Not "Too Difficult"
"I was reminded that having extra needs does not make you too difficult, too time-consuming, but worthy of compassion and love." -Chanel Miller
I found this quote I had saved on my phone and, reading it again, I remembered why I had saved it in the first place. It's a deeply passionate plea to not feel badly about yourself or like you're a burden to others. The writer urges, "You're not too difficult."
People with RA fight hard to mask their pain
People who live with extra needs, such as having RA, often do struggle with feeling like they're a burden to their family and friends — and to everyone. They constantly worry that they're "too much" for people because of their chronic illnesses and chronic pain — financially, physically, emotionally. And they often work and fight really hard to mask their pain and illness in order to not be a burden. They stifle and stuff down their pain. They pretend and hide. They limp along quietly, hoping nobody notices.
Despite doing patient advocacy work and being open and vulnerable about what it's like living with RA, I still often find myself trying to mask and hide that I have this painful chronic illness.
Not wanting to feel like a burden
Why do we do this? Why do I continue to do this? I think it's probably a common and natural reaction when you have an invisible illness.
You want to fit in with people: at work, at home, with friends and family. You also don't want to be or feel like a burden to anybody, which leads to not disclosing how you're feeling or how much pain you're in.
Having to pretend to be 'normal' and 'stay positive'
I think there's also a fear of making people uncomfortable or causing negativity by discussing your disease. I don't want to be a "Debbie Downer" and drag down conversations, bumming people out.
I also don't want to "ruin" a special event or holiday or anything that I'm doing with others by bringing up my disease (how depressing!). Stay positive! Don't talk about the searing pain that rips through your ankle and shoots up your leg whenever you walk. Don't wince as you hold your glass with swollen, puffy inflamed fingers. Simply pretend that you're "normal" and don't have a serious, lifelong, degenerative illness.
Having extra needs does not make me less worthy of love
Stifling your pain and hiding your chronic illness is not healthy way to live, however. Especially when living with the disease consumes a huge portion of your everyday life. RA is not my identity, and it doesn't define me. However, it's a constant companion or shadow that's always there, either screaming in my face or lurking and waiting to strike at any moment.
Having rheumatoid arthritis does cause me to have extra needs, and there's no getting away from that. But, as Chanel Miller so simply yet powerfully states in her quote, having extra needs does not make me any less worthy of compassion and love. If anything, I need more love and compassion, because living with this pain and illness is not easy.
The disease itself is a huge burden, but I am not. It's OK to have extra needs and to speak openly and honestly about living with this debilitating, life-consuming disease.
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