Whether I am with my family, my friends, a visit with my physician, going to church, talking with the neighbors, or even on a call with my therapist I find I am constantly having to advocate for myself every where I turn! Life with a chronic illness is not only exhausting from the daily ongoing challenges, but also from the challenges of just being a human trying to relate to other humans. Especially when your chronic illness is invisible, or for the most part invisible, it is extremely challenging for other people to understand what our struggles and challenges really are like leaving us in a space where we are forced to continually explain ourselves, explain our situation, advocate or even defend ourselves at times against others and misconceptions, or misguided expectations.
Personally, I am an extroverted person, I have had various jobs/careers in my life all revolving around communicating with other people and in general I get along very well with other people, make quick friends, am well-liked by people I interact with, and I am even great with sales and marketing which is definitely a ‘people-person’ skill. Despite all of that, I have had to learn constantly new skills of communicating and relating to others in my life through my chronic illness which has been voraciously challenging at times… so often people either say things that I find very upsetting or hurtful, they speak with a lack of compassion and empathy, and even when I know they are well-meaning they can be so far off-mark to communicate in a way that is actually helpful to me in that moment in time. I feel like I needed to be a trained psychologist just to exist through a day communicating with others through this serious chronic illness. Thankfully with time, loads of patience, compassion for others and understanding and forgiving when they may fall short, and lots of help and tips from great therapists through the years I have managed very well… and exhausting as it may be, I will continue on because having these beautiful humans in my life is so worth all the extra effort it requires!
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