People Share Personal Information About Their Medical Conditions

People Share Personal Information About Their Medical Conditions


Feeling overwhelmed? Feeling alone? A medical condition can make life feel like an uphill battle.

But there's a way to cut through those feelings of isolation: Conversation! Redditor kevwuk got the proverbial ball rolling with the following question:
What weird/rare medical conditions do you have?
Sounds depressing, perhaps. Nah––I'll raise a glass and say cathartic. (Speaking as an American, it's totally understandable why people would jump at the opportunity to tell us how they feel when we live in a society where medical insurance can feel like a luxury and people shy away from visiting doctors and hospitals to avoid enormous bills.)
Medical Credit: Source

People shared––and it must have felt like sweet relief. Read on! MEDICAL CONDITION #1:
Ehlers Danlos syndrome, hyper mobility type. Most people think it's just being a bit bendy, but no, it's actually a treasure trove of annoying shit. Passing out, joint injuries, muscle injuries, bad circulation, digestive problems, shitting blood, painful feet, slow healing, fuzzy vision, excessive tiredness, and resistance to local anesthetic are all apparently unconnected things which can be caused by this slight collagen defect. Fucked up thing is I thought most people dealt with all this and just got on with it until I was 21. It's still hugely irritating to live with but it helps actually getting treatment through physio, bracing and pain relief instead of just being dismissed because I don't have stretchy skin. There are types of EDS other than classical!
Amusia. I've never been able to keep a beat, hum notes properly, or even feel emotions from instrumental music. AMA. I still listen to music, but it's not so much a thing of beauty that it seem to be for so many people. I feel like I'm missing out on a big part of the human experience, like the whole world is brought to tears looking at a painting and all I see is a blank canvas. Mind you. If you never had a sense of taste, for instance, you wouldn't really be so sad about not having delicious food. Aside from jealousy in how much people seem to enjoy it... It's just how life has always been. My favourite band though is the Gorillaz. The one thing I do get from music is that it can be relaxing, so I at least feel that. And nothing's more relaxing than Tomorrow Comes Today. I do enjoy shitty pop though because it's simple. The simpler the better. Listening to Jazz or heavy metal music is like... For you... To be listening to three different songs at the same time. Also I have a hard time detecting layers if that helps you understand. I can't tell all the instruments being used for example.
Medical Credit: Source

Pericardial cyst. I have a 10cm cyst on the sack around my heart. I think it's something like 1:100,000 people have one? I had horrible anxiety for years and finally had a couple of panic attacks that made me pass out, my husband took me to the hospital and they "found something on the x-ray". They wanted to do surgery, but it involved cracking open my sternum. When they told me it wasn't really dangerous and anxiety was the major thing I had to deal with I decided to just live with it. Knowing it's there has actually cured my social anxiety, now I just tell myself it's my my heart hanger on and I...don't care anymore. The worst bit is that it's on the left side of my heart and that's the side I like to sleep on. Sometimes I am falling asleep and get heart thumping anxiety, but I just need to adjust my pillows to give a bit more space.
Interstitial Cystitis (IC). My bladder just decided to start hating me one day. No known cause, no cure. It basically feels like I have a bladder infection if I don't follow a strict diet and strict lifestyle rules, and besides pain meds, there really isn't shit I can do about it. Sometimes even when I follow the diet and lifestyle changes I get pain. "Oh, there was soy in that? Enjoy peeing out lava tomorrow. You're wearing pants that are a little too tight? Have fun trying to give a speech in class when it feels like someone is holding a flamethrower on your crotch.... Your hormones are doing exactly what they're supposed to? BLADDER PUNCH!!! You have to pee immediately even though you just went 5 seconds ago." And I'll have it for the rest of my life. Good times.
I have a skin condition called keratosis pilaris - I don't think it's too uncommon, but most people don't know about it. It basically just causes lots of tiny raised specks all over your body, and it's harmless. When I was a kid I thought it was so ugly and the worst thing ever and would ruin my it turns out, I don't even think about it anymore. I don't know if mental health conditions are really what you're looking for, but I also have cyclothymia and very occasional psychotic symptoms. It was absolutely nightmarish when I was younger, and hallucinations still massively freak me out when they happen, but now that I'm on appropriate medication I'm mostly doing ok!
Medical Credit: Source
I was diagnosed with derealization/depersonalization disorder about a month ago, but I've had it for a few years. In my case (and in many cases) it led to anxiety and depression. It's commonly (in my case as well) coupled with visual snow, which is a constant "static" in my vision.... Used to be an occasional thing - I'd have it for a day or two and it'd go away, but it's been going on for two years straight now so who knows if it'll ever go away. I have been prescribed SSRIs to deal with the depression/anxiety that's either a result or a cause of the DPDR. Derealization is a feeling of "dreaminess", like everything around you isn't real - it's hazy, sometimes almost distorted, unbelievable... basically it feels like you're dreaming. Depersonalization is a feeling that you aren't real. It's like watching myself talk in third person, watching my thoughts go by, watching myself do things. It feels like I'm disconnected, and I'm an observer of myself. It's not like I believe I'm not real or the things around me aren't real - I legitimately experience them in an unreal way. It's incredibly hard to explain unless you actually experience it, but it's pretty terrifying. Also no treatment for it, but the resulting anxiety and depression can be treated so that's OK. Not sure how rare exactly it is, or if it's the kind of medical condition that's even really that interesting but I thought I'd share.
Earlier this year I was diagnosed with Idiopathic Subglottic Stenosis. That means: for no known reason, excess tissue grows in my trachea (windpipe) affecting my breathing. I went for a few years being treated for "asthma", with no improvement. I was having shortness of breath that kept getting worse, to the point of noisy wheezing. My lung doctor finally sent me to an ENT, where this March they did a scope and found my airway was 80% closed. I was admitted right away for surgery. What they do is use a balloon to dilate the airway open, and often use laser as well. Unfortunately, in most cases the stenosis keeps growing back. Mine has been aggressive and next week I'm having my fifth dilation surgery. It's been emotionally, physically and financially draining. A more intense surgical option exists, but the recovery is long and rough and there is no guarantee of it being a cure. A tracheostomy is possible. It is a rare disease, 1 person in 200,000 have it, with 90% being women.
Sideroblastic Anemia. My body doesn't properly use the iron it absorbs to make hemoglobin for red blood cells. So far I've been lucky and only experienced a lot of fatigue from it. Eventually it could damage multiple organs or cause me to develop cancer. I only found out I had it when my dad died from it, it can be hereditary. If it gets bad enough, the only cure is a bone marrow transplant.
For one thing, I have chronic primary stabbing headaches, better known as ice pick headaches. They're... pretty much what they sound like. Localized headaches that literally feel like someone's driving an ice pick into your head. They only last ~20 seconds, but come in clusters and can be a real problem when driving and stuff. I also have something that I'm going to assume is pretty rare, since the specialists I've seen are all mystified and I don't know anyone else with the same symptoms. Basically, I'll occasionally get my period for 3+ months at a time, complete with uber-PMS (which for me, includes depression - yay). I'll also deal with bouts of extreme exhaustion, to the point where I need a 3-hour nap from a trip to the grocery store. Blood work and ultrasounds are all utterly normal, so it's probably not PCOS or endo.
My two-for are 1.) Ketosis-prone Type II Diabetes and 2.) Ménière's Disease. 1.) I can (and have) go into ketoacidosis when extremely dehydrated and/or randomly through infection. My body doesn't react well to any insulin not my own, unless it's larger than usual dosages. So, we still have to use my regular meds to bring my glucose under control in these situations. 2.) Ménière's isn't particularly rare, but the fact that I have it in both ears is. I was diagnosed after a TBI in 1997. I suffer through daily bouts of tinnitus. Limiting my sodium intake has kept me from having too many bouts of vertigo (about once every 3 or 4 years, now.) I'm down to 60% hearing in my right ear, and 40-ish% in my left. My tinnitus/vertigo attacks are usually the worse when low-pressure weather systems move through, like we're expecting tomorrow. The rest of the menagerie: PCOD, non-specific IBS (with one symptom shy of being Chron's), fibromyalgia, peripheral diabetic neuralgia (feet/shins), and sporadic aphasia (also brought on by the accident in 97.)
  H/T: Ask Reddit

Have your say