Keeping Up Appearances

When something personal and devastating happens to a person or family we have two choices as to how to handle it. Stuff it deep inside and work your tail off to hide it from the world or let everyone know and hope the best for their compassion and understanding. I found in the beginning of my illness I was very open, but it was actually approval I was looking for. Doctors could not figure out what was wrong with me so I pined for the rest of the world to tell me it was okay, I was really sick, it was not in my head, this was indeed happening. That approval did not come. Most of my friends were "party" friends and quickly faded into the backdrop of my life as I ceased to be able to enjoy the activities we used to engage in together. A few true gems stood out and I still count on their friendship to this day. Our families were a mixed bag. Although they are much more understanding and compassionate now (at least to my face) that was a battle that was hard fought and won with many of them and there were plenty of hurt feelings and stepped on toes along the way. My job...oh let's not even go there. But when I first got sick my husband had just started a new career and was making friends there. He is a very private person with his "personal" business by nature, so we let it be known I had some health problems but NEVER divulged the true extent or extreme impact it was having on our lives.

We chose the "hide it from the world" route and continue to do so still to this day. We have never let on how much my illness has cost us; emotionally, financially, psychologically. We have indeed worked very hard to "keep up appearances". This prideful approach has hurt our relationships with many who don't understand our choices or limitations. They view us as selfish or inconsiderate, spoiled or self-absorbed, not realizing we are simply a paycheck away from bankruptcy! The judgment and criticism we have received from many sources over many topics is the price we have paid to maintain that pride. Is this the right way to do it? Is this the best course of action? Who knows? I just know it is the road we chose to travel down, pride and privacy winning out over pity and pardon.

Perhaps that is why it took such extreme measures, two strokes at the age of 33, for me to stand up tall on top of that pride and go public with my illness, my experience being sick. My mother and father both were enlightened by reading my blog as to how horrible my journey really was, how hard I have fought this illness to regain some semblance of health. That surprised me, I thought they knew, I thought I had been telling them the entire time... But it is extremely difficult to comprehend the reality of living with Chronic Fatigue Syndrome and Fibromyalgia unless you yourself have lived with a chronic illness. That is why it is so important to find a network of fellow-Fibrates to commiserate with. You will find it takes 1/4 the energy to communicate your misery to them than it does to those that have never been through it. I did not want to be a sloppy mess of a sick person begging and pleading for the compassion and understanding of every opinionated and uninformed Sally and Sam out there. So I put on my happy face and pushed my sick self to fit into a world that did not allow for my weaknesses. I have suffered for this choice, I have paid a price. But who is to say showing the vulnerability of honest and open suffering would not have damaged me more?

Thanks for joining,
Leah