I often look back on how everything went from so good to when it all went down hill and how I wish I had been told what life was going to be!
I wish I was told that having one condition of the autoimmune nature would mean that there was a good chance it wasn’t going to just stop there, maybe then I could of been more mentally prepared! I wish I was told not to push myself on my good days or it would take anywhere up to a week of hell to get back to my normal hell rather than having to learn the hard way and had been given tips on how to stop myself from pushing myself as it’s so easy to do.
I wish I was given the option of treatment or told who specialises in my conditions not just left to deal with it on my own and not have any of it all explained. I wish I was told how bad it can get on bad days and how to manage. It’s only through my own research and the words of others I’ve learnt advice on what to do during a flare, things I wish I had known from the start!
I wish I was listened too, believed and made to feel that everything will be okay! I wish I was shown compassion and empathy instead of judgement.
I wish I was told that outsiders would judge me as I look well but am far from it so I could prepare to deal with the stigma “that I do nothing all day when I should be working” and given the advice that a councillor would be of great help in dealing with the diagnosis and the mental exhaustion that comes with it.
I wish I was told that my mind would become a maze as I live each day alone with my thoughts, and how to overcome living inside my head!
I wish my doctors made sure I was prepared for the financial burden being unwell would put upon us. That there would be many costs for ongoing scans, regular specialist appointments (that cost an arm and leg), medications, walking aids and devices to help with everyday life!
I wish I was told to prepare financially as I wouldn’t be able to work or drive if/when things got worse and how to prepare myself mentally when feeling like a financial burden on my husband (although he assures me I’m not, it’s how I feel inside). I wish I was prepared for my independence to be taken away without choice!
And I just wish I knew what life would be like, I wish I savoured every moment before becoming ill more, before it was taken away so suddenly!
Doctors seem to just diagnose and expect us to know what will come or do the research ourselves (which then they ridicule us for) or think that due to the symptoms we first have we know how life will be already! Most illnesses generally progress from how they began at the start! I know mine has especially more so since having new symptoms and then new conditions. No one states, “watch out for….. as these are symptoms of conditions that may happen due to having……” we aren’t warned things will get worse before they get better (if they get better)
No one asks about the mental health of people living with chronic illnesses and daily pain! Why? Don’t we need it most? Most are too shamed to speak up, it should be regularly offered!
Doctors need to take their time, explain conditions upon diagnosis, explain what is to come or what could come up/warning signs for other pre disposed conditions, how to deal with it, who to turn to, and give support throughout!
Our medical world needs an upgrade! It needs compassion and it needs understanding!