One of the difficult parts of having this disease is pretending that you are okay when you are not. I believe at this point in my life I have become a master “pretender”. It is difficult to honestly lie to those I love about how I am feeling, but it seems a better alternative than to tell them the truth and know that they are worrying constantly about something they cannot control.
I'm not okay, I'm just good at pretending I am
I see their faces when I am visually sick. I can see the hurt in their eyes, and I can hear the worry in their voices. I can see their body language shift from normal to helpless. I can notice these things, even when they try to hide it from me. So, I have learned to mask myself because it is easier. It is easier to say, “I am feeling good” than to say, “it burns when I breathe."
It is easier to just say I am “I am not hungry” than say, “it hurts to eat." It is my way of protecting my family because I would rather pretend that I am okay and suffer in silence than drag them with me. I can walk slow and limp, but I can go on walks with them but, each step is agonizing from the neuropathy that burns my feet and feels as if I am walking on glass, and my joints are killing me, so my hips, knees, and ankles are also painful.
Hiding behind the pain
I can act as if the walk is not killing me inside so I can feel the beautiful breeze on my face and see the smiling faces of my family as we all walk together. I can wake up early to attend breakfast with my loved ones even though they will never know I never slept because I was up all-night coughing and struggling to rest. I can do it because I am good at it.
The darkness under my eyes is easy to cover with makeup and it is something I do often. It gets harder some days to cover up how I really feel and those days I do have to surrender and just be myself and allow the help and allow them to worry but I do not like it. It is not anything against my family or my friends, but it is me not wanting to worry them so much because I know they do.
I just want to be strong for myself
It is hard to have doctors tell you things and see the shifted faces of those you love fill with sorrow and helplessness. I would rather be in my room and at times cry or take care of myself because this is my baggage to carry. I am truly grateful for my family because they truly help me when I ask and they are always there for me, I thank my husband for everything he does but, in my heart, I do not want them to suffer knowing the full amount of what I go through because they would feel more helpless.
I just want to be strong for myself and them, even if it means I need to wear a mask every once in a while.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?