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.
Lupus & Theme Parks - Part 1: Walt Disney World
2 weeks ago