Hey Pandas! What Medical Condition Do You Have And How Does It Impact Your Life? (Closed)

I have a couple. Most prominent is Ichthyosis Vulgaris. It's gotten a bit better in my adult years.

Some commercials and shows/movies show people just coming out of the shower, dry off, get dressed and go. Anyone with this skin disorder is in disbelief at this routine. We have to blot dry off, or not even dry off yet, and then slather on creams or lotions.

Baths are not tranquil, relaxing soaks. Baths are taken when I feel like it's time for a soak to loosen the layers of dead, built up skin with a pumice stone, foot file, loofa, anything that works.

To get my feet soft-ish, I need a foot razor, that cheese grater type of file and a foot file. It takes an hour to do each foot.

My face flakes around my nose and eyebrows. Some kids at school created a rumor I did drugs or something. I didn't get why until I saw a movie with a coke sniffing reference. My facials can be intense. I do sometimes use a sugar scrub. Those apricot scrubs do nothing but make my face flakier and bumpy.

I itch and scratch more than I realize, I'm sure. I never feel comfortable in my skin, literally.

When it's been humid out and hot, I get really itchy and my skin bunches up in little rolls as I scratch. I can't help it.

The sun on a dry hot day feels like little pin pricks all over, like I can feel all those ions emitted from the sun shooting into me.

I burn easily, even with a high spf. Tanning looks weird. You can make out all the scales on my legs. It looks blotchy and dirty.

Going to the hair salon is a real treat. Apparently I should try tea tree products.
I'm currently trying to find a hair stylist who's aware and experienced with clients with skin disorders, because none, so far, has really understood that hair care is different than those with normal skin. Skin disorders affect how the hair grows and the condition. The skin on the scalp tends to be the worse and hardest to treat. You can't just slather lotion on your scalp with hair in the way. If I cut it all off, trust me, I would look like Danny DeVito. I think I do okay. I do have to shampoo my hair a bit more frequently. I used to have weekly hair washes but that didn't do anything but make my hair greasy and scalp flaky and oily. Washing with just conditioner.... where do I start with that. Conditioner doesn't rid your head of oils. It adds to it. Dry shampoo.... on very scaly, flaky scalp... not going there. I've tried anti-dandruff shampoos. Once you stop using it the problem is way worse and I was still picking pieces of skin off my scalp.

Moving onto work. There are jobs I'll never be able to do due to skin irritants and soap. Hand sanitizers are hell and for some reason, some places I went to during the pandemic made me take off my non-latex gloves to put their hand sanitizers on my skin and wouldn't allow me to just sanitize my gloves. I told them I cannot do that and if there was place I can just wash my hands with soap and water. Some places had terrible quality hand sanitizers that made me break out in painful, itchy hives right away, and smelled to high heaven. (ok, ok rant over)
Anyways, my province doesn't recognize skin disorders as part of the disabilities rights, so I can basically be fired if anyone has an issue with what my skin looks like or if I can't do a task. The province next over does. No fair.

I have a latex allergy that causes inflammation in my hands.
Ver dry, cold environments make my hands crack and bleed.
I have hyperlinear lines that make my hands look much older than I am, and it's been that way since birth.

PTSD. It is like living under a cold wet and heavy blanket. Being strapped to a chair but there’s an open door. It’s my demon. A quote I like to think about is from doctor strange is “you can’t beat your demons. Only learn to live above them.”

PCOS (polycystic ovarian syndrome). It’s a poorly-named condition that was named for the ovarian cysts it produces, but really has a deeper metabolic cause, via insulin resistance. It can cause weight gain, acne, thinning hair, infertility, irregular periods and depression/anxiety. Left untreated, it can lead to diabetes and certain cancers. Before I was diagnosed, it led to me gaining over 100 lbs, having horrendously long and heavy periods and losing years of my life to depression. I’ve since had a gastric bypass and a hysterectomy and take antidepressants, so I’m managing much better and trying to make up for lost time, living my best life in my 50s!

Polymorphic Light Eruption. Basically I am allergic to the sun. Every spring , summer or holiday to a hot destination, my skin breaks out into a really painful rash that is agonising when pressure is applied. I can’t wear certain clothes, stand up, sit or lie down without being in pain. I can take steroids when it’s really bad but the main ‘treatment’ is exposure so it’s usually not as bad towards the end of the summer. It completely disappears in winter but when spring hits, we start the whole cycle again. Joy!

Spherocytosis. It is an inherited disease that effects the red blood cells. First a short bio lesson… Normally red blood cells are bi-concave disc shaped, from a functioning prospective this has a more effective surface area to volume ratio. Red blood cells have a life expectancy of 3 month and as they approach the end of the third month they lose the bi-concave shape and become spherical. When they become spherical the spleen filters them out of the circulatory system. I have spherocytosis: sphero = round cytosis = cells. When I was 9 I had an anemic event, my hemoglobin dropped to 5.6. The following month, after my body recovered from that event, my spleen was removed. This did not “cure” my genetic disease, but it stopped the excessive removal of my red blood cells. Technically, my round red blood cells are less efficient (remember the my mentioning the surface area to volume ratio). Not having a spleen makes me more vulnerable to some infections.

I have a condition known as cold urticaria. It is basically being allergic to the cold (for me, anything under 50F or 10C). I get a skin reaction of intense pain that can bring me to my knees! If prolonged exposure (over a few minutes) I have broken out in hives and they itch like something fierce! -- No ice cubes for me thanks!

Fibromyalgia, fatigue, fibro fog, sleeping disorders, depression.
It’s hard for people to believe/understand the diffuse pains I feel as they see nothing physically wrong with me. No matter how I try to explain them, there’s always some level of disbelief and lack of empathy.
I’m always tired - no matter how much I rest/sleep, I’m never energetic, I never feel like exercising nor am I enthusiastic about doing anything that requires a lot of physical work. Nevertheless, I sometimes I do, even if it requires a lot of effort. But I always get some judgment, criticism and advice on how to change my “attitude“, even from family members and close friends who know darn well about my problems.
My fatigue is due to my not having a restorative sleeping and being constantly struggling with pain, which exhaust me. It’s not that difficult to understand, but people usually don’t.
My short term memory sucks - I don’t sleep well and I’m medicated with antidepressants. Do I need to say more?
And no, Fibromyalgia is NOT psychosomatic NOR autoimmune, but still it’s not a choice either. And although I am not going to die from it, I will have to live with it.

Hyperacusis and restless leg syndrome. Look them up, explaining would take too long. My ears are always throbbing with pain and I cannot sleep enough for the life of me because if I'm not moving, it's like I have beetles crawling on the inside of my legs. Not fun. That's before I mention the sh*t going on in my head.

I realize most of the people on here are having much worse problems than mine, so I'm going to go ahead and say it: Take care of yourself. Please. You may not be able to control what your body is doing, or the thoughts and emotions which torment your every moment, but whatever it is, your suffering does not make you any less of a person. Please take care of yourself.

PTSD, depression, anxiety, social anxiety. I’m an introvert, however most people I know would say the opposite!
I tend to over compensate

ADHD and Most likely bipolar depression
I forget to take my meds for ADHD all the time and then Im just mess the whole day. And I'll be fine at school but when I get home I'm crying in my bed wishing people weren't calling me F***t

Depression, anxiety, ADHD, bipolar disorder, OCD
it’s a lot and since my mom won’t get me treated they keep building. Trust me guys, this combination of mental illnesses, is NOT fun. i’ve f****d up so many relationships because of this. I’m also absolutely terrified of myself because of my bipolar and i love my little siblings more than anything and i’m terrified i’m going to do something i’ll regret.

I am in Renal failure. Stage 3. Bad enough to need lots of daily meds and feel exhausted all the time but not enough for dialysis.
When you don’t look sick people don’t understand the impact on daily life and it’s really frustrating having to explain why I can’t commit to social functions in 6 months time ! I don’t know how I might feel tomorrow for goodness sake !!!
Also having to apologise for having to explain it because you don’t want to look like you’re feeling sorry for yourself or after attention!!!

So I read most of the other answers and they all sound awful (I’m really sorry to those of you who have to deal with them) but my submission is positive.

I have synesthesia. There are a ton of types, (it basically means when your ‘brain wires’ are crossed and senses combine), but mine makes it so:

1. Every letter I read has a color. It’s the same color every time I read it, with the exception of T, which is dark purple unless paired with an H, in which case it’s Mac ‘n’ Cheese orange. Idk why.

2. Every time someone says a word, I see it in my mind’s eye. In its color.

I learned everything I know from google and have never told anyone about it, but I love my secret colorful world!

I am losing my hearing more and more. My mom is deaf but wears cochlear implants and lip reads so it’s genetic for me to going deaf. It’s tough because I have lost my highest and lowest frequency hearing already. My husband has a very low decibel voice so lots of times he thinks I am ignoring him when really I don’t hear him. I sometimes fake being in a conversation with him and others just so they won’t have to repeat themselves. It’s exhausting. Thanks for letting me share.

Sarcoidosis. Called an “orphan disease” because not enough people get it to make it worthwhile for the pharmaceutical companies and medical researchers to study it to determine how to treat it. Varying degrees of the disease, from light to deadly (think Bernie Mack who died from it). Hard to diagnose without a lymph node biopsy, which I had. Symptoms are joint pain, swelling of lymph nodes, skin eruptions, to granulomas in the lungs. It can affect eyes and other parts of the body. I take pain control meds, antidepressants, nerve meds, and more to keep functioning. Black people have a higher incidences of the disease but no one is sure why, nor does anyone know how you get it. I am not black and in my late 40’s I got the disease. It truly is a pain in the a** to get it. Chemotherapy has been know to send the disease into remission but it is not a guarantee.

PTSD, Anxiety, Depression - and a host of physical conditions all thanks to my six years in the Army. It makes it hard to meet people - or be around groups of more than two...

I have Beta Thalassemia Intermedia, a rare genetic disorder of the blood. It shows in regular blood tests as moderate to severe anemia, but it’s not. It was discovered when I was 21 while in basic training for the Air Force, and only then because the base hematologist had just taken a class on it the month before. The simplest explanation is that I lack the full amount of beta genes needed to produce enough hemoglobin to fully fill up my red blood cells, which is what oxygen bonds with to be carried around my body. It causes my red blood cells to be smaller than usual, to not live as long as they are supposed to before just disintegrating, and later batches of red blood cells are born not completely full so some of them take on weird shapes, like twisty donuts and sickles. A normal woman’s hemoglobin count should be 12-16, mine is usually in the 9’s. To put that into perspective, 8 is usually a mandatory blood transfusion because most people are completely unconscious at that stage.

It’s annoying because my body just doesn’t react to things like it should. Dehydration can land me in the hospital with heart palpitations. I get tired easily, tho I’m so used to it I can most times just push through it. And because my hemo count is naturally so low, I don’t need to lose very much blood before I ‘bleed out’. I had to have a 2 unit blood transfusion and came pretty close to dying after a c-section because the attending surgeon didn’t realize what my condition entailed before the surgery. My count dropped to 6.9 and the surgeon couldn’t understand why I was still talking and functioning. That’s the most frustrating thing about it, it’s rare enough that very few medical field workers know about it. I can’t take iron because my body can’t use it- I’m not lacking iron, just hemoglobin and so it will just accumulate in my liver and kill it. Yet just this past year I got yet another prescription for iron called in to the pharmacy. I’ve been in the emergency room for something unrelated and overheard doctors googling my condition at the nurses station. Kind of wish I’d taken the base hematologist up on her offer to be a case study.

ligma type D
it makes it very hard to play sports (usually pertaining to balls) because i’m very uncoordinated now.
sports used to be life for me, and now it’s death

Lazyitis- I can’t stop laying on the couch and watching my phone.
Jk
Anxiety-
Picture this: your in a pitch black room that’s barely the size of your body and you squished to the point where you can barely breath and there’s no way out. You are stuck there forever- and your family and friends try to get you out but nothing can get you out of that dark tight place

I have POTS, MCAS, EDS, Dysautonomia, and gastroparesis. If you don’t know what these things are I recommend looking them up as the explanations are too long to put here lol😂