Friday, September 26, 2014

Let's Talk

The other day, while chatting with one of my sclero buddies, I came to a rather funny and yet stark realization:
The conversations I have with my chronically ill friends are usually quite different than those I have with my “normal” healthy friends.  I mean, I guess I’ve always known this and I’m sure it makes common sense for this to be the case. After all, one’s normal healthy friends can't fully understand what we go through. But I also found it very interesting how different the tone of these conversations can be even when you talk about the same situation.

For example, when a healthy friend asks me about my recent hospital stay or surgery the conversation might go something like this:

Heatlhy Friend: So I heard you were in the hosptial recently and had surgery?!
Me: Yeah, just trying to heal this finger already.
HF: How’d it go? How are you feeling?
Me: Oh, it was fine. As far as hospital stays and surgeries go. I’m feeling alright. No more pain, so that’s good.
HF: Yeah! That IS good. look great! (cue half smile and sad eyes)
Me: Thanks.
(Awkward silence, I change the topic) 

Now, to all my healthy friends, this is not to say that I don't appreciate your sympathetic inquiry and kind comments. But the truth is, you will never truly understand what it's like unless you have to go through it yourself. Which is why, I may never talk to you about my medical and chronic illness experiences the same way I do with my chronically ill buddies. 

See, one of the major differences I noticed in the conversations between my healthy friends vs my sclero friends is that healthy friends want to know so they can provide you some kind words of comfort. Your sick friends want to know so that they can compare war stories and help you find the silver lining. 

Sick Friend: Hey! So good to see you out of the hospital! How'd it go?
Me: Ugh, it was awful! I was there for 5 days and they had to give me 7 different IVs! I look like a freaking heroine addict. Look at these brusies!
Sick Friend: Girl I KNOW! Last time I was there for 2 weeks and by day 5 I had been poked 12 times! I finally broke down and told them to call my doctor to get a PICC line.
Me: Yeah, it's like they don't get it, our skin is tight, you can't treat us the same as everyone else.
Sick Friend: For real.
Me: The food was good though.
Sick Friend: What hospital were you at?
Me: Memorial Hermann
Sick Friend: Oh yeah, their food is awesome. 
Me: I had the turkey burger for like three days.
Sick Friend: Yeah! I always get the baked chicken.
Me: It's good, right?!
(Laughter ensues- they continue to ask REAL questions about my experience)

How were the nurses?- And we talk about how awful or how wonderful they were during that particular stay. How you know more about your disease than they do and how you can always tell who's new at their job by how badly they draw blood and how nice they still are. 
Did you get any REAL sleep?- The answer is always NO. Which leads us both into a tirade about how a hospital is no place to get better.
Do you have to go back?- The answer always an uncertain one because we all know how quickly being well can change to being ill. 
When do you see the doctor again?- It's always too soon.

You see, there is a certain level of cynicism and humor that comes from living with a chronic illness that only the chronically ill can truly appreciate and understand. We compare war wounds like soliders in battle because it helps us feel less alone. We try to "out sick" each other not because it's cool but because we have to share our stories (even if only to each other) to survive and to give others hope that "hey it could always be worse" and "if I made it through THAT, you'll make it through THIS." Our lives are a never ending dark comedy that only we are truly allowed to laugh at because after all, what else is there?

"We have to laugh to keep from crying"- Ntozange Shange

Again, this is not to say that my healthy friends' gestures and words are not truly appreciated, they are. And I am supremely grateful for anyone and everyone that cares enough to ask me about my health. But I don't feel as comfortable telling you (with sarcasm in my voice) about my bruised veins while I laugh about how my underwear got stuck on the IV pole when my husband went to go help me take a shower and we had to leave it there until the nurse came to change my painfully infiltrated IV for the 3rd time in 4 hours.

The conversations the chronically ill have amongst themselves will always be different than those they have with the healthy. Because the story about how your sister/mother/brother/uncle/past distant cousin had cancer and is now in remission so you "understand" what I'm going through- just isn't really true. Appreciated, but untrue.

I am fortunate to have an awesome support system- healthy and sick warriors. When I first got diagnosed I knew no one else with Scleroderma and it was hard- very hard. The internet is a wonderful thing for connecting people and for that I am grateful.

Truth is, no matter who the conversation is with, I feel that if at least I can find some comfort, peace, or laughter in the situation then that's all that matters.

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