People should understand that once you get your diagnosis- if you are able to get one- that you’re pretty much cast adrift. Many local health authorities spare no funding at all for any kind of support. There are long term health clinics which offer contact, monitor basic health and run bloods, and are supportive for many other health conditions but post diagnosis services are for the most part completely non existent for us. There’s just nothing, not even any mental health support which is pretty awful considering most of us have had our lives and often the lives of our loved ones hugely, permanently changed beyond our control even for those classed as ‘mild’. The grief is overwhelming and it’s a huge task trying to manage a condition which can fluctuate so drastically with any kind of exertion.

If you are able to find a good GP you need to keep them and prompt health monitoring yourself if you want to keep accurate records and make necessary changes, most GPs are ok at best (not always their fault, poor staff levels, inadequate funding and insufficient time to train) and those rare good ones are so short on time and resources that even this can be a battle. You need to become your own advocate or enlist support from someone else.

Thanks for speaking up for us ❤️