We’ve all heard it said that hindsight is 20/20 and I’ve been thinking a lot about what my life was like when I first got sick which was well before I was actually diagnosed with sarcoidosis. I’ve been thinking about it because a family member recently made a comment that got me thinking about how difficult my life was and how little I think anyone understood how difficult my life was during that time. Even, I didn’t realize how bad it was.
This family member made the comment that I seem to be reconnecting now and that I had distanced myself for a long time. I’ve been thinking about this comment a lot. And I don’t think it is accurate. I was not distancing myself. I was sick. I had no energy. I didn’t feel good and I was in a fog. My life was work and sleep and it was only those things because that was all that I could handle. My job sucked the life out of me. And, I let it. I let it because I didn’t even realize it was happening.
I was functioning. I was not living. And, I had no real idea this was happening. It was such a slow and insidious process that it crept up on me and little by little, my idea of normal had changed. I forgot what feeling good felt like and I didn’t even know it. So, I was not distancing myself. I was sick.
For a few years, I walked around in a foggy haze of painful discomfort that had become normal to me. I didn’t even know I was in a fog and it can hard for someone who has never been sick to understand this but denial is powerful. We don’t want to believe something could be wrong with us so we make excuses and I did that until my body would no longer allow it. In the process of excuse making, I unknowingly withdrew from family and friends. If they recognized this was happening, they didn’t say anything to me about it.
It was never my intention to alienate anyone or to isolate myself. I was sick. I hadn’t realized just how sick. I was slogging through life. I thought that was normal. Looking back, a lot of things make a lot more sense now that did not make sense then. I had no real idea then that feeling well is how you are supposed to feel. It had been so long since I had felt good. I forgot what having energy felt like. I became accustom to what was not normal. I was sick.
Since my diagnosis and since I started treatment, I am still not well…exactly. But my perspective has changed entirely. I understand now what I did not know then. I can look back and see that I was adrift and I was drifting because I was sick. I was utterly unwell.
Now that I know something was wrong, is wrong, I see things more clearly because my fatigue and my pain have context. I am sick and there is a strange comfort in this knowledge. Armed with this knowledge, I have not only a better understanding of those lost years, I have an improved ability to manage my time and my energy which helps me prioritize what is important in my life and what is not.
I don’t know if my family will ever understand the darkness I was in during those years of sickness before my diagnosis and even right after it. I don’t expect them to because at one time even I didn’t. But the reality is, my body was broken. It still is. I was sick.
I still am.