Helpful Advice

Everyone with a chronic illness gets it at some time - "helpful" advice, from someone who actually doesn't know anything about the actual illness.

It's hard to know how to respond to this advice. Usually it is well-intentioned, if ill-informed.  Of course, we can't take the advice, but it's hard to explain that without hurting people's feelings.

Some people honestly believe that just because they read something on the internet or see it on a tv, it must really be good. They think it's in our best interests if we try the great new treatment, instead of the regimes our doctors have given us.

So let's look at a few basic facts:

• Those of us with diagnosed health conditions are being treated by doctors, often specialists who have devoted their entire careers to understanding our conditions - if there really was a better treatment out there, they would know about it.
• All medications (including "natural" ones) have side effects. The difference with many of the "natural" therapies is that they have not been clinically tested, and the side effects are not known. The unknowns with these treatments also include - whether they actually work, whether the strength of doses is consistent, what other ingredients have been mixed with them. (Sounds rather like the risks of  using illegal drugs?)
• Other suggestions like relaxation and improving diet might not hurt, but if they were going to fix our health conditions, we wouldn't be sick - the doctors would know, and we'd all know. Why? Because most of us use relaxation to deal with stress, and are careful of our diet anyway. If a number of us actually got better, there would be clinical research done, and whatever the solution was would become a standard treatment.
• Conditions like lupus are life-threatening.  Those of us who have them take our treatment seriously. Interfering with our treatment could have far worse results than leaving us in excruciating pain.