Wishing you a warm welcome to the forum united 
I would say you are one of those here who has had lupus the longest and suffered very seriously from it too, which I am sorry about. It is good for those newly diagnosed to realise that enjoyment of life is still possible after diagnosis even if it is on very different terms from what one had hoped for.
Yes having lupus is very lonely and often isolating even with some good family support. I hope you will find the forum helpful and maybe be able to help others.
I have been diagnosed for about 36 years now but my lupus has been very mild relatively. All the same it affected me more than I would have liked. It vaguely crosses my mind from time to time that if the standard of care and medical knowledge and drugs had been available in those days it would have been controlled far sooner. I don't know if you ever have such thoughts - not that regrets do any good. Acceptance is a large part of the secret of living well with lupus.
Bye for now
Clare
I would say you are one of those here who has had lupus the longest and suffered very seriously from it too, which I am sorry about. It is good for those newly diagnosed to realise that enjoyment of life is still possible after diagnosis even if it is on very different terms from what one had hoped for.
Yes having lupus is very lonely and often isolating even with some good family support. I hope you will find the forum helpful and maybe be able to help others.
I have been diagnosed for about 36 years now but my lupus has been very mild relatively. All the same it affected me more than I would have liked. It vaguely crosses my mind from time to time that if the standard of care and medical knowledge and drugs had been available in those days it would have been controlled far sooner. I don't know if you ever have such thoughts - not that regrets do any good. Acceptance is a large part of the secret of living well with lupus.
Bye for now
Clare