Seven Things the Newly Chronically Ill Should Know

1.  Only a Few People Matter
When you get seriously sick, most people will feel sorry for you, but only a few people will actually try to do anything about it to help you.  You need to try to surround yourself with these people when you're healthy in life as a kind of insurance policy if something goes wrong.  Keep in touch with them when you first get sick.  You don't want to be alone.  You may no longer be healthy enough to care for yourself.  The majority of people will do the bare minimum, if even that.  It's doubly bad if your disease is esoteric and most people don't understand it or have misconceptions about it.

2.  You Must Do Your Own Research
If you know you are seriously ill, and yet your initial doctors' visits are unfruitful, you must research on your own.  You are not crazy (unless you actually are crazy).  If something hurts, it probably hurts for a reason.  If something is not functioning normally, it's probably not functioning normally for a reason.  You need to at least figure out the general area that's wrong so that you can get to the right kind of specialist.  Do not rely on your doctors if they have no answers for you.  And even the best doctor may not have read every article about your specific condition.  Make sure to read reputable sources.  Google Scholar is your friend.  Most medical journal articles are perfectly comprehensible by someone with even a high school biology education.  Don't believe everything you read.  Other than journal articles, connecting with other people who have (or had) the illness is probably your best other source of information.

3.  Go Straight to the Best
There's no point in wasting time with so-so doctors.  Sure, when you're desperate and can't wait for an appointment do so.  But also make the appointment with the best from the get-go.  You will probably have to wait to be seen anyway.  A university hospital or academic center is more likely to have innovative treatments and more likely to get the diagnosis right the first time.

4.  Great Health Insurance is Critical
It's completely worth picking one job over another just because it has better health coverage.  Do it when you're healthy, so you have it when you're sick.  This may sound like an extremely unfortunate way to base your life decisions when you're healthy since the chance that you get sick is slim.  But even young people who are in great shape, do suddenly come down with bizarre illness.  Unfortunately there is little safety net in place for them if they don't have good health insurance.  The government will NOT take care of you.  Do your best to keep your health coverage when you get sick.

5.  Accept Help from Everyone that Offers
It's fine when you have the flu to tough it out.  But, when things are more serious, don't be afraid to accept help.  Yes, you are a burden.  But, yes, you need the help now.  The more help you get, the more likely you are to be strong enough to recover and some day return the favor.

6.  Keep Believing that you Will Get Better
It's almost a cliche that those that give up hope who are ill, soon lose the battle.  Yet, it seems to happen in reality.  Those who are more optimistic seem to do better.  Maybe a certain level of denial is actually helpful.  Or, maybe there is a mind-over-matter side to healing.  Either way, it certainly won't hurt you to be optimistic.  It may however hurt you to be pessimistic.  You don't need a psychological problem like depression on top of your disease.  You have a right to be depressed.  You have a right to feel sorry for yourself to a certain degree.  It is natural to be jealous of those without your condition.  Just don't be that way all the time!  Be as optimistic as you can be.  It's the 21st century and even if your condition can't be cured now, it probably will be curable in the future.  Don't stop believing.

7.  People Who Help Themselves Get the Most Help
If you're doing everything you can for your condition, you are more likely to be respected by your doctors, your family, and your friends.  This may mean diet, exercise, physical therapy, supplements, medication, scheduling, and research.  Maybe nothing will help - but you must try.  You should give every treatment protocol a fair shot.  You can always stop if it hurts you.  If you don't try, people will have less confidence that you are someone they can help.

Several of these points could be summarized as "be persistent".  Be persistent with seeking help, be persistent with helping yourself, and be persistent with hope.