Chronic &
Capable

People often think Wilson's Disease is purely a liver disease, but her neurological symptoms affect how she moves, thinks, eats, and functions on a daily basis. It's not just physical — it impacts everything.

A system where people don't have to fight to be believed or to get care. With neurological conditions, symptoms can be misunderstood or dismissed, which delays diagnosis and treatment. She'd also change how expensive long-term care is — managing a chronic condition shouldn't come with constant financial stress.

It's okay to grieve the life you thought you'd have. Getting diagnosed can feel like everything changed overnight. But this diagnosis doesn't define you — it's just something you'll learn to live with. Be patient with yourself as you adjust.

Migraines are more than just a "headache." My worst episode lasted for over 6 months. It made it really difficult to focus, sleep, and do daily activities.

A lot of the preventative medications did not work and had really bad side effects — hand tremors, GI issues, loss of appetite. Their doctor did not explain any possible side effects when prescribing, and they felt it was because they were a younger patient. Sometimes they mistook medication side effects for symptoms and worried they were getting sicker. More time to explain diagnoses and treatment options would let patients make more informed decisions about their care.

Advocate for yourself when medications aren't working for you. Make sure you're eating and sleeping enough, since most of the time migraines don't go away on medication alone — lifestyle changes like better sleep hygiene and diet may help. Since there are so many different triggers, it can be upsetting that there's no "one cure." Take it day by day and give yourself grace. Listen to your body and adjust as needed.

People don't know anything about it, including providers.

More centers of excellence, or willingness to refer to one.

Go to a center of excellence.

People often thought he was lazy and made fun of how he walked.

Provide therapy before surgery.

Immediately rest and try therapy before surgery.

One of the biggest misconceptions is that because she looks healthy, she must feel healthy. Sleep apnea is often thought of as a condition that only affects older or overweight people, but she was diagnosed as a young, healthy-weight adult — and untreated fatigue affects your ability to think clearly and function throughout the day. Endometriosis is often dismissed as "just bad period cramps," when in reality it's a chronic inflammatory disease that can cause debilitating pain and require surgery. Celiac disease is frequently misunderstood as a dietary preference rather than an autoimmune disease. The hardest part about all of these conditions is that they're largely invisible — just because someone doesn't look sick doesn't mean they aren't dealing with pain, fatigue, or the constant effort of managing a chronic illness.

She'd like to see providers place greater value on listening to patients, especially when they repeatedly raise concerns that don't fit the "typical" picture. Before her diagnosis, she brought up her symptoms numerous times, but they were often dismissed as her being dramatic, anxious, or having a low pain tolerance — symptoms that deserved to be investigated sooner. Earlier recognition, better education about conditions like endometriosis, sleep apnea in young adults, and celiac disease, and a greater understanding of invisible illnesses could prevent years of unnecessary suffering. No one should have to fight to be believed before they can receive the care they need.

It's okay to feel overwhelmed at first. A chronic illness changes your daily life, and it takes time to adjust — give yourself grace while you learn what your body needs. Don't be afraid to advocate for yourself, ask questions, or seek a second opinion if something doesn't feel right. Managing these conditions can be frustrating, but a diagnosis is also the beginning of finally understanding what's happening to your body.

People often think EDS in general is only bendy joints, but there are actually 13 different types, and not all of them cause hypermobility. hEDS is the most common type with no known gene, but the other 12 types are rare and ultra-rare and have associated collagen mutations. hEDS is a systemic condition — so much more than being "flexible."

The average age of diagnosis for hEDS is around 30 years, despite it being a genetic condition — because symptoms are so variable, and because there's no associated gene, diagnosis is made from a very specific set of clinical criteria. The system doesn't fail hEDS patients as badly as it fails those with rare EDS types: since hEDS accounts for 90% of all EDS cases globally, many providers assume their rare-type patients have hEDS too, which is dangerous. Each type requires its own treatment considerations, and some, like vascular EDS, cause extreme, life-threatening complications not seen in her type.

Get official genetic testing to rule out the other 12 types — that's the part a lot of doctors don't bother to do, but it matters, because hEDS isn't the only type of EDS. Otherwise, it's going to be okay. For many, an hEDS diagnosis explains so much, and it can feel very validating to finally have a name for what you're experiencing. Do your physical therapy and stay active to preserve your joint health. But also don't be afraid to use mobility aids if you need them — you can still live life to the fullest.

That everyone who's hypermobile is flexible — we're not always flexible, everything just bends wrong in our bodies. That chronic pain is made up in your head; I wish I could stop thinking about it and that would make it go away.

They wish physicians were more receptive to trying alternative practices or ordering further testing when persistent issues are occurring — they wish they could find better answers.

They wish more people reached out to others about their pain — they often don't, and regret it later. Rely on your support system.

That if you avoid trigger foods, you should be fine.

If a person knows they've experienced acid reflux for several months in a row, doctors should automatically start testing and giving medication.

Bug doctors until you get a clear answer and solution.

ADHD — many people try hard to hide or force it out of their lives, which takes tremendous effort; he believes it comes with burnout and anxiety at a much higher level than average. OCD — compulsions aren't done for pleasure or satisfaction; they're an unavoidable, unwanted thought that will bother you, often completely distracting you, until you satisfy it. Tic Disorder — tics are often assumed to mean yelling or random sounds, but most people with tic disorder experience motor tics involving muscle movement; his have been fully motor, and often keep him from falling asleep.

Celiac Disease — often mischaracterized as a "gluten allergy," when it's actually autoimmune and far more sensitive: even microscopic gluten can seriously affect someone with celiac. It's lifelong and causes long-term organ damage, yet many people with celiac still don't follow a proper diet to prevent those consequences.

ADHD has fairly good support in his opinion, but testing and assessment costs are severely high and that financial burden should be reduced. For OCD, the system relies primarily on medication; increased access to behavioral therapies like Exposure and Response Prevention would help many people. For Tic Disorder, teaching providers to screen for ADHD and OCD alongside tic symptoms would catch conditions that often go undiagnosed together.

Celiac Disease needs major reform — it's one of the most underdiagnosed conditions in the U.S., with roughly 1 in 141 Americans affected and around 83% of cases undiagnosed, largely because most healthcare workers are improperly educated about it. Celiac has been shown to cause conditions like amplified musculoskeletal pain syndrome, osteoporosis, and cancer; providers often treat those downstream conditions without ever recognizing celiac as the cause. Deeper evaluation and better medical education are needed.

ADHD — find a medication that works for you, build methods to stay focused when you need to, and don't be afraid to ask for help. OCD — find people who support and understand your condition; if you want to improve, look for a therapist who specializes in ERP, and don't feel ashamed of your impulses. Tic Disorder — manage your stress to avoid worsening tics, get plenty of sleep, and look into Comprehensive Behavioral Intervention for Tics if you need it; never feel ashamed of your tics.

Celiac Disease — mental health comes first; it can be overwhelming to be diagnosed with something this complex, so find help and support where you need it. Follow a strict, proper diet always — people around you, even other people with celiac, won't always take it seriously, but don't give in to that pressure. Look for gluten-free alternatives (there's almost always one that's just as good, if not better), and check labels every time, since GF products can lose that label with no warning. It will take work, but this is something you'll have forever, so make it a positive part of your life.

With scoliosis, people think you have to look uneven or irregular, when in reality even severe cases can be unnoticeable. With endometriosis, people believe it immediately means you're infertile, or that you're unable to have sex.

More frequent checkups for scoliosis patients to make sure the condition doesn't get worse, and more resources and research for endometriosis patients — especially young girls who may have the condition.

Scoliosis: don't let others make you feel bad about your condition — all bodies are beautiful. Endometriosis: keep fighting for treatment, and stay strong. There will always be good days and bad days.

Doctors often mistake lupus symptoms for other diseases, and can be very invalidating when she's trying to describe what she's experiencing. People often think her symptoms are constant — that's not the case. People also tend to think she's weak because of her diagnosis. That isn't the case either.

She'd want specialists and doctors to carry a certain level of empathy — she believes many lack this. She'd make it easier to access information on chronic conditions, including how to find specialists. For lupus specifically, she'd want a specific test that could determine whether a person has it or not.

Take your time to process your diagnosis — learning you have a chronic disease can be very difficult. Be brave and speak up for yourself, easier said than done as that is. Find a good rheumatologist who will listen to you. And know that the people who are good for you will stick around and help you through the tough times.

Dozens of things. That flashing lights cause seizures — only around 5% of people with seizure disorders are photosensitive. That it's a lifelong disability — roughly two-thirds of people become seizure-free on medication. That seizures all look the same — some can be as small and subtle as tics, similar to Tourette's syndrome.

Please don't hold someone down or put something in their mouth during a convulsion — people don't realize that during convulsions, a person also bites and flexes their tongue, and will shred their mouth and bleed a lot. Swallowing that blood can cause vomiting, and the most common cause of death from seizure is seizing while on your back and then choking. The best thing to do is put them in the recovery position, on their side.

One thing that's under-discussed rather than misunderstood: SUDEP (sudden unexpected death in epilepsy). The risk is low but real, concentrated in people with frequent uncontrolled convulsive seizures and nighttime seizures.

They're not entirely sure — they're very grateful for all their doctors. What they'd change is less about anything related to seizures specifically and more about things related to American health insurance.

Log every seizure you have — you might start to notice patterns, like having them around a certain time of day, or after not sleeping more than nine hours.

They were always told that having GSD wouldn't impact them beyond needing g-tube bolus feeds and cornstarch doses — which ended up being so wrong. Their body was constantly in survival mode. Similarly, transplantation isn't a cure, just a new way to manage the condition, despite the enzyme function in their liver being restored.

They wish the healthcare system knew to treat the whole person instead of just a set of symptoms. We're more than our conditions, and we deserve holistic, all-encompassing, person-first care.

It's allowed to be hard. You're allowed to not be okay with it. You actually don't have to be strong, or have it all together, or find the silver lining.

People see what she's able to do, but not what it takes out of her to do it — the morning stiffness, the exhaustion, the brain fog, the appointments and medications, the days her body simply won't cooperate. People sometimes assume that because she was fine yesterday, she should be fine today — but chronic illness doesn't follow a schedule. She doesn't need anyone to feel sorry for her; she just wishes more people understood that looking okay and feeling okay are two different things. Her activity may change, but her identity doesn't.

She's worked in healthcare since she was 19, and is now pivoting into social work — being on both sides, as a caregiver and as someone navigating the system for her own health, has completely changed her perspective. If she could change one thing, she'd want healthcare to become more human again: patients are more than a diagnosis, a lab result, or a name on a schedule. Sometimes people just want someone to sit down, listen, and believe them when they say something isn't right. She's learned firsthand how exhausting it is to advocate for yourself when you already don't feel well — you shouldn't have to keep proving you're hurting just because it isn't visible. Moving into social work, she wants to carry everything healthcare has taught her, the good and the frustrating, and become someone who listens, connects people to resources, and reminds them their voice matters — because sometimes caring for someone starts before any treatment does. It starts with listening.

Advocate for yourself, and trust God through the process. Ask the questions, write your symptoms down, keep up with your labs and appointments — if something doesn't feel right, speak up, and keep asking until you understand. This is your body, and your voice matters. But give yourself grace, too — you don't have to have it all figured out overnight, and there will be days you're frustrated, scared, or simply tired of dealing with it all. Keep trusting God through those days as well; faith doesn't mean the hard days disappear, sometimes it's just saying you don't understand it, but you know you're not alone. Your diagnosis may change how you do some things — it doesn't take away your purpose.

Just because they may look okay on the outside doesn't mean they're feeling good on the inside. With chronic illness, people often get disregarded because you can't always see how the person is being affected.

It might sound dramatic, but they wish there could be an overhaul of the whole system. Western medicine has the areas where it works well, and so does holistic, root-cause medicine — they wish the two could work together, rather than operating the way they tend to these days.

Be patient with yourself. It's going to feel like the world is crashing in on you, while at the same time giving you a bit of hope — because you've finally found out what's been causing your health issues. It's a lot to handle, both physically and emotionally, so give yourself grace and take your time. The condition isn't going anywhere any time soon, so you have time to collect yourself. In their experience, it's better to gather credible, science-backed information first, before diving in and spending money on treatment or doctors that won't get you feeling better.