Being chronically ill can be isolating. There are several things that contribute to the isolation. It’s not only our own thoughts and feelings that cause us to distance ourselves, so do the looks, words, and actions of family, friends, medical professionals, colleagues, and even strangers. People interact with me differently, now, than they did before I had to drastically change my life because my conditions forced it.
Sometimes, the differences in behavior are because they just don’t know what to say, or do. Others, it’s because their perspective of me has changed, and they just can’t understand why I never get better, or they don’t believe it can really be that bad. They are wrong. It really is that bad, and requires a drastic adjustment to adapt. We have to forego all the fun things in order to be able to handle just managing the basics of daily life.
How can you help?
There ARE things that can make adapting to a life with chronic conditions a little less isolating and negative. It’s common to lose touch with many of our friends since we can’t do all the things we were once able to. When someone takes an interest in making sure to adjust things so we can be included, it can have a more positive impact than you may imagine. If you’re someone who wants to include loved ones who are disabled, and/or living with chronic conditions, the following tips can help:
- Invite us. I know it seems obvious and way too simple to make a difference, but it’s something many people forget to do when we aren’t out socializing on a regular basis. It doesn’t help that we so often have to say no when asked to do something. We do understand that it can be frustrating to ask, just to be rejected, but our rejection isn’t by choice. It’s because our bodies won’t allow us to do everything we want to. When people stop inviting us, we miss out on even more than if we’ve had to turn down the invite. At least the invitation keeps us in the loop about what is happening. This allows us to be able to ask about it, and be involved in our own little way. It can make all the difference in the world.
- Make adjustments. Think about whatever activity or event you’re doing. Are there things that are going to make it particularly hard for your loved one to be involved? If they use mobility aids, have you checked for accessibility? Will they need to take breaks? Is there time for that, and a place to do so? Do they need any special accommodations to tend to their needs? These are important things to think about. We have to consider a huge list of things when we’re trying to decide what we can do. Preparing to have an event or outing with someone who is chronically ill only gives you a very small peek at what we have to constantly think about. Every second of our existence has to be meticulously managed to ensure we can accomplish what we need to. It’s exhausting and can often lead to us not wanting to do things because of all the details involved. Many times, we simply don’t have the energy to get things done.
- Give virtual access. I can’t tell you how many times I’ve wished there was a live stream of whatever event or activity I was invited to. Technology gives us the ability to be included in just about anything, even when we can’t be there physically. Asking someone to stream at least the important parts of the activity, or even hiring someone for an event, can keep those of us who aren’t able to attend from having to miss out completely. There are different ways to do this, but the easiest I’ve done so far is using Facebook. You can create a Facebook event and invite everyone you are inviting in the physical world. This gives you a forum for people to interact in, and a place for you to give access for people to watch the live stream. Another advantage to creating an event is that it lets you control who sees it, instead of just posting it to a social media channel that allows anyone on your friends’ list to see. You can also use live streaming options on other social media platforms if they are easier for your guests to use. Most of them will give an area for discussion so that virtual guests can interact. You can even set up a laptop at the event so people can stop by and comment and make your virtual guests feel even more included.
- Be understanding. For real understanding, not just polite. We can tell the difference. There may be times you’ve done everything you possibly can to make it to where we can attend, but we still can’t make it. That’s the nature of living with chronic illnesses. Some days our bodies just say no, and there isn’t anything we can do to make it otherwise. Trust me, it’s even more disappointing, and frustrating, for us, than it is you. Don’t get upset with us, and don’t let it stop you from inviting us. Even though we often can’t go, it helps to know that people do remember we exist and want us there.
- Let us know you AREN’T judging us. You don’t necessarily need to come right out with a conversation about it, but there are ways to say things that can make us feel more comfortable, and making sure to keep looks of judgement off your face is also a plus. We judge ourselves for not being able to do everything we “should,” so we definitely don’t need anymore of that. Understand we are trying as hard as we can to do all we can.
These tips aren’t foolproof. Nothing really is. The nature of chronic illness makes it that way. There can be so many different symptoms to these conditions, and each person can be affected differently at different stages. Since that’s the case, your friend or family member may need things that I haven’t thought of. Take the time to talk to them and be sincere. Ask them how you can make things better for them and stress that you really WANT to help. Just having someone care enough to have that conversation can mean the world to people who are so used to being dismissed or judged by others. Making a few small changes can help make those with chronic illness far more comfortable accepting invitations, allowing them to improve their quality of life.