When I was 3 years old, I chipped my tooth trying to climb down a tall set of stairs on my own. Asking for some help or saying, “I can’t,” has never been in my character. This worked out well for me for most of my life. I took on every challenge without fear and excelled in everything I participated in. I was always self-motivated and strong in the face of adversity.
Being diagnosed with Undifferentiated Connective Tissue Disease made me doubt all the strength and independence that had for so long shaped my identity.
When I was tired and could barely get out of bed, one of my biggest concerns was that people around me would think I was just lazy and unmotivated. When I was sick, I was more worried about having to ask someone to take care of me than actually getting better. I would cry just because I was tired of lying in bed with fever, infections, and aches. I felt so weak and out of control of my own body, and at the same time too prideful to ask for help. I knew how to be strong, but with my illness I had to learn to lean on others for the strength that I no longer had.
When I opened up to my friends and family about my symptoms and how they could help, UCTD became so much easier to handle.
They were all so eager to make my transition as easy as possible. My best friend would help me remember to take my meds on days that I was having brain fog. My step-mom always reminded me to slow down and rest when I was feeling weak. When I was having a bad day, my boyfriend was always there with a word of support and love. My dad was always checking on me at school to make sure I was still able to enjoy being a 19 year old in college, despite the new limitations I had.
Opening up to family and friends about being sick is not always easy though. No matter how hard you try to explain, sometimes it’s hard for someone not going through your challenges to understand you. I can still be tired even after a full night’s sleep and day of rest. I am eating, but I can’t make myself stop losing weight. I know I don’t look sick, but I really am. I have found that consistent repetition is essential to helping my loved ones understand what I go through. Although it can be annoying, I know that they love me and want to understand my illness so they can help me live a better life.
In the beginning, being sick felt like the end of my life. I felt helpless and not like myself at all because I was trying to handle everything on my own.
Reaching out for support has been the best coping mechanism for me.
And asking for help and admitting that I can’t do it on my own doesn’t make me any weaker or less independent. My strength is in letting go of pride for the sake of my health. My independence is in taking the initiative to set up a system of support for myself. Being sick hasn’t robbed me of my character, but has shown me new ways to express it.