Don't Be Surprised If...

6:00:00 PM

Living with a chronic illness can be difficult, living with more than one can be horrible. So, there's just a few things that you need to know if you're going to be around someone with a chronic illness.

Don't be surprised if...
1. We forget to respond to your text, email, or phone call.
To be honest, we want to talk to you and more than likely, we did read your message. We just forgot in the hectic tornado that is our lives. Between remembering to take my medications, my work, and my brain fog, I can't help but forget to get back to everyone. 

2. We rarely agree to plans.
Making plans can be difficult. I know for me, I can't tell how I'm going to feel after a meal or on a certain day. I also have a very sensitive stomach, so there are many restaurants that I just can't go to. While I'd love to see my friends and eat a nice meal with them, it just isn't worth the pain that is guaranteed to come later. Not only is food a problem for me, but I can't attend most events either. Anytime that the activity involves being outdoors, being active, or standing/sitting for long periods of time it just isn't for me. On the rare occasion that I can agree to plans, I will prepare myself by relaxing for days ahead of those plans, but it doesn't mean that I will be well enough to follow through with them.

3. We have to cancel our plans.
Piggybacking off of my last point, more often than not, I will have to cancel the plans that I previously made. I might just wake up that morning and know it won't be possible to follow through with them. Sometimes, I even come to that realization a little later in the day. It just depends. Each of our bodies are different and it can be really hard to guess how they'll react or feel on certain days. 

4. We occasionally zone out.
Lets be real, everyone zones out from time to time, but spoonies do it a little more often than usual. I know for me, I struggle with migraines and brain fog. It can be hard to pay attention to whats going on when I can't even pay attention to myself. There are times when I'll be trying my best to stay engaged, but I just can't help it. Migraines are painful and brain fog is just a pain in the butt!

5. We don't feel well all of a sudden. 
Part of dealing with a chronic illness is dealing with the unexpectedness of it all. Like I said earlier, we can't always guess how we'll feel at certain times. Normally, I know all of my trigger foods. I know which ones will hurt my stomach and which ones won't; but sometimes, I'm wrong. Occasionally, I'll eat one of my usual favorites and I'll immediately get an upset stomach. So, even if we think we know what works and doesn't work for us, beware that we might need to take a break or even go home. 

Now, not all chronic illness warriors are the same. So there may be a few of these that do not apply to you or your loved ones. However, in case they do, a few tips for being a tad bit more understanding and helpful during these times. 

Helpful Tips:
1. If it's been a few days and you haven't heard back from us, just contact us again. We'll realize that we didn't get back to you, feel a slight pang of guilt, and try our hardest to remember this time!

2. If we RSVP no to every one of your invitations, maybe take the time to ask what works best for us. Some of us do better during certain times of the day and it could have just been a time issue. If it seems to be more, it could just be that we know we won't be comfortable enough. So it could benefit you both to see what activities work best for the other person. Compromise is key!

3. If we have to cancel our plans, please try to be understanding. Most often, we feel horrible about it and we still want to see you. We just know our body's limits and we do our best to respect them. So we just ask that you understand. If you still want to hang out, maybe plan to come over to their house for game night or a movie marathon!

4. If you noticed that we are a little out of it or maybe missed the question that you last asked, please try not to get mad. Just politely try to bring us back to Earth and ask if everything's alright. We might get a little bit embarrassed, but knowing that you are understanding of what's going on is the one of the best feelings. More often than not, other's respond with anger and it can lead to large blow outs. Just know that we are trying our best!

5. If we begin to start feeling ill, don't ignore it. Be honest with us because sometimes we will do our best to hide it and in doing that, we make it worse. So, call us out on it and tell us you understand if we need to go home or maybe just sit down for a little bit. If they're anything like me, the guilt will make the situation worse, so having your understanding is one step towards feeling better!

As I mentioned earlier, not all spoonies are the same. So not everything on this list will apply to you or your loved ones, but I bet that these tips will come in handy at some point!

Are there any points or tips that you think are missing from this list? I'd love to see them in the comments! 

You Might Also Like