I did a quick video for a Graves’ support site recently and one of the things I stressed was the other side of the coin. I completely understand how frustrating it can be to try to explain this disease to others, but I can say that until I was diagnosed with this horrible disease, I did not know it even existed, let alone the devastating effects it has on those who suffer from it. As we struggle and focus to just get through a day, while battling all of the physical and mental effects, we often focus so much on all of these devastating effects that we are not aware of the fact that, subconsciously, we are turning our backs on most other aspects of what was our normal lives. This includes our loved ones, who are very conscious of the fact that the person they love is deteriorating on a daily basis before their eyes. More than likely, unless they too have had this disease, they will not understand the cause, only the effect.
After my diagnosis this past September, I then reflected on all of the ways I withdrew and treated those I love, including the most important person in my life, the love of my life.
I saw it as an accumulation of months of actions that are NOT me, my loved ones lived it and saw it every day during those months. I am now heavily medicated as my endocrinologist attempts to get my TSH level to even register on their tests (4 straight tests at <.01), but our loved ones are not undergoing treatment or taking medication to try to deal with this devastation. They can continue to medicate me, remove my thyroid or pump me full of RAI, but none of this will cure the broken heart I have because of my withdrawal.
As I wake up each morning with my numerous challenges due to Graves’, I still feel my broken heart and all of the regret that I know will stick with me forever. I look back and see a person I don’t recognize or ever want to be again and I hurt to know she lived it and saw it every day during those months. I lost interest in everything and what I did do was a struggle and done with so much effort, physical and especially mental, and without the passion that I have within me and that she deserves. There is nothing worse than trusting, believing and relying on a person who promised their life and love to you, only to have that person withdraw from you with no explanation and, despite her constant and sincere desire to communicate, be met with no effort. That was me as I had no idea that I was slipping daily further into this abyss. She tried to tell me we were losing our connection, both physically and emotionally … and I was blaming everything on her, others and I ultimately was so tired from just making it through another day, that I was just spinning with no direction or understanding. Then I was diagnosed … but the damage was already done. This disease stole my passion, my mind, my body, but it will never steal my heart or soul nor the love I have for her.
Try to remember that this disease hurts our loved ones just as it hurts us, in a different way, but nonetheless it attacks us all.