9th
Emotional hurdles
I’ve had the idea to write this post for quite awhile however I’ve held off because I wanted to get my thoughts sorted out so that it not only tells my story but also adds value for others, both patients and friends/family of people with chronic illness. This post begins a series I’ll be authoring on living with chronic illness.
The emotional and psychological hurdles are more often tougher to overcome than the illness itself.
The single toughest aspect of life after being diagnosed with CVID hasn’t been the fights with insurance to approve my treatment nor finding work after having been unemployed for nearly 2 years. No, the toughest thing has been trying to overcome the emotional and psychological effects of living with this illness. I spent nearly 3 years going from doctor to doctor trying to find a diagnosis, I scoured websites, I created a book of all of my records from July 2007 onwards and so much of my effort was put into trying to help those who were trying to help me figure out what was really wrong. Now that we know and I’m receiving treatment, switching gears in my mind and moving on with my life hasn’t been easy.
A large part of those nearly 3 years I was in and out of the hospital, I was going to various doctor appointments nearly every week and sometimes multiple times a week. I spent a large portion of that time sleeping simply because I just couldn’t muster the energy to get out and do anything. It wasn’t depression, it was my body attempting to heal itself from the numerous infections I was fighting. So often I was either fighting chest and sinus infections or diarrhea not to mention the polyarthritis. At points in time I was on so many medications I lost track of them sometimes.
What does anything I’ve written so far have to do with emotional hurdles? A lot actually. Even though I’m feeling better since I began treatment I still have some problems. I still battle diarrhea on occasion, I still haven’t been able to fully kick the chest and sinus problems that have plagued me since I was a child, the pain associated with those ailments along with the arthritis that has gotten better but has never gone away so every time I start to get the sniffles or a belly ache or I get up from sitting in a chair and my knees hurt so bad I nearly fall down I begin to worry. I begin to worry despite all the positive effects that IVIG has given me that just like the original diagnosis I received of Crohns Disease, that somehow we’re wrong and it’s not CVID even though everything tells us it is. I’ve spent so much time in doctors offices that I began even doubting my own ideas as to what was wrong and I still do sometimes.
I fear that when I go out that I might have a belly accident, it’s happened before. I often turn down invites to activities where there might be a lot of walking because I fear that my joints will catch fire and I won’t have my pain medication around to help soothe the flames. I spend so much time analyzing the sanitation of places I go, objects I touch and the people around me (did that guy just cough and not cover his mouth? Oh god). I’m constantly washing my hands and using that damn hand sanitizer to the point that my hands have at times become so dry that they’ve bled.
Even though I experienced all of the symptoms I’ve listed so far, they haven’t been nearly as bad as they were before treatment yet I still fear all these things coming back in the blink of an eye. These are the psychological demons people with chronic illness face every day even if they are receiving treatment, the fear of what if?
