My Conditions in Human Terms

Table of Contents

This page serves as a reference for my family, friends, and colleagues. While I've documented my accessibility notes elsewhere, this list explains the mechanical and physical "why" behind my daily experience, avoiding technical jargon where possible.

Allergies and Postnasal Drip

Most people think of allergies as just sneezing or itchy eyes, but for me, they're a physical barrier. My body produces a constant supply of extra mucus that doesn't drain right. This mucus pools in my stomach, which makes my gastroparesis symptoms and nausea much worse. It also clogs my airway, which is already small, forcing me to breathe through both my nose and mouth just to get enough air. When I'm sleeping, this makes my sleep apnea even harder to manage. If I don't use a heated tube with my breathing machine, my throat gets so dry and irritated that I can't breathe well the next day.

I also have to keep a bucket near me at all times because I often need to spit out mucus, which can be a lot and can come up suddenly. Blowing my nose often doesn't work well because the mucus is thick, and my nasal passages are narrow, so I tend to snort it back into my throat and then spit it out instead. This constant battle with mucus is exhausting and adds another layer of complexity to managing my health, as it affects multiple systems and can exacerbate many of my other conditions. On days when the mucus is thicker or more abundant, it's easier to choke or have a coughing fit, which can be both painful and dangerous, especially if it disrupts my breathing or sleep. The constant presence of mucus also means that I have to be very careful about my hydration and the products I use on my skin and in my nose, as certain ingredients can make the symptoms worse or trigger flare-ups. Overall, the allergies and postnasal drip are a significant part of my daily experience and require constant management to prevent them from exacerbating my other health issues.

The Condition List

Septo-Optic Dysplasia (SOD)

This is the "root" condition I was born with. It means certain parts of my brain and the systems that regulate my hormones didn't develop fully. It's the foundation for many of my other health challenges.

Total Blindness

I have no light perception or visual input, so I navigate the world using touch, sound, and structured text data. I also have prosthetic eyes that are purely cosmetic and don't provide any visual function.

Idiopathic Intracranial Hypertension (IIH)

This is high fluid pressure inside my skull. It feels like a balloon is being over-inflated behind my eyes and brain, creating constant pressure and severe pain. It also causes a constant "whooshing" sound in my ears that never completely goes away, known as pulsatile tinnitus. This worsens with any movement, strain, or change in position. On some days, possibly due to stress or hormonal fluctuations, the pain can become so intense that I'm completely incapacitated. I had a stent placed in my brain to help drain the excess fluid, but it hasn't fully resolved the issue.

Empty Sella Syndrome

Because of the long-term pressure from IIH, the structure in my brain that holds the pituitary gland has been flattened. This complicates how my body responds to stress and manages its "fuel." This also causes hormonal imbalances that contribute to fatigue and weight gain.

Occipital Neuralgia

This causes pain in my neck and the back of my head, and sometimes even facial pain. It feels like a constant, deep ache that can flare up into sharp, stabbing sensations with certain movements or pressure. Because of the pain, I have to be very careful with how I move my head and neck, which can make simple tasks like looking up or turning my head difficult and exhausting. I also can't sit with my neck unsupported for long periods, as it can trigger severe pain.

Migraines

Beyond just a headache, these are episodes of pulsing pain and extreme sensitivity to "sensory noise" like sound or touch. It can be difficult to tell a migraine apart from the constant pain of IIH or occipital neuralgia, but my migraines often come with nausea and sensitivity to sound.

Pain and Skin Management

Fibromyalgia

My nervous system is stuck on a high-pain setting. It creates a heavy, "flu-like" exhaustion and widespread aching that never fully subsides. It also causes what I call nerve pain, which is a sharp, shooting sensation that can occur anywhere in my body without warning. This nerve pain can be triggered by even the slightest touch or movement, making it difficult to find comfortable positions or engage in physical activities. The constant pain and fatigue from fibromyalgia also contribute to my overall energy depletion, making it hard to maintain a regular routine or participate in social activities.

Sometimes, I have a feeling like bugs crawling under my skin, which is a common symptom of fibromyalgia known as "formication." This sensation can be extremely uncomfortable and distracting, further impacting my ability to rest or focus on tasks. Being blind, I don't always know if the sensation is real or just a nerve issue, which adds another layer of confusion and discomfort.

Rheumatoid Arthritis

An autoimmune condition where my body's defense system attacks my joints. It causes deep, stiff aching and physical damage over time. It also makes my hands and fingers feel swollen and weak, which can make it difficult to grip objects or perform fine motor tasks. The pain from rheumatoid arthritis can also flare up unpredictably, making it hard to plan activities or maintain a consistent level of function. Additionally, the inflammation can cause fatigue and a general feeling of being unwell, which adds to the overall burden of managing my health. This is worst in my hands, but it can also affect my knees and other joints, making walking and standing for long periods difficult.

Hidradenitis Suppurativa

A chronic skin condition that causes painful, recurring lumps and tunnels under the skin, usually in areas where skin rubs together. I get these in my armpits, on the back of my neck, under my breasts, and in my groin. They can become infected and require drainage, which is a painful process that can take weeks to heal. The constant discomfort and risk of infection from these lesions make it difficult to find comfortable clothing or positions, and they can also cause significant emotional distress due to their visibility and chronic nature. I also have to be careful about which deodorants or skincare products I use, as certain ingredients can trigger flare-ups. The pain from these lesions can be severe enough to interfere with sleep and daily activities, and the healing process can be slow and unpredictable, which adds to the overall challenge of managing this condition.

Seborrheic Dermatitis

A recurring skin irritation that causes painful, itchy patches on my scalp and face and behind my ears. If scratched, these patches can bleed and become infected, which adds another layer of discomfort and health management to my daily life. The constant itching and irritation can make it difficult to focus on tasks or get restful sleep, which can further exacerbate my fatigue and overall health issues. I have to be very careful about the products I use on my skin and scalp, as certain ingredients can trigger flare-ups or make the symptoms worse, which adds another layer of complexity to managing this condition.

Digestion and Swallowing Mechanics

No Automatic Swallow and Dysphagia

The physical reflex to move food or liquid down my throat doesn't always work. I have to manually "trigger" the swallow to prevent choking. If I don't, I drool or have food come back up, which can be embarrassing and uncomfortable. This also means I have to eat very slowly and carefully, which can be exhausting and time-consuming. I also have to be mindful of the types of food I eat, as certain textures can be more difficult to swallow and increase the risk of choking.

Additionally, I sometimes experience a sensation of food getting "stuck" in my throat, which can be both painful and frightening, especially if it triggers a coughing fit or makes it difficult to breathe. I also regularly choke on saliva, which leaves me feeling unwell for the rest of the day. Pills are especially difficult, and I often have to take them with a lot of water and in a specific position to ensure they go down safely. I once had a barium swallow test, which involved swallowing a chalky liquid while being X-rayed to see how it moved through my throat. The results showed that my swallowing reflex is very weak and uncoordinated. The doctor had to tell me to keep swallowing the liquid several times because it kept coming back up. I didn't even realize it was happening and remember being confused about why the doctor was asking me to keep swallowing when I felt like I had already swallowed it. This test really highlighted how much of my swallowing process is manual and how easily it can go wrong, which has been a constant challenge in my daily life.

Esophageal Dysmotility

The muscles in my food pipe don't move in the correct rhythm, making it physically difficult and tiring to move food toward my stomach. I often have to sit upright for a long time after eating to help gravity do the work and use liquid to help move food down. This also means I have to be very careful about what I eat, as certain foods can get stuck or cause more discomfort. The sensation of food not moving properly can be very distressing and can lead to anxiety around eating, which adds another layer of difficulty to managing my nutrition and overall health. If I lie down too soon after eating, I can feel the food or liquid pool and come back up, which can be both uncomfortable and embarrassing. I also have to be mindful of portion sizes, as eating too much at once can exacerbate the symptoms and make it even harder to manage the dysmotility.

Large Tongue

A physical barrier that makes the mechanical acts of speaking and swallowing more taxing on my energy. My tongue is large enough that during a sleep study, the doctor tried to see my airway and couldn't, even with a tongue depressor. This contributes to my sleep apnea and makes it more difficult to manage my breathing and swallowing, especially when I'm in pain or fatigued. It also means I can bite my tongue more easily, which can lead to painful sores and further complications with eating and speaking. The size of my tongue also makes it more difficult to keep my mouth closed while sleeping, which can exacerbate my sleep apnea and lead to more disrupted sleep. Because of the size of my tongue, along with postnasal drip, I breathe through both my nose and mouth. If I try to breathe only through my nose, I don't feel like I'm getting enough air and can get lightheaded.

Gastroparesis

My stomach is partially paralyzed. It doesn't empty into the small intestine correctly, which means food sits still for a long time, causing intense nausea and pain. This is severe enough that I don't get enough nutrients from food, so I'm now on oral medical food shakes as my primary source of nutrition. I have to be very careful about what I eat, as certain foods can exacerbate the symptoms and lead to more discomfort. The sensation of food sitting in my stomach can be very distressing and can lead to anxiety around eating, which adds another layer of difficulty to managing my nutrition and overall health. I also have to eat very small meals throughout the day, as larger meals can make the symptoms worse and increase the risk of vomiting. The nausea from gastroparesis can be so severe that it sometimes leads to vomiting, which can further deplete my energy and nutrients, making it even harder to manage my overall health. Due to my allergies, postnasal drip, and GERD, my body produces a lot of mucus, which can pool in my stomach and make the symptoms of gastroparesis worse.

GERD and IBS (Mixed Type)

Unpredictable digestive distress that can cause sudden pain or "system upsets" regardless of what I've eaten. Having IBS mixed type means I can experience both constipation and diarrhea, sometimes even alternating between the two in a short period of time. My GERD isn't the typical "heartburn" type. It's more of a reflux caused by the dysfunction of my esophagus and stomach, which can lead to a constant feeling of acid or food coming back up, even when I'm not eating. This can be very uncomfortable and can interfere with my ability to eat and sleep. The unpredictability of these symptoms can make it difficult to plan meals or social activities, as I never know when a flare-up might occur. It also leads to unusual hiccups. I don't just hiccup. I hiccup and then burp, and the hiccups are hard and painful, like a spasm in my diaphragm. These can last for hours and are very exhausting.

Respiratory and Sleep Systems

Manual Breathing

I breathe automatically, but when I'm focused on something or in a lot of pain, I might forget to breathe deeply or regularly. This can lead to lightheadedness and increased fatigue, so I have to consciously remind myself to take deep breaths, especially during stressful or painful moments. I also sometimes catch myself breathing too heavily and have to consciously slow down to avoid hyperventilation, which can cause dizziness and exacerbate my symptoms.

Sleep Apnea

My breathing stops repeatedly while I sleep. This means my body stays in "emergency mode" all night and never gets actual rest. Because of my combination of conditions, I can't use a CPAP machine, which is the standard treatment for sleep apnea. Because of breathing through both my nose and mouth, I have to use a full-face mask, but the straps irritate my skin and scalp. Since I don't swallow automatically, drool pools on my face all night, which is both uncomfortable and makes the mask a mess.

My allergies and postnasal drip also mean that I have to use a heated tube, or else my throat and nose get dry and irritated, and it's harder to breathe the next day. Medicaid also won't cover the heated tube, saying it's not medically necessary, so I have to pay for it out of pocket. Finally, the mask and straps are uncomfortable enough with my sensory issues that I often find myself taking it off in the middle of the night, which defeats the purpose and leaves me feeling exhausted and unrested in the morning. The combination of these factors makes it very difficult to manage my sleep apnea effectively, which has a significant impact on my overall health and quality of life.

Non-24-hour Sleep-Wake Disorder

My internal clock doesn't follow the 24-hour sun cycle. My "day" shifts forward constantly, leaving me in a state of permanent jet lag. This, combined with chronic fatigue from all my other conditions, means I have no sleep schedule and often feel like I'm living in a fog. The constant shifting of my sleep-wake cycle can make it difficult to maintain a regular routine or participate in social activities, as I never know when I'll be awake or asleep. It also contributes to my overall fatigue and can exacerbate the symptoms of my other conditions, making it even harder to manage my health effectively. I've tried many times to get on a regular sleep schedule, but it never works. It might seem to work for a few days, but then I have a day of bad fatigue or pain and spend the day sleeping, which shifts my schedule forward and throws everything off again. This cycle has been ongoing for years, and it's something I have to constantly manage and adapt to.

Information Processing and Mental Health

Autism and Neurodivergence

Right now, we don't know if I'm autistic or something else, but I have a lot of the same traits. I have sensory processing issues, social communication differences, and a need for routine and structure. This also means I have a different way of experiencing and processing pain and fatigue, which can make it harder for others to understand what I'm going through. My sensory processing issues can make certain textures or sounds overwhelming, which adds another layer of difficulty to managing my daily life and health. The social communication differences can make it harder for me to express my needs and experiences to others, which can lead to misunderstandings and feelings of isolation. The need for routine and structure can make it difficult to adapt to changes in my schedule or environment, which can be particularly challenging given the unpredictability of my health conditions. Additionally, being neurodivergent means that I may have a different way of processing and coping with stress, which can impact how I manage my health and interact with others. It's important for those around me to understand that my neurodivergence is an integral part of who I am and how I experience the world, and that it can influence how I manage my health and communicate my needs.

I also find speaking difficult, and it can be hard to find the right words or express myself clearly. This worsens when I'm in pain, fatigued, or anxious, which can make it even harder to communicate with others and advocate for myself. I tend to prefer to write rather than speak for this reason, but even writing is hard for me. One trap of being highly verbal is that everyone seems to believe that words are easy for me, but they aren't. I have to work hard to find the right words and put them together in a way that makes sense, which can be exhausting and time-consuming, and speaking requires coordinating my mouth, breathing, thoughts, swallowing, and tongue, which is a lot. This is especially true when I'm trying to explain my health conditions or advocate for myself, as I want to make sure I'm being clear and accurate, but it can be difficult to find the right language to do so. If someone rushes me or interrupts me while I'm trying to explain something, it can throw off my train of thought and make it even harder for me to communicate effectively. I also have a hard time with small talk and social niceties, which can make social interactions more draining and less enjoyable for me.

I also stim, which means I have certain repetitive movements or behaviors that help me regulate my sensory input and manage my emotions. This can include things like rocking, fidgeting, vocalizations, chewing, or just needing to always be doing something with my hands, and it can be a crucial coping mechanism for me, especially when I'm in pain or feeling overwhelmed. However, stimming can also be misunderstood by others, and I have to be mindful of how it might be perceived in social situations, which can add another layer of stress and self-consciousness to my interactions with others. One of my stims, skin picking, can be particularly problematic, as it can lead to painful sores and infections, especially when I'm in a lot of pain or feeling anxious. I have to be very careful about managing this stim and finding alternative ways to cope with my emotions and sensory input, which can be challenging but is necessary for my overall health and well-being.

Topographical Agnosia

I have no "mental map" and can't visualize the layout of a room or how two places connect. I move through space using tactile landmarks and coordinates rather than mental pictures. This means I have to be very careful about how I navigate new environments, and I often have to ask for help or use assistive technology to get around. It also means that I can easily get lost or disoriented, especially in unfamiliar places, which can be both frustrating and anxiety-inducing. I have to rely heavily on my other senses, such as touch and sound, to create a mental map of my surroundings, but this can be difficult and time-consuming, especially in complex environments. Additionally, I have to be very mindful of my surroundings and use consistent landmarks to help me navigate, which can be challenging in crowded or changing environments.

This also means that I have to be very careful about how I organize my living and working spaces, as I rely on tactile cues to find things and move around safely. If the environment is too noisy or crowded, it can be overwhelming and make it even harder for me to navigate and find my way around, which can lead to feelings of anxiety and disorientation. I still get lost in my own home sometimes, especially if I'm in a different room or if something has been moved around. I have to rely on my memory of the layout and tactile cues to find my way, but it can be easy to get turned around or disoriented, especially if I'm in pain or fatigued. This applies to digital spaces as well. I have a hard time navigating websites or apps that aren't designed with clear structure and organization, as I can't create a mental map of the layout. I have to rely on consistent navigation and clear labels to find what I need, and even then, it can be difficult and time-consuming to navigate complex digital environments. A phone is much harder to navigate than a computer because of the smaller screen and more limited tactile cues, which can make it more difficult for me to use effectively.

Severe Executive Dysfunction

The "starter motor" for my brain is often broken. Even when I have the desire and a plan to do a task, my brain can't always send the signal to my body to begin. This is severe enough that tools people often recommend for executive dysfunction, like to-do lists or reminders, don't work for me. I can have a clear plan and the motivation to do something, but my brain just won't send the signal to start, which can be incredibly frustrating and lead to feelings of guilt or shame. This also means that I have to be very careful about how I structure my day and manage my energy, as I can't rely on willpower or motivation to get things done.

I have to use a lot of external supports and accommodations to help me manage my executive dysfunction, but even with those, it can still be a struggle to get started on tasks, especially when I'm in pain or fatigued. This can lead to a lot of procrastination and difficulty maintaining a regular routine, which can further exacerbate my health issues and make it even harder to manage my overall well-being. Additionally, the executive dysfunction can make it difficult to plan and organize my thoughts and actions, which can lead to a lot of mental clutter and overwhelm. I often have a hard time breaking down tasks into smaller steps or figuring out where to start, which can make even simple tasks feel insurmountable. This can lead to a lot of avoidance and difficulty following through on commitments, which can impact my relationships and overall quality of life. Even when I do manage to get started on a task, I can have a hard time sustaining the effort and focus needed to complete it, which can lead to a lot of unfinished projects and a sense of frustration and disappointment in myself.

Severe Time-Blindness

I don't "feel" the passage of time. Five minutes and five hours feel identical to me, making external timers a mechanical necessity for my survival. Without them, I can easily lose track of time and end up in dangerous situations, such as forgetting to eat or take medication. This also means that I have to be very careful about how I structure my day and manage my time, as I can't rely on my internal sense of time to keep me on track. I have to use a lot of external supports and accommodations to help me manage my time-blindness, such as alarms, timers, and reminders, but even with those, it can still be a struggle to stay on schedule, especially when I'm in pain or fatigued.

This can lead to a lot of missed appointments, forgotten tasks, and difficulty maintaining a regular routine, which can further exacerbate my health issues and make it even harder to manage my overall well-being. Additionally, the time-blindness can make it difficult to plan and organize my day, as I can't accurately estimate how long tasks will take or how much time I have available, which can lead to a lot of mental clutter and overwhelm. I often have a hard time breaking down tasks into smaller steps or figuring out how to allocate my time effectively, which can make even simple tasks feel insurmountable. This can lead to a lot of avoidance and difficulty following through on commitments, which can impact my relationships and overall quality of life. Even when I do manage to stay on schedule, I can have a hard time sustaining the effort and focus needed to complete tasks within a reasonable timeframe, which can lead to a lot of unfinished projects and a sense of frustration and disappointment in myself. This is exacerbated by my non-24 and chronic fatigue, which can make it even harder to manage my time effectively and stay on track with my schedule.

Probable CPTSD

My nervous system often stays in "survival mode" due to experiences with medical and institutional harm, making it hard to feel physically safe. Trauma for me shows up as freezing, fawning, or anxiety, and it can be triggered by needing to work with systems meant to support disabled people, such as healthcare providers, social workers, or even certain accommodations, people around me fighting, trying to do independent living tasks where I was previously pushed, or even loud noises. This can make it very difficult for me to access the care and support I need, as I may avoid seeking help or advocating for myself due to fear of retraumatization. It also means that I have to be very careful about how I interact with these systems and the people within them, as certain triggers can lead to a shutdown or panic response that makes it impossible for me to communicate my needs effectively. Additionally, the CPTSD can impact my overall mental health and well-being, leading to feelings of anxiety, depression, and isolation, which can further exacerbate my physical health issues and make it even harder to manage my overall health.

Major Depressive Disorder and Generalized Anxiety Disorder

The persistent mental fatigue and "background noise" of worry that comes from the high cognitive load of manually managing all these systems. This also means that I have to be very careful about how I manage my mental health, as the symptoms of depression and anxiety can make it even harder to manage my physical health and advocate for myself effectively. The depression can lead to feelings of hopelessness and a lack of motivation, which can make it difficult to engage in self-care and seek out support, while the anxiety can lead to constant worry and fear about my health and future, which can be overwhelming and exhausting. Additionally, the combination of depression and anxiety can lead to a lot of mental clutter and overwhelm, making it difficult to focus on tasks or make decisions, which can further exacerbate my health issues and impact my overall quality of life. It's a constant balancing act to manage both my physical and mental health, and I have to be very mindful of how they interact and impact each other in order to maintain some level of stability and well-being.

Metabolic and Physical Management

Obesity

A metabolic challenge tied to the hormonal issues from SOD and the difficulty of physical movement while in high pain. This also contributes to my sleep apnea and makes it more difficult to manage my overall health. The excess weight can put additional strain on my joints, which can exacerbate the pain from rheumatoid arthritis and make it even harder to move around. It also increases the risk of other health complications, such as diabetes and heart disease, which adds another layer of concern to managing my health. Additionally, the obesity can lead to social stigma and discrimination, which can impact my mental health and overall well-being.

I've tried many diets and weight management strategies, but the underlying hormonal and metabolic issues make it very difficult to lose weight and keep it off, which can be frustrating and disheartening. Even if I lose a little, it usually comes back, and sometimes I gain more, which can feel like a constant uphill battle. You can also be overweight and malnourished at the same time, which is something I experience due to my gastroparesis and difficulty absorbing nutrients from food.

Urinary Incontinence

A loss of bladder control that requires constant physical management and planning for safety. This means I have to be very careful about how I manage my bathroom needs, as I can't always make it to the bathroom in time or may have accidents, which can be both embarrassing and uncomfortable. It also means that I have to plan my activities and outings around my bathroom needs, which can limit my ability to participate in social activities or go out for extended periods of time.

Additionally, the incontinence can lead to skin irritation and infections if not managed properly, which adds another layer of health management to my daily life. I have to use a combination of protective products and frequent changes to manage this condition effectively, which can be both time-consuming and costly. I also get my supplies through Medicaid, which means I have limited control over the brands and types of products I can use, and sometimes the products they provide aren't the best fit for my needs, which can lead to discomfort and further complications. The incontinence can also lead to feelings of shame and embarrassment, which can impact my mental health and overall well-being, making it even harder to manage my health effectively.

Why This Page Exists

Managing these conditions is a full-time job that happens in the background of everything else I do. If I'm resting, quiet, or slow to start a task, it's because one or more of these systems is currently requiring my manual attention. This page is meant to help people understand the "why" behind my daily experience, so they can better empathize with what I'm going through and support me in ways that are meaningful and helpful. It's also a way for me to organize my thoughts and experiences around my health, and to have a reference that I can share with others when needed. I hope that by sharing this information, I can help others understand the complexities of living with multiple chronic conditions and the importance of empathy and support in managing health challenges.