I am a 38-year-old mom of four children, and I work from home. My hair is almost always in a top-knot, and I wear workout clothes all day, every day. I might have on mascara and tinted lip balm, at the most. I drive a mini-van, sip coffee from my thermos, and have an affinity for all things Target. I look like every other frazzled mom, desperate to find balance and not completely melt down. But I’m not the same as all the other moms, because I live with two autoimmune diseases, type 1 diabetes and lupus, plus a bonus struggle, anxiety.
It’s exhausting to have autoimmune diseases, and it’s even more exhausting to feel like I have to justify being “sick” to others. When someone tells me I don’t “look sick,” I want to ask, what does ‘looking sick’ even mean? When others base how they treat me based on how I appear, they are ignoring the fact that many women suffer from invisible illnesses that impair our daily lives, sometimes immensely. This adds to the battle we already face from being chronically ill. Invisible illnesses include anxiety, Lyme disease, depression, diabetes, Crohn’s disease, rheumatoid arthritis, bipolar disorder, ADHD, lupus, PTSD, some cancers, and many, many more.
I’ve been told more times than I can count that I don’t “look sick.” Therefore, I am constantly asked to verbally prove that I am, in fact, not like everyone else. This usually occurs when I need assistance with something that is generally accessible and easy for a typically functioning person. Now, as a woman in her mid-thirties, I sure don’t indulge every person who asks me to show some sort of illness card. Time and experience have taught me the power of ignoring, walking away, or straight-up calling out rude people. However, do the inquiries and interrogations get under my skin? Despite me considering myself to be a tough, resilient person, yes. Sometimes the constant demands to prove that I’m different depresses and frustrates me. It’s another layer on the illness cake, and it sucks.
When someone learns I have an invisible illness, I typically receive one of two responses. The first, and the one I appreciate, is that they will share with me that they know someone with the same disease. The person tries to relate to me. I’m cool with that. As long as they don’t go down the path of, “My grandma has diabetes too, and she had both her legs amputated.” Here’s the deal. I don’t want to hear your health horror stories. But if you’re looking to meet me halfway or walk a mile in my shoes by sharing what you know about my disease, thank you for your effort. Please proceed.
The other response I receive is two-fold. The person doesn’t doubt my diagnosis, but makes a rash decision that my disease isn’t all that bad based on my appearance. If I look good, I must feel good, right? (I’m not bragging that I appear to be a runway model. As previously shared, I look frazzled most of the time.) Being young-ish, a busy mom, and someone who is able to work puts me in the “you’re fine” category. I do offer some education if the person seems willing, gently correcting their inaccurate beliefs about my diseases. This can go one of two ways.
Either the listener is empathetic and open to education, asking probing (but appropriate) questions like, “Do you have to take insulin all of the time?”, or they launch into a lecture. The lectures are just as bad as the horror stories. I’ve been offered so much pseudo-science advice that I could write a book titled, What Not to Say to a Type 1 Diabetic. Fair warning. We’re about to go down a rabbit hole.
I’ve been asked if I’ve tried any or all of these diets: gluten-free, KETO, paleo, vegetarian, vegan, sugar-free, and more. Did I visit my chiropractor? Apparently, chiropractors can cure diabetes! If I would just diffuse a mixture of essential oils, meditate, or, for the religious folks, pray harder and more. Maybe if I just slowly weaned myself off insulin, I’d be cured, they say. Um, no, Karen. I would be dead. But thank you. Probably the worst-of-the-worst is when an MLM saleswoman relentlessly messages me that she has all the shakes and supplements I need to be on a new wellness journey. I’d love to see her medical degree. Oh, right. She doesn’t have one.
I’m certainly not going to conceal my diseases to make others comfortable. I’m not ashamed of my illnesses, though, yes, some days it’d be really nice if they’d just go away. However, I have come to terms with the fact that this is the only body I have, and with the help of amazing doctors (including a chiropractor, Karen), a therapist, a healthy diet, prescription medications, supplements, prayer, yoga, and meditation, I’m managing. However, I still have hard days. Days when I need assistance, accommodations, and a good dash of patience and kindness.
It’s not an option for me to put on an “I’m fine” mask in order to avoid questions and assumptions from others. Sometimes my struggles are very obvious, like when my blood sugar drops and I need a juice box and a seat ASAP. I can either spend my energy trying to hide what’s going on inside my body, or I can name it, claim it, and deal with it, even if that means others know what’s going on.
That being said, what all of us want, no matter what we encounter in life, is empathy and more listening (less talking). We need support, humor, forgiveness (I cancel plans often), and encouragement. We don’t need tips, heartless jokes, or rapid-fire questions. How many times have I been asked, “Are you sure you should eat that?” or “Don’t you have the bad kind of diabetes?” Yuck.
I’m not wallowing in despair or asking for pity. Neither of these is helpful. I can’t stand when someone leans in too close to me and whispers, “How are you?” In fact, I work very hard, every single day, to live a joyful, peaceful, and balanced life, though it is certainly more difficult with two autoimmune diseases lurking in the background. However, I am asking that the unsolicited and unproven medical advice stop, and that when I tell you that I’m sick, you believe me. I promise that no one opts-in to a life with invisible illness.
Living with two autoimmune diseases plus anxiety means tons of medical expenses, appointments, challenges, and stress. Like me, many woman are working hard to try to keep their health in check while working, raising kids, being a partner, and trying to have some fun once in a while. Don’t be that person who puts another damper on our day. When we tell you that we are sick, offer to buy us a coffee, give us a high-five, or tell us how badass we are. Anything else is just selfish.