My Chronic Struggles With Keeping Up With Replies
Last updated: May 2023
We live in a bit of a "now culture" where people want everything instantly – including replies to text messages and emails. But sometimes this just isn’t doable for those of us living with chronic illness.
Before my diagnosis I was super active on my phone. I was always getting involved in the group chat banter and chatting to my friends at any opportunity. But when AS wormed it’s way into the WhatsApp group that me and my immune system had, this soon changed.
You’re not alone
I used to think it was just me who was awful at keeping up with messages to people, but since I have formed friendships with others living with chronic illness, I have realised it is a very common issue for us all. Most of my conversations with fellow spoonies have breaks of days or even weeks in between replies and conversations are usually reignited with a message from one of us apologising for the delayed response.
In my experience, this has always been met with understanding amongst spoonies, but a number of my able-bodied friends have taken issue with it. I feel it can sometimes seem to them that I’m not as invested in our friendship or I’m purposely ignoring them. This is certainly not the case. With this in mind, I have tried to break down some of the reasons why chronic illness can cause these struggles.
I often find myself simply too exhausted to hold a conversation with someone. Extended periods of intense fatigue are all too common in my life and resting in bed has probably become my biggest pastime.
In all honesty, I do use my phone a lot during these times, but I just don’t have the energy to use it for it’s primary use of communicating with others. I just about have enough the energy to mindlessly watch videos and scroll social media looking at the posts of the friends I wish I had the energy to talk to!
Instagram stories can get me into trouble too: "I know you’ve been online because you saw my story" is a message that I am very familiar with receiving. What they don’t understand is that watching somebody’s story on social media requires nothing more than having my eyes open and pressing a button. Whereas formulating a reply often requires energy and brain power that I may not have at the time.
Brain fog is another big player in this. I frequently open up a message from somebody and find myself forgetting what I am doing, either before or during a response. Weeks can go by before I finally have the brain power to remember that I have accidentally left somebody on read. I seem to have have taken up an unintentional hobby of apologising and replying to people at the same time.
There are times where I try to reply to someone, but my foggy mind can’t take in what they are saying and so it’s impossible to formulate a proper response. My brain feels like it’s buffering on the world’s slowest Wi-Fi & my words just aren’t downloading. The fear of sounding stupid or typing something that may not make sense often leads me to put replying on the later-base, but because of brain fog, I end up forgetting to come back to it. It is a vicious foggy cycle!
Sometimes I am just not mentally capable of engaging in conversation. It doesn’t matter how much I enjoy talking to someone or would like to be doing so, sometimes it just isn’t possible. My pre-diagnosed self would never have fathomed the mental and physical toll of living with a chronic illness.
Sometimes I just need a break from everything. Not just to recharge my batteries, but also to try and clear my mind a little. Of course, sometimes talking to people can help in these situations, but then there are also times where I feel the need to break away from the world for some alone time.
There are also occasions where the reality of being chronically ill makes me feel extremely lonely, but my body just doesn’t have enough gas in the chamber to properly reach out to anyone.
If you find that your chronic illness gets in the way of communicating with loved ones as often as you would like, know that you’re certainly not alone! You have so much already going on and should not feel guilty about these things.
If you’re lucky enough to be able bodied and have a friend who lives with a chronic condition and is often slow on the replying front, please don’t take it personally. They are not purposely ignoring you and are probably experiencing some of the issues I have addressed in this article. Please understand that these things are a bit more complicated and difficult for us.
Does your illness affect your ability to keep in contact with friends or loved ones? Let me know in the comments.
Do you notice worsening flares in colder weather?