Eternal hot flashes (adrenal insufficiency): What helps?

Your observation on human behavior is so true. If there is a crisis of perhaps someone needing surgery... that is a 'short term' crisis; friends rally very well to help during these crisis, knowing (at least expecting) Life will soon return to "normal".
I reflect on my own response when I was "a normal"; did I respond and assist in the way that showed understanding to someone with longterm disabilities or chronic demands? I was a nurse, so did know 'how', but did I or could I have grasped the whole impact of how chronic disease utterly and completely alters, changes, stands life on its ear?... No!...
......how can they?
Of course, we lean on those who, we may think, are with us in life's struggles, but that can turn to dust, in tragic ways, and at a time when we need support the most. This is the Downside' of human nature. If we, ourselves could walk away from this journey, wouldn't we? 'Others' have the option !
It is our job to carefully consider who we 'tell all ' to. And, to re-think our expectations of others.
This is OUR journey after all.
Now that I am an 'old ewe' I simply do not tell my closest supporters 'all things'. If/when they ask, I respond according to their 'grasp quotient'.... is this a question based on politeness? - then this requires a polite answer. If it is a more private time between friends, then this maybe a time to 'spill'.
But, most people, I have found, are not in the least medical! And therefore have no clue what you may be saying! (I am amazed at how little folks, in general, know of their own bodies!) So answers have to be tailored in ways that they will understand, without overloading!
It is a reality that as illness continues, and then begins to worsen over time, that 'friends' fade. This makes sense.... I do not belong in their world.
The friends - true friends - that will stay the course, who can listen, assist, and at times, give you that needed 'kick in the pants' are few and far between - I can count them on one hand. These are my Gem People- and i am so grateful to have these people in my life ... they choose to be in my life! with all its misery. BUT, they need to be cared for too... and that's our job!
Every question is an opportunity to 'teach', but I must also 'weigh up' against - what do they want/able to hear?' .. and most of all do not over burden them with what is my problem/ journey - both, with the listening and with the physical jobs I need done.
How do you balance that.. well, we need the wisdom of Solomon!
The journey of chronic illness is a personal one. One that belongs only to us... it is me who walks this road Finding the right supports and supporters is vital to our physical and - more importantly - our mental health and well-being, even in the deepest times. 💔
Finding those who truly 'know' and who are able to understand, and still care through it all, is so important..... that's why this 'Connect' is so wonderful. You are talking to folks who do 'know' in the core of our being!
We can supply those vital bits of knowledge with complete understanding of our battle and cheer one another on! Plus, give us up-to-date, solid, reliable medical information that is so foundational to us!
Your comment, " chronic disease is a debilitating disease of the psyche" is so true -- it's vital to keep our 'foundation' intact ! Getting therapy from time to time is a great idea, when we need that help on clarifying our situation - easing the burden. Your medical people should have good referrals to suggest! Face-to-face is the best. I have found group therapy to be so helpful.
Sending you my sincere hope that you will surround yourself with all the love, care and support you
need!

Christine, I have never heard everything I feel put into words so perfectly as you just did. Especially, the "I don't belong in this world" part. I've been on this very unwanted journey since 1994. I'd never been sick, other than gynecological problems and migraines, til then. It all started with fatigue, skin problems and pain. Now, many doctors, therapists, specialists, tests and surgeries later, I'm no further ahead than I was back in 1994. Except, looking and sounding more crazy and seeming like a hypochondriac. I've only been with my"newest" doctor since June, and I'm already getting those "I wish I'd never seen you" vibes from her. I'm so very tired of all of this.

Oh Brenny!
I am so sorry ... I, and I'm sure, most of the folks on this site know exactly what you are feeling and talking about.
IT IS NOT YOU! Its not even the doctors... really... it is simply that a lot of our symptom presentations were not in their medical books, yet!
Thankfully, there is research all the time. I know from my journey, since 1974, there has been so much discovered, new diagnosis, new types of bloodwork, genetic studies, medications, diagnostic tools, treatments... but there is so much that remains unknown. From 1974 until, 2004, they just did not know what was going on with me.... I was given many titles! and yes, all of the nasty, insulting comments from doctors and 'friends' to boot; but .... you know there is something wrong.
There are many suggestions on this site for 'how to live despite it all'. If I lived in the U.S., I would be going to the Mayo Clinic. Don't be afraid to get someone to talk to during these dark days... I did, it was comforting to know that someone would listen and be understanding in this struggle -- no answers, but the support was great! They may even help you 'plot your course' in going forward.
I assume you have a dermatologist or a rheumatologist? Autoimmune problems come in so many disguises. Even with or without a diagnosis, finding the comfort measures that help you are very important.
Yes, we may not 'belong in this world', but we belong in ours!! There are so many of us who will understand this difficult and seemingly endless journey we are on.
We are the "Connect Buddies".
All the best to you Brenny! The fight is real!

Christine, I have never heard everything I feel put into words so perfectly as you just did. Especially, the "I don't belong in this world" part. I've been on this very unwanted journey since 1994. I'd never been sick, other than gynecological problems and migraines, til then. It all started with fatigue, skin problems and pain. Now, many doctors, therapists, specialists, tests and surgeries later, I'm no further ahead than I was back in 1994. Except, looking and sounding more crazy and seeming like a hypochondriac. I've only been with my"newest" doctor since June, and I'm already getting those "I wish I'd never seen you" vibes from her. I'm so very tired of all of this.

I have been dealing with Addison disease for 3 years. The symptoms are really debilitating. Weakness, dizziness, diarrhea, nausea and any change in the weather barometer drive me crazy with panic attacks. Sometimes even my love ones don't believe me.