scherre

This is an excellent answer. It is awful, of course, that you've been through all of those things but I think it really highlights a big problem in the world at the moment which is that a lot of people assume that people with genuine disabilities and differing needs are asking for help or adjustments out of laziness, spite or a malicious desire to cause more work for others. When your requests are met with that kind of suspicion, and you are made very aware of how inconvenient your disability is to those who are completely able, it's so demoralising.

Do you find this aspect of the conditions hard to manage? That is, the extreme variability in what any one day/week/month might be like, where you can go from feeling energised and like you could run a marathon almost to not being able to move the next day? I have fibromyalgia and it's one of the most difficult things to accept. Just not knowing from day to day what capacity for doing stuff I will have and how much I will hurt from it.

This is right. There is a very difficult balancing act involved in having prescription opioids and learning to use them carefully so that you are able to get some relief sometimes (usually on the '10' days - many of us learn to grit our teeth and soldier on through the 7-9 days which are frequent and which we are well aware that most 'normal' people would be horrified at expecting to carry on through) while trying to avoid the negative impacts both short (e.g. drowsiness, constipation) and long term (e.g. tolerance, toxicity.) Supporting chronic pain patients to help them understand the necessity of this balance and how to make it work for them would certainly be better than just outright saying 'No opioids!' But I also think that general public education would be helpful: people who haven't lived with or had someone close to them live with chronic pain generally think that if you are in pain you just take some pills and then it's all good. They don't understand that it just doesn't work that way when you have a chronic condition - and that leads to a lack of understanding and support in other areas such as employment and education which can have a severe negative impact on people's ability to support themselves and their family. I see the stigmatisation and limitation of opioid medications in much the same way as things like banning abortions or trying to teach abstinence only in order to prevent teenage pregnancies. Both of those things have been proven many times to be ineffective at solving the problems they are supposed to but they keep happening because it's easier to keep current practises in place than it is to build a system that supports the provision of the type of education and resources people need to actually effectively reduce the incidence of these things.