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What's a hidden health issue you live with?
Airing private health matters can often be seen as impolite or embarrassing, but the older I get, the more I realize nearly everyone has at least one thing (and often more) that they're having to deal with silently or behind closed doors.
What's a hidden health issue you have to manage?
What is it like for you?
How does it affect your life?
What do you want other people to understand about it?
Do you share this with other people? Why or why not?
Share only what you're comfortable with.
I suffer from migraine headaches and basically chronic daily headaches. I have a number of triggers that I’ve learned to avoid like some foods, some allergens, etc. I finally (after about 30 years of trying) have it under control with meds and medical devices.
It first started when I was a teenager. I would just get headaches about every day or every other day. I would take over-the-counter meds for them. At the time that usually meant Tylenol or Excedrine (which if I recall is just aspirin, Tylenol and caffeine). But the Tylenol didn’t work very well by itself and the caffeine in the Excedrine caused sleep issues. Eventually I went to various neurologists and tried a number of different meds over the course of a few decades. I was able to get them down to about one headache every 3 days or so, and the breakthrough migraines were not too frequent. It made me a cranky person to be around and made it difficult to get work done or interact with people.
There are some very new therapies that I’ve started recently, including monoclonal antibodies like Ajovy, Emgality, and Vyepti. They are pretty amazing. I give myself an injection once a month and usually have no headeaches for 3 weeks, and then maybe one or 2 the last week of the month which I manage with Tylenol, and some other Rx meds. I also use a Cefaly device which is a trans-cranial magnet stimulation device that stimulates the trigeminal nerve. This can abort a headache in progress and if used daily can reduce the number of headaches you have. I didn’t find it to be as effective as medications, but still find it useful in my arsenal of things to throw at a headache.
I will generally tell people about it if it comes up. There’s not too much social stigma with getting headaches, other than people not understanding how intense and debilitating they can be. I gather from talking to others that my migraines are on the mild end of things (which is weird to say because of how bad they make me feel compared with normal headaches). I don’t usually get visual auras or feel nauseous, for example.
I used to get terrible headaches several times a week. Turns out I just needed glasses. My vision wasn't awful, 20/30 in one eye and 20/40 in the other, but it was just enough that a full day of existing would basically have a 50/50 shot at a migraine. Headaches are now really uncommon for me.
I don't really talk about this but I find it all really scary. I have a couple of brain tumors. When it first became an issue, the neurosurgeon said radiology should take care of it, and the radiologist said the neurosurgeon should take care of it. My understanding at the time was that if I had radiosurgery and it didn't work out, manual surgery would become more difficult and I'd never be able to do the radiology again. I thought as scary as it was, I should get the neurosurgeon to take it out, but I got pressured to have the radiosurgery, and I forgot all about that part, and really, not cutting in the brain is a lot less scary!
The part that was hard for me is that the tumors weren't killing me or really terrible things, but if you mention brain tumors you get responses that assume you're going to die and then I would have to laugh and say something like, "If you're gong to have a brain tumor, you want what I have... hahah." And it seemed like there was no where to really talk about how scary the whole thing was. So I had the radiosurgery, and everything was fine until last year when I started having symptoms again, but I didn't have insurance, and had stopped having my yearly MRIs, and it's not like the symptoms are debilitating, they are just annoying.
This year I finally got insurance and went for my MRI and not only has the old one grown, but there's a new one. No one actually wants to cut the old one out because it's located in an area that has a lot of other things happening, and it would be really easy to make me go blind, or lose my ability to swallow, or nick the main bloodline to my brain, and some other stuff that just makes me stare into the wall why they talk. But cutting it out is really the only option for removal, and it's harder now because I had the radiosurgery, and the new neurosurgeon can't believe they didn't just cut it out before. But like I said, the symptoms aren't debilitating, just annoying. So now I'm on a six month MRI schedule to monitor and measure growth rate, because if it does keep growing it can do things like make me go blind, lose my ability to swallow, restrict blood to my brain, yada yada yada.
There's also a new one, and it's just hanging out between the skull and the brain and hasn't actually touched the brain yet. Doc said if that was the only one, they'd just make a hole in my skull and pop it out, but since he wants to see if this other one will need surgical intervention, and doing both at once is better, they are going to leave it for now.
It's all just scary, and I can't just put it out of my mind because i experience those annoying symptoms that remind me that I might need multiple holes drilled into my skull, that I might lose sight in one of my eyes, that my left side of my face may look like I stroked, that I might lose my ability to swallow, or whatever, and it might not even make the symptoms go away, but make them worse. The doc said that there was about a 40% chance of an unwanted outcome with surgery. Monitoring growth seems like the right thing to do, but there's the added consideration that I am in my 50s. Currently I am mostly healthy and surgery is better when you're younger. The tumor could just grow at a snails pace, like it did before, then have a growth spurt, like what happened before, and by then I could be an age where the risk is higher for other crap because I'm old. Then again it may not grow again at all.
So anyway, it's not really a big deal, but it feels like one sometimes.
That sounds incredibly hard and scary. I'm sorry that you have to live with so much uncertainty and the reminders. Not to sound trite, but I hope you have support and people you can talk to about this.
Thank you! You perfectly summed up what's so hard about it "uncertainty." I don't really have anyone to talk with it about, but that's okay. I was able to get out all that was in my head here, and just doing so was a relief via release. And then you came along, and I could tell you heard me, and that was satisfying and validating enough. It's not really something I want to talk about because I don't really have any power at the moment, and talking about stuff puts that all front and center.
I don't know if you've considered psilocybin (magic mushrooms) but I read for years about studies using it to treat depression and PTSD and, importantly to me, existential dread for end-stage cancer patients.
I watched my grandfather die in a hospital. I was 29, he was the most meaningful person in my life, he was the first immediate family member of mine to die, and it was the first person I had ever watched die.
I suffered from PTSD for years after and suffered quite a lot of existential dread. I know how quickly time feels like it's passing and I could very clearly empathize with him and realized one day, if I'm lucky, I'll be dying in a hospital bed with my family while my grandson watches me die. It's only a matter of time, and time seems to be speeding up as I get older. I'm almost 38 now.
Sometimes I'll lay in bed at night and these intrusive thoughts will come to me where I try to imagine what death would be like, to know that I will simply cease to exist and my blood runs cold.
It got bad enough for me that I stopped sleeping well, and I thought that if psilocybin could help people cope that are actually facing death then maybe it could help me. I've tried several times now and, while the flashbacks to his death still happen occasionally, they don't carry the same emotional impact. I've thought about death since, but not with the same adrenaline/fear response. Sometimes I notice the knot in my stomach is gone.
I got started with a microscopy kit from /r/SporeTraders and some reading on /r/UncleBens. The process of getting to mushrooms took quite a long time, and the restorative qualities didn't happen for me on the first trip, but I also haven't taken a huge dose, just 4-5 moderate ones.
Certain drugs can also cause really bad interactions with antidepressants, so check if your meds are compatible!
What's a hidden health issue you have to manage?
I have debilitating periods.
What is it like for you?
Before I started taking hormonal birth control, I would vomit, have diarrhea, faint, and generally be miserable for 3-4 days a month.
How does it affect your life?
I regularly missed school and work. I fainted once at school. I was miserable.
What do you want other people to understand about it?
Not enough research is being done on it. Uterus health is largely ignored. Doctors will chalk it up to bad cramps, but this had to have been something more. I was tested for endometriosis, but they said they did not find any.
Do you share this with other people? Why or why not?
Yes! Mostly with other uterus-havers, but also anytime it comes up. I want everyone to take it seriously. Birth control (specifically the hormonal IUD) allows me to lead a normal life. I no longer get sick once a month, my moods are better, and I’m generally a much healthier person.
Generally hidden is my gout. There's no real visual symptom other than my weird gait because pain. It's manageable, but as noted early, I'm in pain fairly often. I tend to describe the pain as sharp, almost like something cutting me where it hurts, though sometimes it is a dull ache. When I have a flair up, however, wherever the flair is, the pain is crippling. Last time I had a flair up, it was in my right ankle, and it made it that I could barely walk 10 feet. The biggest challenge is that I'm afraid to make quick movements: quick bend-over or crouch to pick something up, jumping, running. I'm so wary about hurting myself that I tend to take things slow in the case of picking something up, or I just don't run or jump. I had once instance back when the first new Star Wars came out, I was crossing the street a block away from the movie theatre, but had crossed in the middle of the street as it was late and no one was driving by. I hopped up onto the median and then hopped off of it, and my hip gave out as it wasn't used to that sort of impact. So my 260+ lbs. body came crashing down. I was lucky enough to have practiced the art of fucking around with my friends and I was able to shoulder roll, rather painfully, avoiding smashing my face into pavement. Still fucked my palm up pretty bad. I quickly got up and speed walked to the movie theatre. While it wasn't my gout that caused the event explicitly, it had been my inactivity and weakness, which was in part caused by my gout, that did it.
People need to be more aware that arthritis, gout included, will happen to you in some way shape or form. It is, unfortunately, one of those things that will creep up on you. Eat better, move more, stretch, and stay active as long as you can, because one day you won't be able to.
As for sharing, I do. I tend to joke more about it now than anything, but the conversation usually moves into a conversation about arthritis so there's usually a good that comes out of it.
Oh, I guess worth noting, I was diagnosed with gout in November 2012, though I had been experiencing symptoms all throughout 2012, as well on and off symptoms over the previous few years to 2009 when I had my first symptoms, not knowing what they were. I thought I had sprained my finger somehow, but looking back, it's the exact issue I get in my hands now when I have a flair up, and it can last months.
My grandmother just had an extreme case of gout that left her lower body paralyzed from pain. And what made it worse was that she was originally misdiagnosed so her health got really bad for a while. She just got out of rehab and needs to focus on exercising because otherwise she will have to give up her ability to walk.
I'm sorry to hear, Akir :( I hope she is able to get better, and get moving around again!
I am a stroke survivor. It comes with so many wonderful side benefits, like hypertension!
It doesn't impact my day to day except in one very crucial way: the ever present pins and needles make it so hard to sleep. You know that feeling you get when your foot is "waking up"? That's my left side, all the time (moreso my left hand and leg, though.)
What I would like people to know is not every stroke leaves you looking like a wax statue left in the sun. If you looked at me, you couldn't tell I had a stroke, yet it's unpleasant to walk long distances or to climb too many stairs.
It's not something I broadcast, but it's also something I mention when it fits the topic. Like now.
When I was a senior in high school, I had a random, isolated seizure in my biology class. Cause unknown. No other seizures in 10+ years since. No idea if it will happen randomly again.
Every month or two, I will start to feel dizzy and like I'm about to faint. My vision rotates clockwise and my hearing becomes muffled. Then, the dizziness goes away and my hearing transitions to a faint hiss in one of my ears while the other is cleared up. This whole episode lasts 3-5 minutes and seems random in what I am doing to trigger it. I scheduled an appointment with an ENT who said he couldn't diagnose or do anything about it since it is so sporadic and random. That 5 minute appointment cost me $300 out of pocket after insurance (yay $2000+ deductible).
My big toes sometimes go numb when I am running. Has been that way for my teens and adulthood.
I have hemorrhoids. The last time I had a flare up, I was prescribed a suppository to alleviate the issues. I ended up not picking up the prescription because it cost $600 for a 14 day supply. I now just sit in sitz baths each flare up throughout the day.
I lost tooth #17 in college. I didn't have dental insurance and I had a failed root canal and suffered through years of random periods with an abscess developed in the tooth. Now, I have to decide whether to spend $2000 on a dental implant (with dental insurance) or get tooth #16 pulled.
I must have stubbed my left pinky toe or my new running shoes suck because I have a splintering, hot pain when abducting my toes. I hope this goes away.
I have ADHD but my partner abused stimulants in the past, and I have high risk for stimulant abuse, so I can't try the "good" medication. I tried Strattera but couldn't always eat with my medication at the same time everyday. Plus, I smoke a small amount of pot at the end of the day most days, so I am not setting my self up for success anyways. I constantly forget to lock doors. Today, I forgot to blow out a candle on my way out the door. I often struggle staying on task at work. When I smoke, I often get a burst of energy and focus to clean, workout, and take care of myself better. So I struggle with the idea of quitting, especially because I don't drink alcohol so I feel I am missing some sort of "release" after a long day.
I'm writing this as I'm doing my cooldown walk back to my house. Give exercise a shot. I always thought I would hate running, but part of me always wanted to give it a shot. After I watched this video on running form I decided to give the couch to 5k program a shot. I've been running for six years now. I was 31 and 255 pounds when I started.
All that is to say that if I can do it I think anyone can. If it's not fun then you're going too fast - running doesn't mean speed, it's the form.
What I've found, being also ADHD, is that running gives me some quiet time, gives my body an outlet for me anxious energy, and I think the endorphine kick helps my brain to focus. The two best places for thinking for me are on runs and in the shower.
I'd highly recommend the paid couch to 5k app. It's three dollars. Get any pair of running shoes, some shorts and a t-shirt, and go start the couch to 5k program. Go get that runner's high.
I've actually been working out for nearly six months now. Long distance running twice a week along with strength training and yoga. I run around 15-20 miles per week. That anecdote about leaving a candle burning while I left was in a small part caused by me misplacing my running headphones and spending 15 minutes trying to locate them for a run I was heading out the door on. They ended up being in a linen closet, sitting on a shelf, and I had no recollection of doing that. I'm very inattentive and forgetful and I lack executive functioning for things like planning. Sadly, running and exercise hasn't helped too much.
To be honest, I would probably do well to meditate and disconnect myself more from online things that abuse the short-term feel good neural pathways in my brain. If I quit reddit and games like Overwatch, I could probably rebuild my focus.
Restless legs. Had them on and off since a teenager. Really can make sleeping difficult. Sometimes stretching and heat helps, sometimes not.
It's so minor on its own, but I'm also bipolar and prone to get manic when sleep deprived. Leads to psychosis if left untreated. I've been involentarily committed to a psych ward multiple times, always peeing clean on a drug test despite horrid psychosis.
Bilateral carpal tunnel and other RSIs. My arms are basically dead weights by the end of every day.
What's a hidden health issue you have to manage?
Irritable Bowel Syndrome
What is it like for you?
Honestly, depends on the day or week. Some days go great, others are shitty. Right now, it's alright and manageable.
My main issues are constipation and rebound diarrhea. I forget the medical term, but my bowels also like to fire the "gotta go!" alarms when there isn't a need, or they tell me "I'm not empty!" when they are indeed empty. Thankfully, medication does help with this.
One honest blessing from the changes covid brought to the world is the acceptance of working from home. Thanks to this, I haven't had to deal with a shared restrooms or cheap toilet paper in a year and a half, and honestly been one of the best things.
How does it affect your life?
The issues slowly built up and ruined my life. I found myself avoiding going out to restaurants or family gatherings to avoid needing a public restroom. I used to spend a lot of time in the restroom as well. If I did go out, it was a struggle to convince myself I was safe to go, then I'd go out and rush straight home.
I had always attributed my issues to stress from school (end of high school through college). After graduating college and realizing that the new stress-free lifestyle wasn't helping it clear up, I sought treatment. (I sometimes laugh to myself that my graduation gift was my first colonoscopy!) It forced me to completely reevaluate my lifestyle and diet.
After working with my gastroenterologist, my symptoms are generally under control. For my diet, I avoid as much dairy as possible (harder than you'd think!), drink lots of water, and try to eat healthier overall. For medications and supplements, I drink a glass of Metamucil every evening, take a magnesium supplement, and take 50mg of an antidepressant which helps with my bowels firing false alarms.
One other way it affects my life is the social side. If I have plans with friends or family at the end of the week, I usually stick to a handful of "safe" meals for a few days before. It's repetitive and boring at times, but it works for me. Learning to deal with people's reactions when I'm picky about my food or decline meals or dishes at family events or at work (pre-covid) has definitely been an interesting course to navigate.
What do you want other people to understand about it?
IBS is such a broad description for so many less-understood bowel issues that affect a lot of people. My gastroenterologist always says more people deal with bowel issues thank you'd think. We just don't walk up to each other and say "hey, I've got diarrhea today."
Talking about your bowel issues and poop to your doctor is worth every ounce of embarrassment to start working towards control and understanding. Honestly, making that first appointment and being very honest about how often you are constipated or have diarrhea is very tough, but is worth the embarrassment to get your life back on track.
Do you share this with other people? Why or why not?
I have to my immediate family, a couple friends, and a few trusted people at various jobs. Aside from that, I generally don't. In the odd times it's actually come up, it's opened my eyes to how many people deal with bowel issues and just how varied IBS symptoms can be.
What's a hidden health issue you have to manage?
ADHD. It's not so much that it's "hidden", but that the disorder entails much more than just being a hyper kid.
What is it like for you?
Frustrating.
How does it affect your life?
As a kid in grade school, it was inattentiveness, misbehaving, and forgetfulness. As an adult it's morphed into procrastination, anxiety, bouts of depression, and lack of motivation.
What do you want other people to understand about it?
It's much more than being hyper, lazy, or stupid. Here's a short video about it.
I have ADD, the forgetfulness and inattentiveness really gets to me. I had a nickname as a young guy in my first job, The Distractatron. I'd get distracted from my job, get sidetracked then I would distract others from their work.
What's a hidden health issue you have to manage?
ADD.
What is it like for you?
Frustrating, can be embarrassing due to a lack of absorbing what I have read or been told and it appears that I ask rather dumb/obvious questions. I'm easily overwhelmed mentally with things if they start getting a little complicated (though I am far from a dense individual). I struggle to read written instructions.
I have attempted to get assistance from Adult Mental Health (I live in NZ) and have been denied any assistance because I have no history as a child (ADD was almost like a taboo thing I felt back when I was a kid, I'm in my 40's now, I felt like I couldn't talk about this without being told that a) I am being silly or b) get over it) and I have no issues with drugs or alcohol. That frustrates me more than anything else.
How does it affect your life?
I've sort of learnt to live with ADD, apart from being mentally tired after work it generally doesn't affect me too much. It is when I am busy at work that it starts to affect me. I also have a tendency to sometimes react quite strongly when a reaction of that nature isn't required.
What do you want other people to understand about it?
This doesn't bother me, if people aren't empathetic to take the time to understand how my brain ticks then they aren't someone I want to associate with.
Do you share this with other people? Why or why not?
Only when I really have to. I've opened up to a couple of people at work (managers above me) just to try and get them to understand. Generally I get the impression they think I am full of shit or making excuses.
Either way it's not something I generally discuss outside of my immediate family.