A common misconception that us Spoonies often deal with is that people can’t wrap their head around the idea that we sometimes muster the strength to live a little. Many days, I put on makeup and brush my hair and try to for once accept an invitation, even if it means I am bed-bound the next day. I will hear things like “you look great… must be feeling well,” or “you made it! Glad you feel better.” However, I politely nod and smile while my heart races and every fiber of my being aches, and I already counting down till I can leave and crawl into bed. Chronic illness is always tucked away, deep within us. Even if for one magical day we did feel “better” we are always still going to worry about when the other shoe will drop.
On the other side of the spectrum, we also have many moments of saying “maybe” to plans when we really mean “no.” I have been guilty of this more times than I can count. I’m getting better about setting stronger boundaries for myself, but it’s taken time and lots of self-love and acceptance. I have learned that while I may not have control over what my body does on a day to day basis, I do have control over what gets my time, focus, and energy on my good days, and if it’s not something that fills my cup, I say no. Even if it’s family. I’ve had to cut ties with some of my closest family members because they refused to respect my boundaries. It hurts not having them in my life, but not near as much as the drain of repeatedly being discredited and disrespected did. Boundaries are there to keep you safe and secure. Just like property boundaries they remind you and others what belongs to you and what belongs to them. So next time you feel that feeling inside, trying to guilt or shame you into saying “maybe” or “yes” when deep down you want to say “no”, do what’s best for you, and your health and well-being. It’s hard at first, but it gets easier with practice. You’ve got this and we’ve got you.
Stay tuned for Episode 8 and 9 as we will discuss more on these topics.