4 Social Situations I Struggle With as Someone With Chronic Illness
On my blog I focus on how I am feeling mentally and physically and even occasionally emotionally — but one thing I have maybe mentioned here or there but never dedicated time to explaining was how a chronic illness can effect one socially.
I have had my chronic illness since 2013, but I didn’t know about it until September 2014. Since then I have had to drop out of college, cut back heavily on my working hours and move home with my parents. At age 21, when you are culturally in the prime of life, going to school, picking a major, having internships, dating, going on fun spring break trips with friends and living with roommates are all generally part of the socially typical experience.
But for someone with a chronic illness, like myself, it can feel like it is everything listed above and more that we miss out on. The “normal” is 14-plus hours a day in bed. A monthly, and sometimes even weekly, trip to the doctor may be the only time I will get ready for the day. And getting ready just means changing into some clean sweats and actually putting on a sports bra.
So now that I am slowly on my way to recovery, I have to get back into the swing of what wasn’t my “normal” for two years. It now has to be. So here are a list of a few things I feel those with chronic illness may struggle with in social situations.
1. “Netflix and chill”
With people with chronic illness, I don’t think the word “chill” should be in our vocabulary, because there is no “chill” about chronic illness. It doesn’t exist. Netflix, however, can play a very big part in the life of those with chronic illness. In fact, don’t be surprised if I have seen every episode or streaming movie you want to watch. Netflix was invented for people with chronic illness on bed rest (in my personal opinion), but that doesn’t mean it doesn’t involve feeling super sick or in constant pain while watching. Netflix is a way to distract from the pain, not so much a numbing agent.
2. Catch-up conversations
When you see a high school friend you played basketball with during a holiday break when you have to get your Christmas shopping done, you play catch-up. But eventually, I run out of questions to ask (even though I probably already know my friend’s whole life story from spending five to six hours a day switching from Facebook to Instagram), and the questions are turned on me.
Friend: “What are you doing in life?”
Me: “Nothing really, just trying to get better…”
What runs through my head: “Does getting to know your pharmacist on a first-name basis count?”
Friend: “How have you been?”
Me: “I’ve been all right, just trying to stay busy.”
What I think about saying: “I’ve been better, that’s how I’ve been! I have been in bed for the past 48 hours watching people live their lives that I want and deserve but don’t get. So I’ve been depressed. I’ve even been having suicidal thoughts and have been seeing a therapist weekly along with my regular doctor visits. That’s how I’ve been.”
Friend: “Are you working or going to school?”
Me: “Yeah, I’m just working, saving money…”
What I think: “Ha! I’m lucky to get 10 hours a week, and I won’t mention that I lost my scholarship because I keep deferring with a hope that I can one day go back.”
Friend: “Are you dating anyone, or been on any good dates lately?”
Me: “No, not really, just living the single life…”
My brain: “Hahahaha *sniff* *wipe a tear away* What dates? Big raisins?”
Friend: “Well, you look great.”
Me: “Oh thanks, so do you!”
What I want to say: “Yeah, my doctor took me off gluten and sugar indefinitely, and when I finally had the motivation to do it I dropped 30 pounds in three months. He also wants me off dairy, but he said I can’t lose any more weight, and now I have zero clothes that fit. I’ve added three extra holes in my belts and everything I own is baggy.”
The fact of the matter is, I would actually be fine saying those things, or maybe most of them, but then they lead to the big question that is hard to answer:
3. “What even is…” or “What does [insert chronic illness] do?”
There comes a moment when I can’t tell my whole story anymore. It might just be because it’s been a bad day, or I have explained it one too many times recently, or something else. But when it comes, after that I will do everything I can to avoid having to explain about myself and my illness, because 1. Explaining it won’t do it justice, 2. Do they even really care? 3. If so, they probably still won’t understand, so why bother, and 4. How much is too much information?
So what I have found is I can offer the person a short version, or the long version. The only bad thing is, the short version is usually followed up with questions that turn it into the long version.
How long can I go on with my story until they don’t care, or until they look at me as something less than human because I make my suffering sound awful, or scare them into thinking they have it? Or worse, have them start chucking medical advice at me? It is a huge dilemma that is very hard to figure out. Sometimes, I think seriously about printing out fliers so I don’t have to explain myself.
4. Finding a conversation I am really interested in
It is hard when you have been sick for so long and have dealt with things like depression, political awareness of your illness, insurance holds on medication that you will willingly give up your arm and leg for, and even sometimes suicidal thoughts, to suddenly get thrown into a conversation about the latest celebrity gossip. Or about the “big game” or the latest new album. It is hard to not feel like I am wasting time and energy when I haven’t practiced those conversations for a while. It might sound silly or selfish. But it’s not so much that I’m thinking, “I have much more pressing matters to worry about,” it’s more like, “How do I add to this conversation? I know nothing about any of this stuff.” Or I could be thinking, “I can’t think about this when I’m worried about when my next seizure will be, or when I can go back to bed again.” So many other things are pressing on my mind and I can’t mentally connect with the conversation.
There are ways others can help. They can really sincerely listen if they choose to open up about something. They can notice if someone with chronic illness isn’t adding much to a conversation, and not judge or feel like they have to include them. Sometimes it just doesn’t work for them. Let that be OK. Ask if they feel comfortable sharing their story before diving in. If they say they don’t feel like sharing about their disease, that doesn’t always mean no and never ever. It might just mean not right now.
Catching up is hard. Instead of asking them how they are, ask how they have been improving, or if they don’t look so well, ask if there is anything they need. It is up to them to then be honest about themselves, something that I have found is sometimes hard to do in general, not just for the sick. Whatever happens, try not to let them feel more awkward than they probably already do.
All in all, the social aspect of being chronically sick is challenging. It is seldom easy to just get back into the swing of what is socially “normal” after being out of commission for so long. But work to get yourself back into it, socially. It’s almost like a healing process all on its own. It just goes to show that it is more than just your health that can suffer from chronic illness.
If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.
The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.
A version of this post first appeared on The Lyme Warrior.
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