends/family/etc, we never know if we'll actually get to do said plans and at least in my case, more often than not, I end up having to cancel.
The Partial Solution - We need to do our best to explain to our friends and family that when we cancel it's NOT because we want to - we have no choice. We need people in our lives who can be flexible and willing to make adjustments at last minute. We need friends who are willing to come to our house because getting out or driving somewhere just isn't possible right now. We also need you to believe that we are really as sick as we say we are and that we're not trying to take advantage of you or our situation.
Problem #2:
Because of having to cancel or turn down invites regularly, eventually people stop asking. While many times, we couldn't have come anyway, not being asked or invited still hurts. It's a tricky thing for both sides of this coin. You are afraid to call and ask because we hate having to say no and we are afraid you'll get upset because we have to say no.
The Partial Solution - I'm not asking people to invite us every time you ever do something, ever. I'm just saying that if it's something you know your sick friend used to LOVE to do or if it's something you always did w/ that person before they were sick, an invite or phone call to say hey I miss doing this, wish you were here or wish you could come can really help us feel like you still care about us.
Problem #3:
Short notice invites. I've had this happen a couple times where we get a phone call and it's an invite to go do this or that about an hour from now. The problem is, because I didn't know this was going on, I wasn't planning on saving energy for it and I've just spent most of my energy on the couple of chores that needed doing and know that I won't be up for that on top of what I've just done. On the good days, I have a very limited supply of energy and if there's something special going on, I do my best to plan for it so that I can give myself the best chance possible to be up for doing it. Part B of this problem is short notice offers to come by and visit. Because I can't always get chores done when I want, my house isn't always ready for company. If I have to spend 30-40 minutes picking up before you get here, chances are, I won't have much energy left for our visit and will have to cut it short.
The Partial Solution - If you know something's coming up or if you know of a day or time you are thinking might work out to drop by, let us know as early as possible. I know this isn't always something you can control so sometimes things just won't work out the way we want but giving us a chance by letting us know ahead of time will increase (slightly) our chances of being able to make something happen.
For right now, these are the top three that come to mind. Below is a quick list of other small things people can do to help those of us who are isolated due to illness feel a little less isolated.
-Call. It sounds so simple but I've found that many people just don't. I don't need to talk every day, but once every 2-3 weeks shouldn't be impossible. If you call me your friend, it helps to know that you care to keep this friendship going even if we can't hang out like we used to. I know you might be thinking, then why don't you call people and it's a fair question. I actually do initiate many phone calls but most often it's only to family and very close friends. It's hard to initiate a phone call to someone you haven't seen in awhile if you're still sick, still not totally sure why, and have nothing else exciting to talk about. People wonder why you called and then they think you're only calling to complain about your problems. I still like to know how my friends are doing, what's going on in their lives, etc, so a phone call from you so we can catch up can be a precious gem to those of us who are ill.
-Email/facebook. It's great getting these whether they are just fun and make me smile or a personal note letting me know how you're doing, etc.
-Cards/small gifts. There is a lady from our church that is AWESOME at this! She has sent me cards, emails, and neat gifts that just make me feel like I'm not forgotten. I can't wait til I can give her a big thank you hug for her willingness to reach out to those who need it. This is definitely her gift and she uses it to help encourage others!
In many ways, I've been on the blessing end of many things through this illness- God has provided phone calls, emails, cards, and gifts just when I needed them by using those of you in my life. How cool is that?! I can't say enough about how thankful I am for the ways God has provided for us through this trial. I just know that I'm not the only one who sometimes struggles with feelings of isolation or frustration because of the things mentioned above. I hope that this post can help you better understand ways you can help those in your life who struggle with chronic illness. Thanks for taking the time to read and thank you for trying to better understand our new normal.
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