It's important not to take the decisions of others personally, if possible. The numbers are: you are very lucky if you have two people left in your life who really love you after about five years of chronic illness. That includes both family and friends. I'd rather celebrate the two people rather than the ones who dropped off.

Some will truly care and worry about you. Most of my family did, even my grandma, which was quite surprising for me.

Friends were quite supportive and called me in numerous occasions. I rejected them systematically and the few times I consented I regretted for the most part. Intuition rarely fails.

Others will take the opportunity and attack instictively to the weak if you are naive enough to try to explain them what you have, but you already knew those probably from were you were healthy.

But none, NONE will really understand except people with the same problem than you. There is a difference between caring about someone and supporting him and knowing how he its really feeling and that his disease its real despite of allopathic shills. We are in a shitty spot, to summarize. Getting away from this as quick as possible its much better than trying to make people understand how much you are suffering.

Yep, all disappeared..impossible to maintain a friendship group when it was based on elements of my life that I cant do anymore...mountain biking, sky diving, parkour and even having a smoke and playing computer games! Without being able to even muster up the energy to go to the cinema or worried that it will spark a HPA spike, I have to avoid everything. Some are angry with me, yet cant see the bigger picture despite explaining it and even sending them articles from the likes of Dr Lam that explain in more educated detail than I can.

Its a lonely trip for some, so I feel for you...I spend my days and nights (as I never sleep) on my own, it gets to the point where I think, what can I actually do about it other than jumping off a mountain (without a parachute this time!)

No, not really. Everyone (most people) think I can do more than I can. Or, have a couple of family members who think the entire illness is in my mind and am making myself ill, at best, or faking it, at the worst. And they barely know me, which is what is so funny. How is it that people that don't know you can make such judgments about you? Granted it's family but i haven't been around them hardly at all in 10 years due to the illness!

I have to deal with people and their judgments all the time and it makes this illness so much worse.

I do have some support, so I'm at least thankful for that.

I am a very positive person, so I always believed I would get better when I just figured out what I was still doing wrong. My hubby needs proof before believing everything is going to be better. So even now, I haven't had an infection for months, and my energy is like I was a kid. I look the best I have this decade, and feel better than ever. However, he still is scared I am going to crash. Now it's just a matter of letting time prove that I am doing wonderful. There's nothing wrong with people just observing to believe:)