I might be the one who is physically unwell but my sarcoidosis belongs to both my husband and I. This is not just my disease. We both endure the emotionally disquieting unpredictability of what my body will and won’t do each day. I’ve lost a lot but so has he. I’m not the same woman he married. In some ways, I hope I am better because I realize how important the real things are…like our marriage and my love for him. But, I’d be foolish or naive not to acknowledge that my diminished energy puts a damper on our lives together.
During this month dedicated to sarcoidosis awareness, I feel that I would be remiss if I did not take time to acknowledge that while there are parts of this journey I walk alone, most of it I walk hand in hand with my husband, my partner and my best friend. I would not be where I am without his unconditional and unwavering support. Yet, it is the very support that I know takes a toll on him. The stress of everyday life with someone who is chronically ill, unpredictable in their energy levels and foggy in the brain, is not easy. He takes it in stride and rarely lets me see his worry, his grief or his pain but we know each other too well for me not to know it is there.
This disease is not just mine. It belongs to both of us and I believe anyone who unselfishly stands by someone chronically ill deserves the courtesy of some kind of acknowledgement that we are aware of your sacrifice and that even when we fail to say it, we understand this disease belongs to more than just ourselves. It also belongs to any one brave and kind and loyal enough to trudge this uneven path of mixed up chaotic medical mayhem with us.
In the spirit of raising awareness, I am want my partner to know that I am utterly and completely aware of his commitment to me and that there simply are not enough words to share my gratitude and respect for him. This disease is not just mine. It belongs to both of us and together we are committed to living and loving our lives together despite whatever it might throw our way.