Unmasking Chronic Illness While Autistic
Being autistic is already challenging enough. But what’s even harder is unmasking chronic conditions. How do we advocate for ourselves when no one has even heard of what we are experiencing?
Being autistic is already challenging enough. People often assume I’m allistic and then after finding out I’m neurodivergent, they tend to say things like “I’d never be able to tell,” or “Wow, you do so well for yourself.” I know they mean well, but this reinforces ableist notions that masking our autistic traits makes us more “normal” and “productive.” Not only can masking get excessive and become unhealthy, but many autistic individuals cannot mask at all. I constantly have to navigate a world that says accommodations are a luxury, and after fighting for support, they can easily be questioned because I look so “high functioning,” even though I’m a moderate support needs autistic. But what’s even harder for me is unmasking chronic conditions.
For many autistic (not all) individuals, chronic conditions are a part of our experience. When I tell people that I am considered chronically ill due to the number of chronic conditions I deal with regularly, they are even more taken aback. I look so “healthy” from the outside, and most will never see the struggle it takes to simply get out of bed every day. It's even more shocking to folks when I show up some days using mobility aids like a cane. I just recently mustered enough courage to show up with a mobility aid in public spaces, even at work functions. It is hard and I get a lot of stares, questions, and sympathetic looks. It's as if my invisible disabilities have become more visible when I physically “look” disabled. I’ve been conditioned to see this as appearing “weak,” which is why I refused to admit I needed aids for years. But the aids help me significantly, and can now walk longer distances without the fear of losing my balance or dealing with presyncope (pre-fainting episodes) as frequently.
What is Chronic Illness and Why Does it Matter?
Most people don’t have a clue what it means when someone says they have a chronic condition. Many will think of something like a chronic backache. A chronic illness is a reoccurring or always present condition in the body that causes physical symptoms of some kind. There’s a suggestion in some research that autistic individuals are more prone to having chronic conditions, but no one is completely sure. What we do know is that chronic illnesses can be caused by autoimmune, autonomic, or other types of dysfunction in the body, and exacerbated by stress and trauma. Examples would be Ehler-Danos Syndrome, POTS, or chronic fatigue. For me, that means EoE (eosinophilic esophagitis), allergies, gluten intolerance, GERD (gastrointestinal reflux disease), a sleep disorder (doctors assume narcolepsy), dysautonomia (possibly POTS), PMDD, hypermobility (still assessing the cause), and a few more that are suspected. Essentially meaning that anything from eating the wrong thing to standing up too fast upon awakening could lead to health complications like dizziness, low blood pressure, or discomfort.
Many of these chronic illnesses are invisible disabilities, meaning that you cannot see them at first glance and many go unsuspected for years, but they complicate everyday tasks. This adds to the dynamic of shame. Many of us have already been gaslit in the medical field and within our communities for being “overly sensitive” or “making things up” because we were autistic. Now we have to seek help and accommodations for something else nobody else can see. It's often an exhausting and judgemental process. You can see then why it feels like when we admit we are disabled by an invisible condition, it can seem as if we are surrendering to being weak and vulnerable when we ask for help or use accommodation. I felt this way for years, but it’s simply not true.
Being disabled does not mean we are any less capable of achievement and success, it simply means we have a harder time doing things society deems as “simple” the exact way society says to do them. For instance, I have never learned how to drive and do not plan to right now due to the nature of the chronic conditions I deal with, but I love to travel and am very active in social groups and community spaces where I feel welcome. A lot of people don’t understand this, and it's often a point of discussion. “Wow. You’re 22 and don’t drive? Why?” Moreover, I often struggle with things like laundry, dishes, self-care tasks, and remembering to eat because of a combination of brain fog, physical limitations, and focus challenges. But I still manage to do all of these things with adequate accommodations and help. Does this then mean that I cannot run a nonprofit, work a job, lead a project, or go to school? Not in the least bit.
How to Unmask Chronic Conditions
To me, unmasking applies to more than just autism. I believe that unmasking can also apply to chronic illness, periods, and disorders like ADHD and GAD (generalized anxiety disorder). I’ve spent years masking discomfort, my need to take certain medications, my need for mobility aids, and my need for scheduled breaks, rest, and mental health time. I’ve spent hours upon hours secretly dealing with the effects of chronic conditions, like digestive issues and extreme fatigue, working hard to appear perfectly “fine” on the outside. Unlike temporary ailments like colds and the flu, chronic conditions typically don’t just disappear after treatment. It’s not a matter of a constant “feeling better,” in fact, some days I may be “feeling better” and the next few days or weeks I’m not.
Chronic illness is chronic, it tends to pop up when I’m stressed or when my immune system is overworked. Sometimes, it has no reason to appear, it just does. That’s called a flare-up. Physical therapy, psychotherapy, and doctor's appointments fill my calendar when I’m not working, as I try to unpack and address the many challenges my body faces daily, from swollen joints to horrendously painful periods. I am the one whose body is fighting every day to thrive amid the daily assaults on my energy and comfort. If I need a shower chair to avoid fainting due to prolonged standing, if I need a cane to help me stay balanced and safe, if I need to use a wheelchair when I visit parks that require lots of walking to avoid presyncope, and if I need to ask fifty times to ensure a venue has proper allergen and dietary information on hand to avoid anaphylaxis, I will and should not feel ashamed to do so. Chronic conditions make me think critically about every activity I participate in and the foods I eat, as every aspect of what I do in a day affects how I feel when the next day comes.
So, I resolved that this year, instead of holding back my feelings, pushing myself beyond my forever fluctuating limits, and faking like everything is okay when I’m struggling, I will ask for what I need and not be afraid to take time to recover and heal as much as possible. This does not mean blabbing about my health challenges all the time. Sometimes, it's just telling someone I need a break or that I’m struggling. How many times have I answered “I’m doing great,” to someone who asked how I’m doing even when I wasn't doing great at all? A lot. That’s masking.
I’ve been scheduling in time for rest-oriented breaks during my workday to ensure I’m the most productive, optimizing my travel plans and daily schedule to avoid early morning activity (when my brain is most foggy and my body the weakest), bringing safe foods and medications with me in my essentials bag, and sharing my needs and challenges with others. Sometimes, this means requesting to leave early from a conference instead of suffering because recent travel caused a flare-up, providing for a quicker recovery time and less stress on my body as a whole.
Either way, I believe that there are so many people who don’t know about those of us with chronic illnesses, invisible disabilities, and neurodivergence, and it would be great if the world was built functional enough for us to thrive naturally, but it is not. Accommodations and support systems help us thrive in a world that is not built for us. They are not luxuries, special treatment, or optional “perks” of being disabled, they are fundamental rights for us that make it possible for us to be productive members of society. I will continue to share my journey as I reclaim my identity and rediscover the amazing thing called my brain, and I hope you will do the same. Our voices matter and people need to know that mental health days are life-saving, rest is productive, and just because someone does not “look” disabled doesn't mean they aren't. I’ve spent too many long years in silent suffering because I was afraid of being seen as incapable. But I am capable, and I don’t need to prove that to anyone but myself. I don’t have to look “tough” all the time to be respected. I need to be there for others and take care of myself, acknowledging my body’s needs and limitations. To me, that’s what unmasking is all about.
***Note: I understand experiences will vary for each person and I do not intend to speak on behalf of all disabled, chronically ill, or neurodivergent persons when I write these posts.