The flowers are blooming, the allergies are starting, and now all of a sudden my social media timeline is filled with colored ribbons and hashtags. May isn't just about spring blooms and Mother's Day brunches - it's when most chronic illness communities take their voices and use them to be heard.
Having passed through the health care system, I've learned that awareness months are not mere symbols. They're lifelines that prop up research, validate experience, and strip individuals to their isolation in the day-to-day fight. This month neatly points towards a few illnesses that have a tendency to exist just below the surface, imperceptible to the naked eye but life-transforming to their victims.
That butterfly rash across the cheeks and nose is the most obvious sign of lupus, but it's only the tip of a much, much larger iceberg. Lupus affects 1.5 million Americans - primarily women - and can damage almost any organ system in the body.
What is especially callous about lupus is how unpredictable it can be. You may be fine one day and then, the next, struggle with fever, aching joints so bad you can't even grip a toothbrush, and exhaustion so complete that taking a shower is akin to running a marathon. The uncertainty makes keeping jobs, relationships, and futures almost impossible.
Those fleeting symptoms that come and go? The light sensitivity that provokes flares? The swelling that travels from the joints to the kidneys to the brain? They're all symptoms of an immune system that has lost its ability to distinguish between foreign attackers and the body's own tissues.
"You're too young to have arthritis!" If I gathered a buck every time someone says this to a new patient presenting with swollen joints, I could fund a research institute. Even causing 54 million Americans - including 300,000 children - arthritis remains viewed as something that solely occurs with getting older.
Reality check: over 100 types of arthritis. Osteoarthritis results from wear and tear, but rheumatoid arthritis is an autoimmune disorder in which body targets linings in joints. All three of psoriatic arthritis, ankylosing spondylitis, and juvenile arthritis have their own course.
For people with arthritis, simple day-to-day tasks become monumental challenges. Opening a jar of pickles, sending emails to pals, or going up stairs can trigger pain that varies from annoying to debilitating. Morning stiffness may last for as long as a few hours. Pursuing weather fluctuations that bring on flares that can continue for days. Excusing yourself for having to reschedule the umpteenth time? Energy-draining.
The statistics are staggering - 1 in every 5 Americans experiences a mental illness annually. And yet we still whisper about depression, anxiety, PTSD, and bipolar disorder as if they're moral lapses and not actual states of health.
For the chronically ill, distress is riding shotgun with the body. It's not depression because they're sick - it's chemical changes in the brain that result as an unintentional byproduct of chronic inflammation, medication side effects, sleep disorders, and trauma over having to struggle their way through a medical system too often prioritizing anxieties over.
That friend who seems flaky? Maybe really struggling with anxiety so severe they can't even go out the door. Your coworker who seems grumpy? Maybe struggling with depression that makes all little things feel like it's a task of Herculean proportions. That person who seems "dramatic" when it comes to health? Maybe dealing with medical PTSD from being chronically suspicious of healthcare workers.
Suppose your body's pain volume knob was cranked all the way up and stuck there. That is fibromyalgia - a neurologic disorder that strikes an estimated 10 million Americans and amplifies pain signals, ruining sleep, energy, and thought processes.
The daily life is characterized by pain that wanders the body like a nomad, pitching its tent in your shoulders one day and hips the next. Sensory processing is off, so that soft hugs hurt and common environmental stimuli are blinding. "Fibro fog" can make you forget words mid-sentence or lose your way to familiar places.
Perhaps most enraging is the diagnostic experience - the average patient sees 3-5 docs in 5+ years before finally being diagnosed, and is informed that they're "just stressed" or "need to exercise more." At this point, many have lost their job, relationships, and sense of self.
Remember that "double-jointed" kid at school who can bend their thumb all the way back to their wrist? Having an unusually loose joint can be a fun party trick, but for individuals with Ehlers-Danlos Syndrome (EDS), it is a symptom of a potentially severe connective tissue disorder.
Collagen is the most common protein in your body - the scaffold that gives structure to skin, organs, blood vessels, and joints. When it's defective, like in EDS, the implications sound throughout the body. Joints come out when doing basic things like grasping for a glass. Skin tears from low-impact trauma. Control of blood pressure collapses, causing dizziness and passing out when standing.
Most EDS patients appear completely normal despite fighting with severe pain and disability. They appear athletic due to their flexibility and end up being asked about their limitations. Most are treated by 10+ doctors for decades before diagnosis, battling doctors in connecting their apparently unrelated symptoms.
"But you don't look sick!" Those are worse words for the 3 million Americans living with Crohn's disease and ulcerative colitis - both of which are lumped under the catch-all inflammatory bowel diseases (IBD). They are chronic inflammatory diseases of the gastrointestinal tract that result in mouth-to-anus inflammation, and they range from being a nuisance to deadly.
May 19th is World IBD Day, which brings to light symptoms that people hide because of shame and humiliation. Let's be real -- pooping, bleeding, and cramping aren't exactly going to make the cut for daytime talk shows.
Behind the locked bathroom door, IBD patients suffer from:
What's maddening about IBD is that it can't be viewed and can't be predicted. Someone can look completely normal while battling intense inflammation within. They can be good in an hour and be racing to the bathroom 20 times the next hour. Most patients require large immunosuppressants, surgeries to have destroyed intestine removed, or ostomy bags when damage becomes too severe.
The average patient presents with symptoms for seven years before they're diagnosed, typically being sent home with "it's just IBS" or "you're just stressed." By the time they're treated, many have already experienced permanent damage to their intestines and medical trauma from being dismissed.
Though they impact millions and rank among the top healthcare burden cost for all chronic diseases, research in IBD is underfunded relative to its scope. This May, more awareness erases stigma, increases research funding, and enables those silently suffering to know they are not alone.
You can quickly scroll past awareness posts for illnesses that you're not suffering from. But here's the way the campaigns should be important to you even if you're healthy at the moment:
If you're ready to move beyond awareness to action, here are ways to make an impact:
May's awareness campaigns remind us that chronic illness is not rare, unusual, or someone else's problem – it's part of our shared human experience. The more we understand, the more compassionate the world becomes – for others and for ourselves, should the day come when we need it too.
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