Superpower Unlocked: Seeing the Invisible

© 2025 Joyclam Photo The full moon shrouded in spectacular clouds after the lunar eclipse, Sept. 7, 2025.

March is one of the Disability Awareness Months, and it has me thinking about not just the disabilities transferred through the bite of an arachnid, but the superpowers as well, just like Peter Parker. One of the superpowers gained through my experience with Chronic Lyme Disease is the ability to see the “invisible.” Chronic Lyme is one of many conditions called “invisible illness,” a disease or disability that severely limits a person in some way, but cannot be seen by anyone on the outside, and thus sufferers are often overlooked in matters of assistance and accessibility. No one can see the colostomy bag or insulin pump under your clothes, or the implants and devices under your skin. No one can see chronic fatigue or chronic pain. No one can see headaches or vertigo caused by fluorescent, bright, or flashing lights. No one can see nausea or allergic reactions to chemical odors and fragrances. No one can see the gastrointestinal distress from the highly-processed food that is often the only offering at public events, vending machines, or the coffee shops where your friends want to meet. No one can see sensory overload, mental health, or early stages of almost any disease. It can be extremely difficult to leave the house and go anywhere or do anything, but since your illness is “invisible,” you can be judged harshly for, if not denied altogether, use of handicap parking, mobility aids, or wheelchairs, let alone an awful lot of patience, compassion, and understanding.

Society is built for a healthy, able-bodied, neuro-typical population. But by general statistics, at least 25% of us are not healthy, able-bodied, or neuro-typical. Yet society (or those who create it and tax us for it) still demands that we contribute to this thing in which we are not even included. This gives rise to the “social model of disability,” which proposes that people are not necessarily disabled in and of themselves or by their conditions, but rather are most disabled by a lack of consideration, accommodation, and conscious inclusion in the social structure and civil engineering at large.

Knowing how to ask for help is an essential skill, but when no one responds (often because they simply don’t know how or lack the resources themselves) you have to help yourself. And society is even denying us that!   When we go through the stages of processing our own major life change and learn to ask for help, we are called lazy, selfish, and ignorant; told to pull ourselves up by the bootstraps and power through; told to stop wallowing and feeling sorry for ourselves and get out there and rock the disability (like that person on TV, who just so happens to have more years of therapy, more caregivers, more visibility, and more money than we do but, pish-posh, it’s all about willpower!)

When I got Lyme, neurological complications with Bartonella and Babesia, Mast Cell Activation Syndrome (allergic to everything), chronic fatigue, chronic pain, and extreme nervous system sensitivity, I learned the pretty harsh lesson that society wasn’t built for me. I didn’t belong here, which only exacerbated life-long feelings of not fitting in and not being good enough. I wasn’t welcome, even by the very people who insisted I was but then got really irritated and frustrated with my many atypical needs. When you suddenly find yourself disabled, it’s really easy to think your Earth membership has been revoked and it’s time for you to eject. (I’m going to be blunt: sudden disability is a major suicide trigger.) And no one could convince me otherwise, because their actions and votes didn’t match their “encouraging” words. Legal social disability benefits are horrifically expensive and complicated to apply for. Few people, even friends and family, had the resources, time, knowledge, or patience to adapt to my lifestyle. It was my problem, I had to find my own solutions... and f*ck me if I was too sick to participate.

So first, I learned how to see myself, and I had to unlearn that I was being "selfish." I knew that I was me, a human being with a mind and a soul, not a statistic, not a population sample, not a “sick person” or a “disabled person.” I was Jess (granted, I even quite lost myself for a while, too). And, despite all my best (or worst) intentions, I was still alive on this planet. But with an invisible illness, and so little time for listening ears to understand, I was going to have to be my one and only advocate, since no one else believed me. I was going to have to find my own solutions, and I was going to have to execute and utilize them even when everyone around me treated me like I was insane. (And yes, I heard what you said about me behind my back when I was at my sickest. You’ve inspired this post and my life’s work. On behalf of all the invisible that I am now extra-committed to shining a light on, thank you for being an as*hole!)

I built a new world and a new society for myself. I cleaned up my own environment so I could breathe air free of chemical fragrances, VOC’s, smoke, pet allergens, and mold. I cleaned up my diet so I could maximize my nutrition, minimize my medication, and reduce as much inflammation, pain, allergic reactions, GI distress, infections, and psychiatric episodes as possible. I have massive stockpiles of natural teas, herbs, medicines, and first aid to help and heal myself without a doctor (I have so much medical trauma). I cleaned up my personal care and toiletries to avoid rashes, allergies, toxins, and endocrine dysregulation. I keep water bottles, pens and paper, tissues, waste baskets, books, and other frequently-used items in every room, sometimes in every corner, in case I’m unable to get up. I have multiple levels of lighting in every room – dim, medium, bright – and use warm bulbs that resemble natural sources of light, because light sensitivity can fluctuate. I have books that tell me how to treat almost anything, since the doctors have given up on me. I have water filters, air filters, and I frequently deep clean and sun-dry anything that could harbor mold. If I had more money, I’d be committed to natural chemical-free furniture and bedding, but alas… Lyme is expensive and creatives are better suited for living under bridges.

I created a safe life for an invisible person: me. And what do you know, safety and visibility heals. Safety and visibility enables. I saw myself, and then suddenly I saw everyone (survivor’s guilt is a whole other brutal topic). And for the 99 people who judge me for the "weird" way I keep my house, host events, and live my life, it is so worth the ridicule to see the relief and appreciation on the face of the 1 person who has been longing for similar safety and visibility.

My vision only got sharper when I broke my ankle and spent 6 months on crutches/in a wheelchair, and 6 more with a cane and frequent requests for assistance. I could not believe how much easier my entire illness was when I just had a recognized “status symbol” granting me the privilege of help. (I can't believe I didn't think I deserved it for 6 years... how much harder did I make it on myself, being riddled with shame and insecurity?!) And I saw that it was still so much harder than it had to be, still for lack of visibility. I saw how wheelchair ramps were on the opposite end of the handicap parking/bus stop; the door-opening buttons were on the opposite end of the entrance ramp and nowhere near the door; there was a handicap stall in the public bathroom, but the restroom door itself was too heavy to open and had no button; the power chairs in the stores were often not charged, and sometimes far from the entrance (I got stranded in a Target parking lot once). The elevators to underground public transport are often far from the street, and often out of order! I once had to push a man’s wheelchair even over the handicap ramp on the sidewalk – he was stuck in the crosswalk with oncoming traffic, and the ramp itself had too high a curb to wheel over! Most city shops are too narrow for a large person, let alone a wheelchair or oxygen tank (speaking of which, why aren’t we enforcing the no-smoking zones?). Don’t even get me started on the horrible steps of the old trams of Budapest. Classes, workshops, even doctor’s offices are completely inaccessible, 3^rd floor, no elevator, steep basement stairs, long walks. Not to mention everything is still doused in air fresheners, fluorescent lights, inflammatory food, booming subwoofers, high-pitched electronics, flashing lights, pulsing OLED screens, and AI images (unnatural AI actually disrupts human neural networks and can be quite debilitating to highly sensitive people).

I can see how this world would never have worked for me if I hadn’t recovered (and oftentimes, it still doesn’t), why it was so extra devastating and isolating to be chronically ill, and I know how many millions of people continue to be disabled and invisible precisely because it doesn’t work for them either. And it doesn’t have to be this way.

Those in power CHOOSE to dump resources on weapons, war, manufacturing, AI, profits, and power rather than invest in an equitable and accessible system. And in democratic systems, WE CHOOSE to elect them even though they work against our own livelihood. But this is beyond me. Politics and activism is most inaccessible to a tired and sensitive brain such as mine.

So what can I do? What can I choose?

The good news is, one of the most powerful things any of us can do, especially as a minority, is to know and be our authentic selves and then share it with the world.  I learned how to make my own little society work for me, so now I know how to make life accessible to at least a subset of invisible people (granted, I cannot serve all). I can choose not to go back to my old life, ignorant of my privilege, and keep my life an enabling place. I can choose to keep all those skills I learned, as a toolbox should I myself fall ill or disabled again (we are ALL only one second away from being disabled!), and as a wealth of privilege that I can share with others. I can keep preparing healthy food and offer diet-friendly options to others who are just starting and feeling left out in social spaces. I can keep my home chemical-free and offer a safe environment, or fragrance-free companionship to others by not being a walking parfumerie. I can build time into my schedule for rest if I need it, and emergency assistance if someone else needs it. I can use my voice to advocate for accessibility even when it makes people uncomfortable with its complications and inconvenience. I can stop judging and start helping. I can stop running away and start seeing, little by little as I emerge from my own PTSD.

But this too requires other superpowers: with great vision comes great empathy and compassion, and this will easily crush you if you don’t also build great capacity, grace, patience, and balance. There are reasons we don’t receive instant healing, sudden spiritual gifts, or spontaneous enlightenment; they are heavy things that require a strong foundation, one that can only be built through time and testing. To leave Plato’s cave is to be blinded by the light; seeing is a process that must be respected, and never rushed.

Slow down, you crazy child.

But wouldn’t you know, this society is not built for patience, either. Looks like I have to create that for myself as well. #snailgirlspring is here!