Friday, July 22, 2011

A Pain No Pill Can Cure...

This is the summary of a conversation I had with a few friends online; we discussed the dilemma we face as chronically awesome patients. We find ourselves dealing with people that don't believe our pain is real ("but you don't look sick",) and trying to find a way to properly express ourselves to family and friends.

So, here we are...stuck between a rock and a hard place (pressing against our fragile body.) The one word that sums up the feeling of fellow spoonies: lonely.

Social networking has been a godsend to many of us; finding peers sharing a similar experience makes it easier to talk about our daily lives (or lack thereof.) In my personal life, I don't know a lot of people speaking openly about any illness or condition. Twitter and Facebook has given us a platform to vent and discuss issues that are important to us without having to go into an autoimmune litany.

I posed a question this week: "Is it difficult to talk openly about your illness to family and friends?"

"What I find difficult is trying to explain my illness in a way that expresses not only the severity but the complication of it all."

" It's very difficult. My family believes my RA is just like osteoarthritis and feel like I'm exaggerating until they see the swelling. Even then, they believe I've done something else to make my joints look that way." 

"If a parent, child, or friend of mine had a disease, I'd try to find out all I could about it and try to understand and help as best I could. I just haven't seen this in my family and friends. Makes for a very lonely life."

"I have had different ones tell me that if I was just more positive, I could will this disease away."

"My husband thinks I'm overly exaggerating my pain. He's not helpful at all & its causing a strain on our relationship. I'm not managing well. I let my kids think I'm fine. I fell so alone."

This is just a small sample of people, but it speaks volumes to the plight of those with chronic illnesses; no one should have to feel like this!

Why is it so difficult to open up to others? Maybe we don't want to feel rejected, or neglected by our friends. It's possible we don't want to be left out of social gatherings or events nor do we want to explain why we couldn't do this or why we don't (or can't) leave the house because of a flare or extreme fatigue over and over again.  

On the flip side of that, once we feel comfortable enough to tell those close to us, we hardly hear from them due to the enforced seclusion, making us regret our decision to open up. Is it because they don't know how to communicate with us? Have we become foreigners?  

We are the same people, maybe more sensitive due to the loneliness. 

So, how do we open up the discussion? What's the best approach?

There are many tips and resources available online to help open up dialogue; from writing a letter (which I did,) or finding support groups for patients and family members.

This story can't be wrapped up in a pretty bow; it takes a lot of work from all parties involved. Patients have to find support with people that have similar conditions - this could help you find the courage to address your loved ones. Families should be supportive and not automatically attack patients when they are already vulnerable.

The key word for everyone: patience.

Friday, July 15, 2011

What You Don't Know Can Hurt You...

Wednesday, I came across an article in "Arthritis Today" (a magazine I never thought I'd read.) The article provided a  timeline of treatment for newly diagnosed autoimmune arthritis patients. Reading the timeline, I began to reflect on my various doctors visits: to sum up the long conversation I had with myself...I didn't receive the treatment/medication required for RA patients.

I was a little upset as I thought about this: for sixteen months I made my way to the doctors office, becoming BFF's with the staff and nurses as they checked my vitals, getting all these test performed and prescribed this anti-malaria drug and Vitamin D for, what?! Why didn't I get this x-ray? How come this test wasn't performed? Did the doctor check for that?! I thought about it a little more and got frustrated with myself: Did I ask for these test/labs!?  No.

I didn't know anything about complex life of autoimmune disease; there is a lot of research and documentation, and a ton of personal accountability. I have said this before, doctors are a great resource and I've had a nice primary doctor and rheumatologist so far; apparently, I have been too nice to the doctors-not asking the tough questions or requesting more information. 

That article reminded me why I started talking about my experience with RA; too many times we take the doctor at their word, accepting things 'as is', too many times we get caught up in the world around us, too many times we allow pride (or shame) get in the way of our well being. We have to make time to keep a health dairy, research our symptoms and have an open relationship with our (sometimes) multiple doctors and specialist. If we don't speak up for ourselves, who will?!

This information will be very useful as I prepare for my next doctors appointment and I hope it helps with yours! Watch out, rheumys...we are preparing for you!

Friday, July 8, 2011

My Big, Fat, Spoonie Holiday!

Much like your family, we prepare for the holidays like an Olympic event- we come together, laugh a lot, and eat way too much!

Since I've been ill, time with family and friends had been limited; I opted out of Thanksgiving and Christmas last year because I was just too tired to venture out and I was still in the early stages of learning about autoimmune diseases so I really didn't know how to bring up my dysfunctional immune system in casual conversation.
Saturday,with some convincing, I made it to my hometown for the 4th of July holiday.

This was the first time some people saw "the new me" with my wig, hat and "fall like clothing" (in the summertime.) Since this has been part if my routine for a while, I was used to it...explaining it to my extended family is something totally different. I had to be quick on my feet:

Family member: "Aren't you hot with that jacket on?! Me: "I'm too cool to be hot!" (Thanks, unregulated body temperature!)

This weekend did give me a small opening to talk about RA to some of my family.
Some of the things I heard:
"So, what's wrong with you?"
"You're too young to have so many issues!"
"There's a pill you can take for that, right?"
"You had such pretty hair..." and
"I hope you feel better soon."

I know this was said with love, so I wasn't overly offended or saddened by these remarks. I didn't go into extreme detail (no need killing the party...but that trip to the ER did throw a curve in Sunday's plans!)
I did my best trying to explain how my body works now, without sounding like a human medical dictionary. As I talked to my family, I noticed that I wasn't as uncomfortable talking about RA as I used to be...I'm starting to "find my voice" (yay, me!)

Despite all that madness, I enjoyed myself...good laughs, too much food and unconditional love.

Up next: Labor Day...

(This lesson is dedicated to the new "spoonies" out there...talking about chronic illness is HARD, but it gets easier.)