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Which Disease/Condition Is The Hardest To Live With?

Ladies and gents please stay on topic and could you please just pm each other for personal messages. Thanks!
 
fucking hardcore anxiety and panic disorder. it manifests itself physically in crazy and confusing ways, alters your reality, makes you feel like you've lost your mind, and your'e unable to function in normal situations. it literally takes your life away.

Okay, I realize its probably not THE hardest to live with, I just had to vent. HIV, Chron's, etc would be much more debilitating. I just wanted to throw psychiatric shit like acute anxiety out there because in my opinion, that shit can get right up there if not WORSE than a physical ailment.
 
Prader-willi syndrome is one of the hardest. It makes people hungry, 24/7 and does not respond to appetite suppressants. So unless sufferers have no access to food, they keep eating.
 
I must say, as someone who is 25, fresh out of college and therefore essentially broke in terms of being able to fund myself medically, and has recently been diagnosed with HIV- it is truly SHOCKING how manageable the illness is. The interesting fact is when I heard the nurse mutter my diagnosis, I literally thought it was a death sentence, or that it would cost hundreds of thousands to keep me alive, and that the rest of my (maybe short) life would be a complete burden. The TRUTH (100% truth) is that there is now SO much funding nowadays that it's practically free of charge to take medication, it requires swallowing 2 small pills a day, and my life expectancy is normal- if not longer since I'm watched like a hawk now by my (Stanford Medical School grad) doctor. I usually take my pills while distracted (reading, watching tv) to take my mind off the fact I'm taking something so dire. Now, there are definitely other considerations to take- like I can't take antacid within 6 hours of my pill (and I like spicy food), and I must exercise daily and eat properly; but this is all petty in the large scheme of what has been a gift of new life. My perspective on existence has done a 180- I'm 100 times for empathetic towards others, since in reality you can't tell I have this virus by looking at me, but I'm facing something so drastic- which makes me believe everyone has something drastic or debilitating they're dealing with; which strengthens my bond with humanity...and I have, at such a young age, faced my own mortality. I am absolutely not saying that it's "good" to have the illness, but if you can maintain a good attitude, then you really will be just fine. Thus far I've had no negative reactions to the medicine, and it seems like life will be just the same. The negative factors associated now are all facets of stigma. Who will love me? Will I be ostracized? What if one day the medicine fails? It's the unknowns that are definitely the worst part- however having a genius doctor and a couple (free of charge) case managers have made all these thoughts quell. It's so very interesting to have this illness- I feel like a guinea pig sometimes, but I know for sure that I'm in good care. All in all, I would not call this a top 10 worst disease; however I do wish the general public would be more educated about it. I also don't want to be sensitive, either. There are people who are not as fortunate as I to have access to these helpful folks; and their prognosis may be more cynical- but if you are in the right demographic, as I'm sure everyone here with a smartphone to view this webpage is in the first place, then you too would be ok.
 
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Dealing with two elderly parents with dementia / altzheimer's. It's much worse than you think it's going to be.
 
I have a disease called thalassemia. I need to get blood transfusions every 4 weeks and I have to take meds every night.
 
Wow... 4 years later and I'm literally dying a slow death from Inflammatory Bowel Disease, just not the Crohn's version, but very similar. It's weird to look back at my older post, when my serious condition wasn't happening yet... or at least not on my radar yet. If only that guy knew what awaited him, heh

My opinion now would be that it's suffering and pain themselves that are hard to live with. The diseases are just different forms of terrible suffering. I wouldn't want to trade having IBD for any of the others on the list. When your body isn't working and your entire life is disrupted; and when the physical and psychological pain are constant, there's really no equivocating. It's just fucking hell.
 
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