Hi @Adge, @Wanderer, @Faith-and-Hope, anyone coming to this thread after me,
As some know, I have lived with Crohns Disease since I was 18 (now 56), as well as Bipolar 1 (only diagnosed much later, though I had been living with it for most if not all of my life). My younger years were a lot worse with these things, especially my 20s, when the Crohns was very active and I had not yet received diagnosis or treatment for my mental illness. I was very bewildered and vulnerable at that time, with so little understanding or even acknowledgement from anyone of what I was going through.
I find that physical illness and mental illness are closely linked, and can create a kind of feedback loop that can seem hard to escape, one feeding the other in a sometimes escalating way. For me this has made the experience of both so much worse, especially as a young woman, when I had very little experience or skills to deal with these things, and was much more dependent on doctors to take a very dominant role in deciding how things went with me.
I have found over time that doctors have often had little understanding of this interwoven dynamic. For example, gastroenterologists consistently ignored or thought little of my early complaints of depression, stress and anxiety, not seeming to realise at all that my physical illness might be causing or excacerbating mental ill health, and vice versa. One of them (a woman) once rudely told me that if I had a child I wouldn't have time to be depressed! As an inpatient in hospital, medical staff have often seemed completely ill-equipped to deal with mental health problems in that context. This has led to me checking myself out of hospital twice during high anxiety/panic attacks in there. On one occasion this took place a day and half after surgery. On the other occasion this occurred at 4am. I had no-one to collect me and was just left to wander out alone on to the night street in that sick and highly stressed condition, where I had to use a phone box to ring a taxi. It seemed the main thing on both occasions was to have me sign the paperwork, relieving the hospital of any responsibility.
Similarly, most psychiatrists I have seen over time have behaved as though physical illness was irrelevant to my mental condition (luckily I have a good one now who does understand the connection). Especially as a young woman, I had many experiences that were the very opposite of helpful.
I agree with the comment that taking a proactive stance in our physical and mental health treatments, and being as informed as possible, is highly desirable. Some doctors seem to hate it when patients consult 'Dr Google' about their health issues. Phooey to that! These days I seek out relationships with doctors that are more 'collaborative' than 'compliant', and have been lucky to find some now who will work with me like that, but it's taken decades.
Having said that, I am still yet to find a gastroenterologist who I find very helpful beyond the strict basics of medical/technical necessities, and I've consistently found them to be seemingly quite lacking in compassion. Not saying they are all like this, just that I've experienced a similar thing with so many of them. Because of this, and the trauma of my earlier experiences, I do not currently have a gastroenterologist treating me at all. This is despite having a chronic physical illness with no cure, that needs following up even when in remission. I'd better not get started about the idea of remission in Crohns Disease. I have had diarrhea pretty much every day of my life since I was 18, despite the fact that I am now officially in remission.
Having written all this, I realise that I haven't really answered your queries, @Adge. I hear and relate to your experiences though and am so sorry you have had to go through all this, and continue to have to live with it. I believe you are also working, which I find amazing!
I feel I have been really too ill to work my whole life, and have broken down out of employment so many times it's not funny, each instance of breakdown becoming harder and harder to recover from. The longest I've managed full-time employment was nine months when I was 17. Since then I have had possibly 50 jobs (including freelance gigs at times). Realising at a young age that I couldn't manage full-time work, most of my jobs have been casual, part-time or temporary. Even there I have struggled enormously and broken down again and again. In between I have been on the equivalent of Newstart with medical exemptions. Needless to say I have lived in often desperate poverty all my life too (which again doesn't in any way help physical or mental health). I've been close to homeless on two occasions. I have the disability pension now, since 2010, which makes life so much more bearable and viable. But it's taken a very long time to get to this better place.
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