Please please please don't feelt guilty. We know that there are many many conditions which have serious consequences and that in the grand scheme of things our problems are not so high up the list. BUT this is a medical condition, end of, not a made up cosmetic choice, not something you have chosen to do to yourself - its a real genuine condition.
I made myself ill over the years because of all this self nagging,'you should be grateful' you're pathetic for not coping' on and on I went at myself. But saying those words to myself didn't match the way I felt inside and cause me so much hurt. It gave me headaches, a wobbly stomach to be polite, and I turned on myself, thought I was so useless for failing to cope with this, compared to others who have so much more to deal with. It would be 'why can't you cope, what's the matter with you, why are you so useless' believe me over and over and over I told myself this. It simply didn't match the logic and sense versus the gut feelings.
Eventually I got to counselling to deal with all of this, and if you have an opportunity or need it, go to the GP and ask, because it turned my life around.
One of the biggest things said to me, but it took a while to actually believe: "you are allowed to feel what you feel". What, really, you mean its OK to appear miserable when for others their world has caved it, are you sure, but yes very much: Its OK to Feel what you Feel.
I can have compassion for someone else in their situation, I can help and support them, but I can also at the same time feel down about my own problems. That's doesn't make me pathetic, it doesn't make you pathetic or heartless. It makes you a real person. My counsellor said to me, you have a condition, with no known cause, no known cure and the hospital wave you out the door without any info on how to manage that - given all that, why on earth would you think its easy to cope with.
It may sound twisted, but for me it was actually realising I don't have to cope 24/7, its unrealistic, its OK if I cry and get upset. That's not being disrespectful to those with major problems - its being a human being who sometimes finds the going very tough. When I got rid of the self pressure to be this wonderful super human being, to accept bad days happen and its all they are a glitch, a moment - I actualy began to feel a lot better about it all. It took a while but that negative nagger has disappeared.
Having been on the end of how bad this can get with that wretched voice which tells you, you must be coping by now... its a place I wouldn't wish anyone else to go, and you have no need to go there. It took me over 30 years to find my way through, to a place where its easier, not an all embracing I love this kissy kissy best friends, but me and ali-p are not in battle every day. It took so long because there were no forums or help groups or support for me to know otherwise, that it simply didn't have to be that way. So use the forum, pour out the feelings and realise, its OK to be upset by this - I don't think any of us here cope every single minute of every single day - but remember the moments, are just that, a hiccup, not full blown pathetic failure to cope.