Why Chronically Ill People Don’t Always Recognize a Medical Crisis

When the pain first started, I thought, “It’s probably just another flare.”
I waited. I always wait. By the time I realized something was really wrong, I was already doubled over in pain, vomiting bile, and unable to stand upright.

That wasn’t self-neglect. It was conditioning; years of being told it can’t possibly hurt that much or comments that questioned if I might be exaggerating my symptoms.  Chronic illness and the response we typically get from many medical providers teach us to second-guess our own pain.

The Pain Scale Paradox

Even the standard 1–10 pain scale trains us to minimize what we feel. With chronic illness, I’m never really below a five. But if I tell a nurse my pain is a ten, I’m often reminded that “ten is the worst pain imaginable” or “the worst pain you’ve ever felt.”

Well, I’ve had pain that would knock an elephant off its feet or make a quarterback sob in agony, but is this the worst pain I’ve ever felt? Not half! That’s the trap: when your baseline is already high, the scale stops meaning anything. What’s “severe” for most people has become our everyday normal.  For many with chronic illnesses in a medical crisis, on a scale of 1 to 10, we are a 47!

When ‘Wait and See’ Becomes Dangerous

Over time, we start doing to ourselves what others have done to us: minimizing, rationalizing, waiting. With complex medical conditions, where multiple systems overlap or contradict each other, doctors often can’t pinpoint a single cause. The “wait and see” approach becomes the default. “Let’s try one thing and see how you react,” followed by another and another, until months, or even years, pass.

But chronic illness doesn’t work that way. Symptoms may be managed, but they rarely disappear. Some treatments help; others backfire. A few work for a while, then stop. Sometimes, treating one problem triggers another.

When that cycle repeats, both patient and doctor start doubting what they see. Physicians get frustrated with what they can’t fix and patients learn to keep quiet about what still hurts.

How the System Teaches Us to Doubt Ourselves

Many doctors, especially those unfamiliar with chronic pain conditions, grow impatient when the expected “miraculous recovery” doesn’t happen. Some take that frustration out on patients: labeling them “difficult,” limiting care, or implying they’re exaggerating.

We internalize that judgment. We stop calling, stop asking, stop trusting ourselves. We tell ourselves what we’ve heard and experienced so many times, “Maybe it’s not that bad.”  We delay going in until it’s an emergency, or until someone else steps in and demands we seek help.  Why do we wait?  Because if we went to the hospital every time we were in extreme pain, we’d risk being seen as attention-seeking, or worse yet, as “drug-seeking.” Neither is true, but the fear of being dismissed keeps us silent.

Enduring Isn’t the Same as Being Numb

People with chronic illness are not desensitized to pain. We are simply practiced at functioning through it. It’s a survival mechanism, not a lack of sensation.

If an able-bodied person felt what we feel on an average day, they’d call an ambulance. We just keep going because we can’t spend our entire life rolling around on the floor, screaming and crying!  Our mantra often becomes “what cannot be cured must be endured.”  That endurance, though, blurs the line between “normal” and “crisis,” sometimes to the point that things become life-threatening or life-limiting before we realize what has happened.

The Aftermath of Self-Doubt

When things finally spiral, we look back in disbelief:“Why didn’t I call an ambulance? Why didn’t I go in sooner?” “Why didn’t I just that the hard stance and advocate for myself?”

But the real issue isn’t personal failure; it’s a healthcare culture that invalidates suffering until it’s life-threatening. That delay can mean intensive interventions, emergency surgeries, or critical care stays that could have been prevented.

A Call for Empathy and Change

If medical providers and indeed, our own friends and family, instead of labeling us complainers, oversensitive, or fixated, simply reassured us that we were right to seek help, it could change everything. Empathy is so powerful! 

Encourage us to believe ourselves. Remind us that knowing our bodies is a strength, not an obstacle.

Unfortunately, our system rewards speed and limits access to medical providers and treatments. Many specialists can only see patients every six to eight weeks, even during severe flares. That “wait and see” approach leaves people suffering for months, sometimes years, before real help arrives.  No one should have to live that long in pain.

Learning to Trust Ourselves Again

We’ve spent years downplaying our pain to make others comfortable. We’ve spent years being passed from one specialist to another, without resolution or even basic follow-up.

It’s easy enough to say, “You have to be your own advocate and demand help!” but it is harder to do when the system is stacked against you, and you risk having your medical care limited or even denied if you are seen as being too hyper-focused on your own illness or falsely accused of exaggerating your symptoms.  But despite all of that, it’s time we learn to trust our bodies again, before they have to scream to be heard. 

When you live with a chronic illness, cancer, or any life-changing medical condition, everyone suddenly believes they have the cure you and your entire medical team somehow overlooked. Experience and actual medical knowledge do not seem to matter. People will offer advice that ranges from overly simplistic to completely unrealistic, yet they are convinced it will solve everything.

It doesn’t matter if they have no medical background at all. It doesn’t matter if their idea is impractical, unscientific, or deeply bizarre. They are absolutely certain it will work, because their cousin’s neighbor’s dog walker once tried something similar and “felt better.”

When you’re faced with these awkward questions, statements, and magical cures, you can try responding gently and with patience. But often the person handing out unsolicited advice only becomes more insistent. This is why humor can become your best tool, especially when logic and politeness have left the building.

Most of my suggestions start with gentle or educational responses for those who genuinely mean well but simply don’t understand. But for the ones who are fully committed to their inaccurate, intrusive, or downright ridiculous assumptions?  You may need to pull out the sassier replies, or even the spicy ones.

So, let’s take a look at some of the seriously awkward things friends, family, coworkers, and complete strangers feel wildly comfortable saying, and the comebacks you can use when your last nerve has officially clocked out.

“I’ve known other people with your illness, and they don’t act this way!”

• “Medical conditions affect different people in different ways.”
• “Funny. I did not realize my disability needed your approval to be valid.”
• “Wow. Please send me the handbook titled How People With My Illness Are Supposed to Act. Mine must have gotten lost in the mail.”

“You’re too young to be this sick!”

• “Medical conditions can happen at any age.”
• “Sorry. My body didn’t check my birth certificate before falling apart.”
• “Trust me. I tried to schedule this for later in life, but my body declined the request.”

“It can’t be that bad!”

• “I assure you that I’m not making this up or exaggerating.  It is this bad.”
• “You’re welcome to borrow my symptoms for a day and get back to me.”
• “Great news. My body is officially cured because you said so.”
• “You’re right. I just do this for fun.”
• “Amazing. You assessed my entire medical reality in under ten seconds. Should I call you doctor now?”

“Well, you don’t have to make such a big deal about it!”

• “I’m not trying to make a big deal of it. It just affects me more than it may seem from the outside.”
• “I’m doing my best. Sometimes even small things feel big when you’re dealing with chronic illness.”
• “Oh, sorry. I forgot you were the expert on how much my life impacts me.”
• “My mistake. Next time I’ll run my suffering through your approval filter.”
• “Trust me. If I could make it a smaller deal, I would have done that years ago.”

“At least you’re not dead!”

• “True. But ‘alive’ and ‘living well’ are not the same thing.”
• “I am grateful to be alive. But that doesn’t erase everything I’m struggling with.”
• “I hear what you’re trying to say, but it minimizes what chronic illness actually feels like.”
• “Being alive isn’t the same as thriving. I’m working on the thriving part.”
• “Well, yes… but survival isn’t exactly my full list of goals.”
• “I’m glad to be alive. That doesn’t make this easy.”
• “Sometimes being alive is the hard part.”
• “Thanks… I’ll add ‘not dead’ to my gratitude journal right between ‘gravity exists’ and ‘the sky is still up there.’”
• “I know you mean that kindly, but that’s a pretty low bar for quality of life.”
• “Wow, you’re right — I am alive. Let me go bake a cake in celebration of this very low bar.”
• “Great, so we’ve established I’m not dead. Now let’s aim for ‘not miserable’ next.”
• “Well, yes, but if ‘not dead’ is the goalpost, I think we need to raise our standards a bit.”
• “True. But sometimes it feels like the warranty on my body has definitely expired.”
• “Well, thank you for that life-affirming insight. I’ll be sure to remember it next time I’m in agony.”    

“Drugs are bad. Drug companies are bad. You shouldn’t need to take medication! You should only use natural healing methods.”

• “Natural methods can definitely be helpful, but for my condition, I also need the medications my doctors prescribe to stay stable.”
• “I appreciate that you care, but my illness requires treatment that natural methods alone can’t manage.”
• “Wonderful. I will let my immune system know it is supposed to heal itself with positive vibes and herbal tea.”
• “Great plan. I will just go tell my chronic illness to stop being chronic.”

“You must have done something to cause this!”

• “I know it might seem that way, but many medical conditions happen without anyone causing them.”
• “I understand why people wonder that, but my doctors have been clear that this isn’t something I caused.”
• “I try not to blame myself. My condition developed on its own, like many chronic illnesses do.”
• “It’s natural to look for reasons, but in reality a lot of health issues aren’t caused by anything someone did or didn’t do.”
• “Yes. I caused it by existing. Wild, I know.”
• “Right. I woke up one day and thought, ‘You know what would be fun? A lifelong medical condition that makes me miserable!’”
• “If people only got sick when they ‘caused it,’ hospitals would be empty.”

“You don’t look disabled!”

• “That’s the tricky part. Not all disabilities show on the outside, but they still impact daily life.”
• “I understand why you’d think that. Invisible disabilities can be hard to recognize.”
• “I know it’s not obvious, but I manage symptoms that aren’t visible to others.”
• “Good thing disability is not a fashion trend.”
• “Amazing. I did not realize disabilities had a specific look. Is there a catalog I missed?”
• “Hold on. Let me go put on my official Disabled Uniform so you can feel more comfortable.”
• “Let me find my official ‘Disability Club Card’ in my wallet so you will be convinced.”
• “That is the thing about invisible disabilities. You can’t see them… but we still live with them.”
• “If looking disabled were required, half the population would be disqualified.”
• “Well, you don’t look like someone who says ridiculous things to strangers… but here we are.”
• “Shocking, right? Turns out appearances can be deceiving.”

“Autoimmune disorders aren’t real. The doctors made that up so they can get your money.”

• “I know it can sound confusing, but autoimmune conditions are very real. They’re well-documented in medical research and labs.”
• “I know people have different beliefs about medicine, but autoimmune disorders are confirmed through bloodwork, biopsies, and imaging, not just opinions.”
• “Fascinating. I did not realize medical science was supposed to check with you before discovering things.”
• “Amazing. My immune system attacking my organs must have missed the memo that it is not real.”
• “Wild. My labs, biopsies, and specialists all disagree, but sure, random stranger, tell me more about your conspiracy theory.”

“Oh, I understand. My grandma had arthritis, too!”

• “I appreciate you trying to relate. My condition is a bit different and affects more than just my joints.”
• “Arthritis can be really tough. My condition has some similarities, but it also involves other symptoms that make it more complex.”
• “I understand what you mean. My illness goes beyond typical arthritis, but I know your grandma must have struggled, too.”
• “What I have is different from traditional arthritis, but I know both can be painful.”
• “Ah, yes. The classic Grandma Comparison. Truly the gold standard of medical expertise.”
• “Your grandma had arthritis. I have a chronic autoimmune disease. That’s where the similarities end.’”
• “Fantastic. Did she battle systemic inflammation, nerve pain, organ involvement, and fatigue so bad she could not sit upright?  Unless she did, then we are not talking about the same thing.”
• “If your grandma’s arthritis was anything like this, she deserves a medal. And so do I.”

“I have some arthritis in my knees, but I don’t act like it’s the end of the world!”

• “That’s great that your symptoms are mild. Mine are more widespread and come with additional complications.”
• “I’m happy your arthritis isn’t too severe. My condition behaves differently and affects my daily life in bigger ways.”
• “I hear you. My situation is a bit more complex than typical arthritis, which is why it can feel overwhelming at times.”
• “Congrats on your knees. Unfortunately, my condition affects a little more than two joints on rainy days.”
• “That is great for you. My body, however, chose the deluxe autoimmune destruction package.”
• “If mild knee arthritis were my only issue, I would be doing cartwheels. Well… metaphorically.”
• “I am thrilled your pain is small enough to brag about. Some of us are fighting battles you cannot see.”

“There are people who have it so much worse than you!”

• “I know others struggle too, but that doesn’t make my challenges disappear.”
• “Suffering isn’t a competition. We all have our own battles.”
• “I can care about others and still acknowledge that this is hard for me personally.”
• “Other people suffering does not make my pain any less painful.
• “I did not realize pain was a competition. Do I get a trophy for participating?”
• “Their suffering is regrettable, but it does not cancel out mine.”

“You should be grateful it isn’t worse!”

• “I do try to stay grateful. It just doesn’t take away the challenges I’m dealing with.”
• “I understand what you mean. I can appreciate what I have and still struggle with what’s difficult.”
• “Gratitude helps, but it doesn’t erase my symptoms or make them easier to manage.”
• “I am grateful it’s not worse. I’m also honest about what I’m experiencing now.”
• “Gratitude does not magically cure illness but thank you for the spiritual advice you did not need to give.”
• “Being grateful it is not worse does not make living with this any easier.”
• “If gratitude could fix my body, trust me, I would be healed, sparkling, and doing backflips.”
• “Gratitude does not cancel pain.”

“You’d be just fine if you’d lose some weight and exercise more!”

• “Staying active is definitely helpful, but my condition is medical and needs more than exercise to manage it.”
• “I do what activity my body safely allows. Unfortunately, my illness isn’t something that improves just from exercise alone.”
• “A healthy lifestyle is good for everyone, but my condition is more complex than that. I follow the plan my doctor recommends.”
• “Weight and exercise aren’t the cause of my illness. It’s a diagnosed medical condition that needs real treatment.”
• “I move as much as I safely can, but my symptoms still need medical care. Lifestyle changes can help, but they don’t cure this.”
• “Amazing. My specialists must have missed that during the decade they spent in medical school. Good thing you solved it in one sentence.”
• “Thank you for the medical advice that ignores my actual medical condition.”
• “I exercise as much as my body allows. Sadly, it did not fix being chronically ill, but please keep pretending it would.”
• “My illness is complex. Your explanation is not.”
• “I appreciate the thought, but my condition cannot be fixed by weight loss or exercise. It is a medical issue, not a lifestyle choice.”
• “Movement and a healthy weight is good for everyone, but unfortunately it doesn’t cure autoimmune or chronic conditions. I follow my doctor’s guidance for what my body can handle.”
• “Actually, my illness is not caused by weight. It is a diagnosed medical condition that needs real treatment, not just lifestyle adjustments.”
• “I do exercise as much as my body safely allows. Unfortunately, my condition is not something that improves just from being more active. Activity can actually make it worse at times.”

“There is always something wrong with you… You always have something to complain about.”

• “I talk about it because I am living with it every day. I am not complaining. I am trying to cope and be honest about my reality.”
• “It may seem that way, but that is because my symptoms never really stop. I am doing my best to manage them.”
• “I know it can sound like a lot, but these issues are ongoing for me. I share them so people understand what I deal with, not because I like complaining.”
• “I am not trying to burden anyone. My health challenges are constant, and sometimes talking about them is part of how I cope.”
• “I know it seems like a lot. I wish it were not. This is just the reality of living with a chronic condition.”
• “Oh, absolutely. I wake up every morning excited to overwhelm you with a full report of my medical misery.”
• “Yes, it is my favorite hobby. Some people collect stamps. I collect diagnoses.”
• “You’re right. I do love spending all my energy narrating the thrilling adventures of a body that doesn’t function.”
• “Of course. I schedule new symptoms just so I have something exciting to share with you.”
• “Absolutely. My chronic illness exists purely for your entertainment.”
• “Yes, I enjoy describing my medical issues almost as much as I enjoy having them.”

“You just need to have more faith and God will heal you!”

• “I appreciate that your faith is important to you. Mine helps me too, but my condition still requires medical treatment.”
• “Chronic illness is not a measure of anyone’s faith. I am doing my best with both faith and medicine.”
• “Having faith is important to me, but it does not make my medical condition disappear. I trust my doctors and my beliefs to work together.”
• “My illness is not caused by a lack of faith.”

“Why do you need a handicapped parking place? Those are for people who really need them.”

• “I use it because my doctor determined that I qualify for it and need it to be as active as I am able. I would not use the space if I did not genuinely need it.”
• “The state only issues these placards to people who truly qualify, and I am one of them.”
• “Handicapped parking is for people who need it. My doctor and the state agreed that I do. That is why I use it.”
• “I qualify for it medically. Not all disabilities are visible, you know..”
• “I need it for medical reasons that are not always obvious from the outside.”
• “I don’t discuss my private medical conditions with people I do not know. I have a valid placard, and that is all anyone needs to know.”
• “I do not owe anyone personal medical details. I have the placard because I legitimately need it. Have a great day!”
• “I understand the curiosity, but I do not share my medical information with people I do not know. My doctor and the state have already confirmed my need for a placard.”
• “My health is private. I have the parking permit for medical reasons that my doctor and the state have approved.”
• “My doctor and the DMV already handled the part where someone decides whether I need it. That someone was not you.”
• “You should tell the state they issued my placard incorrectly. I am sure they will put you in charge immediately.”
• “If invisible disabilities came with neon signs, we would not be having this conversation.”

“Why do you need so many medications?”

• “Each medication helps manage a different part of my condition. They work together to keep me stable.”
• “I know it looks like a lot, but each one plays a role in keeping my symptoms under control.”
• “My condition is complex, so it takes more than one medication to manage it well.”
• Because my body likes variety. It malfunctions in several exciting ways each day.”
• “If I could fix everything with one pill, I promise I would.”
• “My illnesses are overachievers, so my medication list has to keep up.”
• “Great question. Which part of my medical file would you like me to fax you first?”
• “If you had my symptoms, you’d ask for a pill organizer the size of a suitcase.”
• “Let’s just say my immune system likes to keep things interesting.”

“What do you mean you can’t climb the stairs? You’re just being lazy.”

• “I am not being lazy. My body simply cannot manage stairs safely. That is a medical reality, not a choice.”
• “My ability to use stairs is a medical issue, not a topic for debate. I know what my body can and cannot do.”
• “I do not discuss my medical limitations with people I do not know. I avoid stairs because it is unsafe for me, not because of laziness.”
• “I do not need to prove or justify my physical limitations to anyone. If I could climb stairs safely, I would.”
• “My limitations are medical, not motivational. I follow what my body and my doctor tell me, not what strangers assume.”
• “If I were lazy, I’d pick something easier than battling my own body every day.”

“Why are you so negative all the time?”

• “I am doing my best. Living with chronic illness is hard, and some days are heavier than others.”
• “I am not trying to be negative. I am just being honest about what my body puts me through.”
• “It may sound negative to you, but it is simply my reality.”
• “I talk about my health because I live with it every day. That is not negativity. That is honesty.”
• “I do not get to take breaks from my health issues, so the topics I talk about reflect the life I live.”
• “Oh absolutely. I wake up every morning excited to disappoint the positivity police.”
• “If you experienced my symptoms for a week, you’d understand my tone perfectly.”
• “I am reacting to real problems. My body is not exactly showering me with inspirational quotes right now.”
• “You’re confusing negativity with honesty. I do not have the luxury of pretending everything is fine.”

“Why aren’t you cured yet?”

• “Because my condition is chronic. It does not have a cure, at least not yet.”
• “I wish it were that simple. My condition is chronic, and management is the goal. There is no cure for it…yet.”
• “Because chronic illnesses do not magically go away.”
• “Trust me. If there were a cure, I would have Amazon-primed it to my house yesterday.”
• “I am still waiting for my body’s warranty department to call me back.”
• “Apparently, my illness missed the memo about resolving itself quickly.”
• “I would love a cure. Unfortunately, my condition responds to reality, not wishful thinking.”

“It must be nice to stay home and relax all day.”

• “I know it might look that way from the outside, but most of my time at home is spent managing symptoms and trying to get through the day.”
• “I understand why you’d think that, but resting at home is something my body needs, not something I choose for fun.”
• “I do spend a lot of time at home, but it’s because my health requires it, not because it’s relaxing.”
• “Yes, nothing says relaxation like pain, fatigue, and a stack of medical appointments.”
• “If this is relaxing, I would hate to see what you consider stressful.”
• “Sure is. I especially enjoy the part where my body forgets how to function.”
• “Yes, I just love hibernating at home and missing out on all the fun!”
• “It is nice. I’ve had so much time to perfect giving myself injections, and keeping up with all my medications and doctors’ appointments is just the icing on the cake.”
• “Totally. My body falling apart in the comfort of my own home is the height of luxury.”
• “Oh, it’s fabulous. I wake up every morning wondering which symptom will cancel my plans today. Very relaxing.”
• “Yes, I am living the dream. Who needs hobbies and a life when you can lie on the couch all day in pain?”

“Only people in wheelchairs are supposed to use these toilets!”

• “Accessible bathrooms are for anyone with a disability, not just wheelchair users.”
• “The sign says ‘accessible,’ not ‘wheelchair only.’ I am using the one that is safest for me.”
• “Good news. Accessible toilets are for more than one type of disability. Surprising, I know.”
• “Wow. I had no idea you were the bathroom police. Do you have a badge?”
• “Fascinating. The sign says ‘accessible,’ not whatever you personally imagine.”
• “If only my disability were as obvious as your confidence in being wrong.”

“Have you tried meditating?”

• “Meditation helps me manage stress, but it doesn’t treat the medical parts of my condition.”
• “I do meditate sometimes. It’s helpful, but it can’t replace actual medical treatment.”
• “I’ve tried it. It’s good for my mind, but it doesn’t change the physical symptoms.”
• “Meditation is part of my self-care, but it isn’t a cure for my condition.”
• “Yes. I meditated so hard my chronic illness packed its bags and left. Oh wait… no it didn’t.”
• “Absolutely. I close my eyes, focus on breathing deeply, but somehow my immune system still keeps doing whatever it wants.”
• “Yes, I’ve tried meditating. Unfortunately, my body never got enlightened enough to stop being sick.”
• “Meditation is great. It just does not happen to cure inflammation, joint destruction, or organ issues.”
• “Oh, totally. I sit quietly, breathe deeply, and my immune system still acts like a toddler with scissors and a tube of lipstick.”

“Have you tried functional medicine?”

• “I’ve looked into it, but my condition needs medically proven treatments to stay stable.”
• “Some people find it helpful, but my illness requires the care plan my specialists recommend.”
• “I appreciate the suggestion. For my condition, though, functional medicine on its own isn’t enough.”
• “I’ve explored different approaches. My doctors and I have found that evidence-based treatments work best for me.”
• Yes, and shockingly, my chronic illness did not vanish after a $300 supplement panel.”
• “I tried it. My disease was not impressed by celery juice and personality quizzes.”
• “Amazing idea. Let me swap my specialists for someone who thinks inflammation is caused by my ‘chakra alignment.’”
• “I looked into it. Turns out my illness needs actual medicine, not a wellness podcast.”
• “Yes, I tried it. My autoimmune disease said, ‘Cute, but no.’”

“Have you tried yoga?”

• “Yoga can be helpful for some things, but it doesn’t address the medical parts of my condition.”
• “I’ve tried yoga before. It helps a little with stress, but it doesn’t change my underlying symptoms.”
• “I appreciate the suggestion, but my body just can’t safely do all the movements, so I follow what my doctor recommends instead.”
• “Yes, I did yoga. My joints applauded by dislocating themselves.”
• “Great idea. Let me fix my autoimmune disease with glorified stretching.”
• “I love yoga. It helps my stress. It does not, however, rewrite my medical diagnosis.”
• “Sure. I did a downward dog, but my immune system kept doing a downward spiral.”
• “Yes, I tried yoga. My chronic illness did not find it nearly as life-changing as Instagram promised.”

“Why don’t you try ivermectin?”

• “I know people talk about it a lot, but my doctor has explained that it isn’t safe or effective for what I’m dealing with.”
• “I appreciate the suggestion. My illness requires different medications that are designed for my diagnosis.”
• “I’m following the treatment plan my medical team has created. Ivermectin isn’t part of what they consider safe or effective for me.”
• “Sure, I’ll ask my doctor if I should take a horse dewormer for my autoimmune disease. I’m sure he’ll agree.”
• “Right, because when my immune system malfunctions, obviously the solution is livestock medication.”
• “Great idea. Let me just trot over to the barn and ask a horse what dosage they recommend.”
• “Yes, I considered it. My chronic illness politely declined the offer to be dewormed.”
• “If ivermectin fixed chronic illness, rheumatologists would be out of business, and the Tractor Supply store would be a hospital.”
• “Amazing. You solved my complex medical condition with a farm supply product.”
• “No thanks. I prefer medicine meant for humans.”

“You should try intermittent fasting!”

• “Intermittent fasting can help some people, but it doesn’t address the medical issues behind my condition.”
• “I appreciate the idea. My illness needs a treatment plan that’s a bit more specific than fasting alone.”
• “I’ve looked into different approaches, but fasting isn’t something my body can safely handle with this condition.”
• “Oh, perfect. I will just starve my chronic illness into behaving.”
• “Great idea. Let me fix my medical condition with a diet trend from a TikTok wellness coach.”
• “Sure. I’ll just tell my cells to wait until my eating window to malfunction.”

“If you just gave up all sugar, your cancer would go away.”

• “I know people mean well when they suggest that, but cancer can’t be cured by eliminating sugar. My doctors are managing it with real medical treatment.”
• “Diet can support my health, but it can’t cure cancer. I’m following the treatment plan my oncology team recommends.”

“I appreciate the suggestion. Unfortunately, cancer is much more complex than diet changes alone.”

• “Eating well is helpful, but my doctors have explained that cutting sugar isn’t a cure for cancer
• I’ve looked into many approaches, including dietary ones. Unfortunately, no diet can cure cancer. My doctors are managing it with real medical care.”
• “If only it worked like that, my oncologist could retire and open a bakery.”
• “I gave up sugar once. My cancer didn’t notice, but I got very cranky.”
• “Imagine if curing cancer were as easy as skipping cupcakes. The medical world would be so relieved.”
• “Amazing. My oncologist spent a decade in medical school when all she needed was a sugar-free cookbook.”
• “Right, because cancer cells are notoriously afraid of fruit snacks.”

The Hidden Reality of Being Medically Complex

Having to make medical decisions on a frequent basis is exhausting, not just physically but mentally and emotionally. Even after your doctor explains your options and you have done your own research, the uncertainty does not go away. You still lie awake wondering, Will this treatment help me or harm me? Will it trigger a flare or cause damage I cannot undo? What is the cost of not treating my condition? Will it cause me to become non-functional? Is the treatment worse than the disease?

When you have multiple conditions, the anxiety multiplies. You start wondering if the medication for one illness will interact with the treatment for another, or if managing one condition will cause the other to spiral. You sit across from one specialist who is an expert in one disease but does not really understand another major diagnosis you have. The label “medically complex” often makes doctors hesitant to treat you with the same confidence they might have if you only had one condition.

Too often, there is little or no research on how multiple conditions interact, and specialists hesitate to offer a full range of treatment options because of this. They cannot answer your questions because they simply do not know. You are left trying to piece together advice from different doctors who rarely talk to each other, hoping their recommendations do not cancel each other out or make things worse. When lab results show a new issue, neither you nor your doctors can be certain which treatment caused it, or whether it is an entirely new problem.

Often, you have to decide which condition is most pressing to treat. Can you live with the challenging symptoms of one condition in order to focus on a more life-threatening one? When a condition is clearly life-threatening, it is easier to know it must be treated with priority. But sometimes, the choice is not so clear. You may find yourself having to decide whether to treat the condition that causes life-altering pain or the one that is quietly damaging one or more internal organs. Which is more important for your quality of life right now? Which could cause the most harm long-term if you delay?

These are nearly impossible questions to answer. There is often no research to guide you and multiple doctors may give conflicting advice, each shaped by their own specialty and perspective. You are left to make decisions without the data or information needed to make an informed choice, and the resulting anxiety—both while making the decision and long after it is made—can be overwhelming. Did you make the best decision? Should you have chosen differently? You will never have certainty.

If you have a rare condition, one that only a handful of specialists in the country truly understand, it adds another layer of fear. You may have to travel long distances or wait months for an appointment, knowing that even a small misstep could have serious consequences. Sometimes you realize you know more about your own illness than most of the people treating you.

Medications and treatment regimens for rare diseases are often incredibly expensive, simply because a drug made to treat only 20,000 people costs more to produce and has fewer researchers working on it than one created for a widespread condition. A rare disease has only a small “market,” while something that affects millions of people is far more profitable for drug and research companies. That leaves those of us who are medically complex with few choices, and what options exist are often priced far beyond our reach.

Every decision feels like a risk. You could get better. You could get worse. The interaction of multiple treatments could make you far worse, and neither you nor your doctor may be able to identify what caused your new symptoms. It can take months of trial and error, changing one drug or supplement at a time, just to get back to where you started. Or you might stay the same, stuck in a body that feels unpredictable and fragile.

You learn to ask hard questions and to accept that sometimes doing your best with what you know is all that can be done. Over time, you learn to live in the space between uncertainty and endurance, gathering what strength you can for the choices that must be made today. You notice the small moments when your body cooperates, and you practice grace when it does not. Living with medical complexity means accepting that clarity may never come, yet still moving forward, balancing hope with realism, and fear with faith that you will find a way through.

by Jan Mariet 10/31/2025

Dear Healthy People,

Remember that health is not guaranteed. Chronic illness or disability can strike anyone: young or old, rich or poor, careful or careless. You can eat perfectly, exercise faithfully, stay positive, and do everything “right,” and it still might happen to you.

No amount of money, no circle of family or friends, no dedication to your job or your dreams can prevent it if it comes. Chronic illness and disability arrive uninvited, often without warning, and always without permission. They are not punishments, not failures, and are not consequences of not trying hard enough.  They are simply realities of life that any person may face.

So, appreciate the ordinary things your health allows you to do: working, moving freely, making plans, and being independent. Those things feel permanent until the day they aren’t. If illness or disability takes hold, it can alter every part of your life, no matter how much you’ve worked for or built.

Gratitude for your health doesn’t mean living in fear; it simply means recognizing that what you have today is not promised tomorrow. Live fully, with compassion for those who are traveling a more difficult road, and with awareness that you could be standing in their place at any moment.

Sincerely,

Chronically Ill, Disabled People Who Never Thought They’d Be in This Position

I often wonder why people, most of whom have never even heard of my illness, let alone lived with it, believe they’ve discovered a ‘cure’ that somehow escaped the knowledge of doctors and researchers who have dedicated their entire careers to this condition. Yet, I’m expected not only to be grateful for these unsolicited and often dangerous suggestions but also to gamble with my health and well-being on the basis of hearsay and unproven treatments.

Why would I take such a risk? Why should anyone? And why would someone without medical expertise in this specific field think it appropriate to try to persuade me otherwise?

I have to ask, why would someone even suggest this to me, much less expect me to try it? Do they not consider the possible outcome if their ‘miracle cure’ goes wrong?

Is my health so trivial to them that they can toss out reckless advice without thought for the consequences? Or is it simply that my honesty about the depth of my illness makes them so uncomfortable that they feel compelled to fill the silence with quick fixes, regardless of how harmful those fixes might be?

At times, it feels less like concern and more like dismissal; as though they care more about easing their own discomfort than about truly supporting me. And if that is the case, then I cannot help but wonder: do they care about me at all?

I also find myself wondering, do they believe I’m not really trying to get better? Do they truly think there’s some easy “cure” I’ve simply overlooked, as though I haven’t spent years seeking help, researching treatments, and enduring therapies?

Sometimes, I even question whether they assume I don’t actually want to get well, as if living with a serious illness is somehow a choice. That thought crosses my mind more than I care to admit, and it stings; not because it’s true, but because it reveals how little they understand the reality of living with a chronic condition.

I have doctors and medical professionals who have tried, and who continue to try, every option available. They haven’t given up, and neither have I. But part of this journey means facing reality: that not every illness has an easy fix, and that sometimes the best we can do is manage, adapt, and keep searching for ways to live as fully as possible.

I’ve endured the fallout of failed treatments: side effects strong enough to drop an elephant, one new medical issue piling onto another, dangerous drug interactions, worsening symptoms, and an ever-growing list of physical and mental limitations, all in the name of being open-minded and willing to try anything that might offer relief. And yet, despite all that I’ve risked and suffered in pursuit of wellness, there are still people who imply that I’m not ‘doing enough’ or that I’ve somehow overlooked an easy fix. Their casual suggestions dismiss not only my life-experience but also the years of effort, sacrifice, and resilience it has taken just to keep going.

The truth is, my persistence is proof of my strength. I have faced setbacks that could have broken me, yet I continue to show up, to adapt, and to live as fully as I can within the limits my body places on me. My willingness to keep trying; despite pain, disappointment, and uncertainty, shows that I haven’t given up on myself or on life. If anything, it proves that resilience is not about finding a cure, but about finding the courage to carry on in the face of what cannot be cured.

Like the old English proverb says, “That which cannot be cured must be endured.” I have endured. I continue to endure. Not because I’ve given up, but because true strength lies in living fully, even when there is no cure.

by Jan Mariet, 9/26/2025

When people say, “I never saw the signs,” about someone who is struggling, it often isn’t true. The signs are usually there — quiet, subtle, easy to miss — not only by friends and family, but sometimes even by the person living with chronic illness.

Living with a long-term illness is more than managing symptoms. It’s coping with losses: loss of health, career, independence, purpose, or even identity. Those losses often come with fatigue, grief, frustration, and emotional pain. Recognizing when you’re struggling is not weakness; it’s the first step toward getting support.

Hiding the Struggle

• Many of us deny how bad things are, because we don’t want to burden others or admit (even to ourselves) how overwhelmed we feel.
• We may avoid conversations that leave us vulnerable.
• We might fear venting in case it pushes friends away.
• Negative thoughts creep in: “I deserve this. I’m being punished. I’ve failed. This is my fault.”  These beliefs can drive us into deeper isolation.

The Isolation Cycle

• When we feel optimistic, we make plans, but when pain or fatigue that force us to cancel, guilt and disappointment push us further into withdrawal.
• Isolation fuels depression, which fuels more isolation. It becomes a toxic cycle that feels impossible to break.
• Even enjoyable hobbies fade away, not because we don’t want them, but because our bodies won’t cooperate. This deepens the sense of helplessness and grief.

Everyday Signs of Struggle

• Self-care slips: irregular meals, skipped showers, neglected laundry, unkempt appearance. These aren’t just a “lack of motivation.” They’re signs of emotional and physical overload.
• Sleep disruption: oversleeping, staying awake all night, or restless exhaustion from pain or worry.
• Irritability: lashing out disproportionately is often the language of distress, not anger.
• Cognitive fog: losing your train of thought, abandoning books or TV shows because you can’t follow them, forgetting simple tasks. Your energy is going into survival mode, leaving little energy left for focus.
• Talking only about illness: when symptoms dominate every conversation, it’s often because life feels consumed by medical trauma, leaving little else to share.

The State of Your Space

Our homes often mirror our internal state. Signs of struggle may include:

• Clutter piling up in unusual places.
• Unopened mail, unpaid bills, unanswered texts.
• A heavy or dark atmosphere, poor lighting, and constant background noise to drown out inner thoughts.

This doesn’t always mean laziness or disorganization.  It may simply reflect emotional turmoil, physical limits, or sheer exhaustion.

Recognizing the Signs in Yourself

If you notice these patterns in your own life, it doesn’t mean you’re failing. It means you’re human, living with something unimaginably hard. Chronic illness is not just a physical condition; it’s an ongoing emotional and mental challenge.

When you recognize the signs in yourself, try not to judge them. Instead, see them as signals: I need help. I need connection. I need compassion from others and from myself.

I want to live fully, with purpose, independence, and stability, but the pain, fatigue, and flares of my disability and chronic illness pull me back every time, no matter how hard I try.

I keep trying anyway, knowing full well it will end in defeat, because the alternative is just giving in to the pain and emptiness. The hardest part is the difference between the life I image, and the only one my body can actually endure.

At times, I accept my fate. There are times I rage against it with such determination and strength that I could rebuild our world into the paradise it was always meant to be. But like a moth drawn to the intense flame, it always leads to the most predictable end – being engulfed, so temporarily, in the warm of the flame, and then abandoning the heat and light to the coldest, darkest end, laying crushed and helpless near the burned ashes in the pale morning glow. And inside, realizing that none of it made the least bit of difference.

Today is my 38th straight day of being alone, having nothing in particular to do, no particular contact with anyone else, and stretching mundane tasks across endless days just to have something, anything, to do. It is the 38th day of being crushed by the isolation of being totally and utterly useless and unreliable.

I’m not even particularly sad about this. I’m not anxious, or unhappy, or even overwhelmed. I’m just here, existing without any meaningful purpose, occasionally starting projects I know my physical body will never be able to complete, and feeling completely engulfed by the unending tedium that fills each endless day.

I make no decision more important than do I go to the grocery store today to pick up three items, or wait and go in two days and pick up six items. I have no plans more important than do I go to the drug store and walk around, or sit around at home staring a wall or out the window.? Do I stay at home, or walk a short distance even though it means pushing past pain that I’m so good at hiding that no one could scarcely guess how intense it is?

Sad, happy, defeated, empty – the words mean nothing except a dull monotony of minutes ticking by… Hours ticking by… Days ticking by… A life that is ticking by…

Although I am starved for conversation, I rarely call or contact anyone. The only thing I have to share is the monotony of endless empty minutes, or disjointed memories of a life from so long ago, and once-interesting stories that lost their luster a dozen tellings ago.

After years of medical treatments, hospitalizations, recoveries, re-hospitilizations, attempts at returning to a purposeful life followed by inevitable failure after destructive failure, what do I have worthy of being said, much less shared? I bore myself, and hear my own pain in my forced positive conversations.

I am caught in an endless cycle of adversity, isolation, partial recovery, resiliance, rebuilding, re-emerging, strength, pushing above and beyond my puny physical abilities, and crushing defeat. Do I wallow in the agony and isolation of defeat, or try again? I always try again, and the cycle repeats, endlessly. At this point, even I recognize the futility of unsubstantiated hope. I am that moth draw to the flame that will ultimately burn my very soul, with the only alternative the coldness of laying, spent and lifeless, in the cold, damp morning sand.

I have no inspiration left. I go through the motions, through the expected rhythms of daily life in complete exile, sometimes pushing myself in meaningless tasks, sometimes allowing myself to just give in the monoteny of sleep and scrolling, and always, always, being filled with the incredibly emptiness of near-complete isolation.

In many ways, I wish I was sad, or dejected, or depressed, because those things eventually end. Instead, I am completely engulfed in waves of numbing futility. If I care, I will be disappointed. If I try, after only the tiniest bit of success, I will be overwhelmingly crushed by inevitable failure. If I even dare to hope, I won’t just be disappointed, but will be overcome by desolate failure. I haven’t given up. I’ve just realized the futility of trying to be something I have no ability to be.

Today is yet another day, of empty, useless minutes ticking by. I think this numbness I feel is my decision that it is better to feel nothing at all than to continue in this endless cycle. Is a choice between giving in or repeating a painful, self-defeating, endless cycle really any choice at all?

My RBC, hemoglobin and hematacrit have been very low for over 8 months now. Having had chemo done twice in the past 2 ½ years easily explains that, but it is very hard to live any kind of life when these three items are so low.

It leaves you tired, exhausted, sick-to-your-stomach, unable to keep food down, and just feeling like you need to sleep 24/7. If you even sit down in a stiff-back chair, you’ll fall asleep. It can also make your blood pressure very low. One day, mine was 74/43! (and yes, I immediately went to the hospital for that.) It isn’t a great quality of life when you spend 20+ hours a day sleeping!

My RBC is 3.04 which is very low. In range is 3.8-5.10.

My hemoglobin is 8.2 which is dangerously low. In range is 11.7-15.5.

My hematacrit is also low. It is 27.4. In range is 35-45.

I have severe anemia, but not iron-deficient anemia that we typically think of. I have no iron deficiency.

I often get pernicous anemia (a lack of vitamins D and B-12,) because I can’t absorb them due to having short bowel syndrome, but I get injections of these daily through my TPN.

My anemia is pure and simple a lack of red blood cells. This often happens after intensive chemo, but mine is not resolving. There is a good chance my bone marrow isn’t producing enough red blood cells, and the ones that are being produced are the wrong shape and size.

My kidney function is less than half what it was 2 weeks ago (which is very scary.)

My Creatinine is very high (much higher than usual) which shows that something is taxing my liver.

There is a medication that can help me. I’d need to get an injection at a hematology center every two weeks, until my blood levels come up. I’ve been trying to get into one and get set up for months. I’ve been there twice already, but they didn’t feel it was “that bad” and wanted to “wait and see.”

They made my next appointment for the end of October! (which is two months from now!) I did a lot of praying and came to the conclusion that I needed to put on my “pleasantly persistent” persona.

I sent a note to them saying I’m not sure I’ll still be here in 2 months for that next appointment, that I’ve already been in the ER on three different occasions and was hospitalized for 15 days all in the past month, that I am weak and shaky, I’m in the bed 18-22 hours per day, and this isn’t much of a life. I reiterated that I need help NOW, not two months from now. I ended it by simply saying “Please help me!”

I think it hit a chord with them, because the very next day, they called and worked me in, did all the labs they needed to do to prove to the insurance company that I did need this insanely expensive treatment, and I’m now set up for my first four treatments!

“Pleasant persistence” is a very powerful attribute.

UPDATE: After my first Pro Crit treatment, I started to feel better. My labs increased a bit. I felt less tired and less fatigued. Now, three months later, I feel like a new person! My RBC, Hemoglobin, and Hematocrit are still low, but not “scary” low anymore.

Being your own advocate (or being the squeaky wheel) is essential in our healthcare system. I’ve always found that the key is to stay pleasant (pleasantly persistent). Yelling, shouting, and threatening don’t tend to get you anywhere (and besides, those attributes are just not in my nature) but if you stay pleasant, yet insistent, I’ve found you can effectively advocate for yourself and get what you need.

Today was a really tough day for me physically. I was weak, dizzy, nauseous all day, and my balance was really off. And I had a blood lab, a doctor’s appointment, and then my cleaning ladies came (and we all know you have to straighten up a bit before they come.) I was shaking so hard and my vision was blurry. I wasn’t sure I could make it through the day, but I was determined to push myself to try.

But here is the other side of things. I had a doctor’s appt at the time my home health nurse usually comes to my house. She rescheduled my home health to 7am this morning, so I got it done early, and it was done and over with way before my doctor’s appt. What a blessing!

My ride (a volunteer from the American Cancer Society’s Road to Recovery Program) showed up right on time to pick me up. He’s driven for me once before, and he is just a delightful gentleman (who has Multiple Myeloma, a type of blood cancer. He’s had it for 19 years, and does stem cell therapy to keep on keeping on.) He drives as a way of “giving back” to the cancer community. He is a great driver. He likes to have conversations while we drive to the appt. He waits in the waiting room the whole time (reading a book on his phone) and then all the way back we have nice conversations. What a wonderful blessing! We have the nicest chats, and very little of it is about cancer. It is so nice to talk about anything other than cancer!

My cleaning ladies came early today, right after I got home from my doctor’s appt. (Their boss texted and asked me if that would be okay.) I felt so sick, and all I wanted to do when I got home was crawl into bed and rest. Those wonderful cleaning ladies immediate stripped the bed and put on fresh sheets, so I could lay down in my own bed and rest! Wasn’t that thoughtful of them? I told them they could vacuum around the bed and I wouldn’t even notice, and I certainly was true to my word. I’m amazed by their kindness. I hadn’t even asked, but they just realized I wasn’t my usual upbeat self and that I didn’t feel good. What a blessing that was! Little things mean so much!

When I woke up from resting, I felt a bit better. Then we had a huge rainstorm, and I just love the sounds and sights of storms. It takes me back to when I was a small child. When there was thunder and lightning, my dad would call me over to stand next to him by the huge picture window in the front of the house. He’d always say, “Come on, Janice. Let’s watch all the pretty lights in the sky.” Because of him, I’ve never been afraid of thunderstorms. And to this day, I find myself standing at the window, looking for all the pretty lights. What a blessing that was. Somehow, my dad knew just how to take the “scary” part away, and just see the beauty in loud crashing thunder and crackling lightning.

I guess my point is, I could have grumbled all day about things that didn’t go my way, but truth be told, there were more blessings today than I could even imagine until I wrote them down and counted them.

Count your blessings, name them all one by one.
Count your many blessings, see what God has done!

I tend to be a person who thinks of what I can do rather than what I can’t do.  I tend to look for the joy in situations rather than let myself be unhappy.  Just for today, I am allowing myself to do something I have never fully done before – think of what I can’t do.   I sometimes start along this path, but become overwhelmed by the sheer enormity of what I can’t do.  Then I have to stop simply to spare myself from the magnitude of it. 

First, there are the things I have never been able to do.  These include things like snow skiing, water skiing, digging a hole with a shovel, holding a baby on my hip, sitting cross-legged, being pregnant or giving birth, playing contact sports, running races – things like these. 

Second, there are the things I once could do, but no longer can.  This list is so much longer.  These leave a sorrowful place in my heart.  I once could ride a regular bike, sit on the floor, run, climb a tree or ladder, walk a mile or two, sit on low furniture, walk on soft sand, wear flip-flops, ride a horse, go canoeing, swim in a lake, roller skate (although that always was a struggle,) bend and pick things up from the floor, lift heavy boxes, go camping and sleep in a sleeping bag, climb stairs, do intricate embroidery and needle crafts, hold a book in my hands to read it, open a soda can or a water bottle, walk my dog, do martial arts, manually type without having to use speech-to-text, use a cell phone without hitting multiple buttons by mistake and disconnecting, partner dancing, walking across a grassy field, mowing my lawn, line dancing, vacuum my house, mop the kitchen floor, taking a bath instead of a shower, riding on the back of a motorcycle, playing the guitar, standing in front of a classroom, eating at a restaurant (due to extreme food restrictions), traveling in any way other than a medical transport, holding a baby in my arms, singing songs and hymns in a clear, beautiful voice, and even working a full-time job.  It also includes things that I’d prefer not to mention, like being sexually intimate, or reliably continent.  The list is so long that I’ve only been able to touch upon the substantiality of it.    

You learn to lie about how you are doing.  People ask how you are doing, but they don’t really want to know unless it is mostly good news.  I can’t blame them for that – it is human nature.

I can’t bring myself to lie when I’m asked, “how are you?” by saying “I’m fine.” so I usually respond, “Oh, I’m hanging in there.”  Or “Well, I can’t complain.  Well, I could, but who wants to hear that?” with a well-timed laugh.  It ends the query and allows me to quickly change the subject.    How many times can you tell a friend that you are not doing well, or that you are getting worse?  “How are you?” isn’t really a question in our society.  It is a greeting with an expected response of “I’m fine.” or a very brief mention of a small (and somewhat insignificant) problem.

We all have something about ourselves that we wish we could change – the shape of our nose, the texture of our hair, our figure, etc.  At times, these things can make us feel like something is wrong with us, or if only we could change some basic feature, our lives would somehow be enhanced or that true happiness would await us.  Some things we can change, by getting a perm, having our teeth straightened, or devoting ourselves to a rigorous exercise routine and healthful diet. 

For others of us, what makes us feel like an outsider cannot be fixed or changed.  People with facial skin discolorations, burns, or growths, people who are missing body parts, or who have congenital malformations that can’t be changed – these people are in a different category than those who simply abhor their Roman nose, their frizzy hair, or flabby thighs and thick ankles.

There is part of a poem I learned as a child that says, “I cried because I had no shoes, and then I met a man who had no feet.”  It is supposed to convey the message that the boy with no shoes has nothing really to complain about because others are much worse off in the world.  In my mind, I despise this poem.  While it is very sad that a person has no feet, it certainly doesn’t minimize the fact that the boy with no shoes has a problem, too.  He still doesn’t have any shoes! 

I’ve always thought that minimizing someone’s problem by reminding them that others have it worse conveys the message that your issues, your problems, are not really a big deal, and you are wrong to have even commented on them or concerned yourself with them.  Well, if I lived in Wisconsin in the winter and had no shoes, my “problem” is very real to me, regardless of who is in a worse condition. 

When we remind others that their problems aren’t really significant, we are judging their life journey, and finding their needs and concerns to be inconsequential.  I don’t believe in minimizing a person’s needs or insecurities by insisting that their perceived problem isn’t so bad.

For most of us, others barely notice what bothers us.  But for a few of us, our issues are hard to ignore.  Even the most compassionate person has a hard time not turning away from a person with severe, disfiguring facial burns.  We certainly don’t think “Wow, I’d like to get to know that person.” when we walk past them on the sidewalk.   We look away and then get away as quickly (and as unnoticeably) as we can.  (And later, we feel very bad about having done that.)

While not as extreme as having disfiguring, gruesome facial wounds, those of us born with functional disabilities fit into another category – those who used to fit in but who are now an outsider.  Those of us with progressive disabilities and chronic illnesses often find ourselves pulled from “fitting in” to being an outsider as our illness progresses, and our limitations increase. 

Many times, our loved ones react in strange ways to our progressive medical and physical changes.  Some blame us as if we caused it to happen.  Some feel that we should be able to do everything we did before if only we’d really try and stop being lazy. 

Some pretend the changes aren’t even there, which leaves the person with the progressive disability or chronic illness feeling gaslit.  And some of our loved ones think they can “cure” us, and become angry with us if we aren’t willing to try every crackpot idea they’ve read about (even though our own doctors insist it won’t help or could actually make things much worse.)  Often, it can be as if our loved one blames us if their efforts don’t lead to a cure.  This is especially difficult, because it changes (and often ruins) the dynamics of relationships, at the same time both are struggling to cope and need the support of the other so much. 

While I’m not claiming that one type of loneliness is harder to deal with than another, I am stating that there are different types of loneliness.  Some we can change, by learning social skills, seeking out like-minded individuals, or putting ourselves in situations where we will meet others whom we might enjoy.  For others, the progression of illness and the unreliability of wellness pulls us away from almost all kinds of social inclusion.   We no longer fit-in with our old friends, and we are too isolated by our medical issues to make new friends. This type of loneliness includes the mournfulness of great loss and an overwhelming sense of defeat.

Heredity is a strange thing.  It can give your child shimmering blue eyes, dark, long lashes, or a large, Roman nose.  You can end up with a slender build, a large bust, a short stature, dimples, or male-pattern baldness. 

Heredity can lead to some wonderful happenstances – like cousins who look like twins, or coppery red hair generation after generation.  Heredity can also lead to some unpleasant issues, like rheumatoid arthritis, kidney disease, or congenital deafness. 

It almost seems cruel that within a family tree, some have tendencies toward being healthy and robust, while others find themselves on the losing side of the genetic crapshoot we call life.  Even among siblings and cousins, the genetic roulette wheel treats some to great fortune while leaving other family members in a completely different situation.

While I am one of those people who finds themselves with a variety of conditions that tend to be caused by the negative part of genetics, there are several traits I quite knowingly obtained from certain family members and ancestors, and those are fortitude, perseverance, stick-with-it-ness, sheer determination, and adaptability. 

It is also true that there are other things I quite knowingly gleaned from my family tree. Some I have directly inherited, while others are believed to have a strong genetic component.

• Congenital hip dysplasia (Developmental hip dysplasia)
• Psoriatic arthritis
• Ankylosing Spondylitis
• Degenerative Disk Disease
• Crohn’s Disease
• Inflammatory Bowel Disease
• Chronic Kidney Disease
• Scoliosis
• Spinal Stenosis
• Sjogren’s Disease
• Myotonic Dystrophy, Type 2

We have no control over having an inherited condition.   It is as randomly assigned as eye color or foot size.  However, what you make of these conditions is within your purview.  No one denies that having chronic conditions which cause you pain and disability can be overwhelming.  Personally, I think that finding those small moments of joy, that beautiful sunset, that walk with a friend, or a new bloom in your garden, are the small victories that make life worth living.   It doesn’t reduce or relieve the pain, it doesn’t improve your mobility, cure your anxiety, or fix your medical issues, but for that brief moment in time, joy can be the best medicine there is.

Life does not mete out pain, illness, or disability fairly.  Sometimes — most of the time, actually — we just have to make the best of what life has given us and find joy where we can.