Wednesday, January 6, 2016

How the Chronically Ill are Effected Socially

On my blog I focus a lot on how I am feeling mentally and physically and even occasionally emotionally, but one thing that I have maybe mentioned here or there, but never dedicated time to explaining was how a chronic illness, just in general, effects 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, you are going to school, picking a major, internships, dating, going on fun spring break trips with friends, living with roommates, etc. It is all part of the experience that is socially normal.

But with someone with a chronic illness, like myself, it feels like it is everything listed above, and more, that we miss out on. The normal for us is 14+ hour day in bed. A monthly, and sometimes even weekly, trip to the Doctor is the only time you 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 2 years, it now has to be. So here are a list of a few struggles that the chronically ill struggle with in social situations.

1) "Netflix and Chill"

With the chronically ill the word "chill" should NOT be in their vocabulary, because there is no "chill" about chronic illness. It doesn't exist. Netflix, however, plays a very big part in the life of the chronically ill. In fact, don't be surprised if they have seen every episode of streaming movie that you want to watch. Netflix was invented for the chronically ill that are on bed rest (in my personal opinion), but that doesn't meat it doesn't involve them 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 your high school friend that you played basketball with during a holiday break when you know you have to get your christmas shopping done, or you know it won't get done, you play catch up. But eventually, the chronically ill run out of questions to ask (even though they probably already knew their whole life story from spending 5-6 hours on average switching from FaceBook to Instagram), and the questions are turned on them

-"What are you doing in life?"

What runs through my head: "Does getting to know your pharmacist on a first name basis count? I shouldn't mention that I'm only on 20 mg of Adderall Extened release once a day instead of twice, even though that is my biggest accomplishment so far.

Me: "Nothing really, just trying to get better..."

-"How have you been?"

Me: I've been alright, just trying to stay busy.

What I think about saying: I have been better, that's how I've been! I have been in bed for the past 48 hours watching normal people live their normal lives that I feel I want and deserve but I 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. Thats how I've been.

-"Are you working, 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.

-"Are you dating anyone, or been on any good dates lately?"

Me: "No not really, just living the single life..."

My brain: Bahahahahahaha haha, hahahaha... *sniff* *wipe a tear away* what dates? Big raisins?

-"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 3 months, he also wants me off dairy but he said I can't lose anymore weight, but now I have zero clothes that fit, I've added 3 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 for the chronically ill to answer:

3) "What even is..." or "What does [insert chronic illness of preference here] do?"

The moment comes in every single person afflicted with a chronic illness that they can't tell their whole story anymore or they will ring the persons neck. It might just be because it's been a bad day, or you have explained it one to many times recently, or something else. But when it comes, after that you will do everything to avoid having to explain as little bout yourself and your illness as you can, because 1) explaining it won't do it justice and 2) do they even really care? and 3) if so, they still won't understand, so why bother. And 4) how much is too much information?

So what I have found is you can offer the person a short version, or the long version... the only bad thing is, the short version usually is followed up with questions that turns it into the long version.

This is a problem for those dealing with a chronic illness, 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 chunking 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 that you really find interest in

It is hard when you have been sick for so long, and dealt with real 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. Those are hard to not feel like you are wasting time and energy, when you haven't practiced them for a while. And it might sound silly, or selfish. But it's not so much that the chronically ill is thinking "I have so much more pressing matters to worry about." but it's more like "How do add to this conversation, I know nothing about any of this stuff." Or they 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 their mind, they can't mentally connect with the conversation.

There are ways others can help the chronically ill. They can really sincerely listen if they choose to open up about something. They can notice if the chronically ill aren'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 super hard to do generally, not just for the sick. Whatever happens try not to let them feel more awkward than they probably already are.

All in all, the social aspect of being chronically sick is hard, and challenging. It is never easy to just get back into the swing of what is socially normal after being out of commission for so long. But if you don't want to feel even more of an outcast than you already are, you have to 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 suffers in with Chronic Illness.

-The Lyme Warrior