One of the hardest things about having a commonly misunderstood illness is dealing with doctors. Having doctor after doctor either not believe you or give up on you can be demoralizing. Just thinking about seeing a new doctor after so many bad experiences can make me uneasy.
When it comes to doctors not getting it, I try to remind myself that it isn’t personal, even though it can certainly feel that way. These types of illnesses aren’t usually covered in medical school. It certainly isn’t our fault. It may not even be their fault, as they are just practicing how they learned (although it certainly wouldn’t hurt if some of them were a little more compassionate).
Finding doctors who are recommended for those with our conditions helps, but is not always possible. I have found that this is often the case when trying to find a primary care physician. There aren’t any recommended ones in my area. I have tried all the lists and asked around, but without luck. And from what I have heard from others with these illnesses, it seems that finding good primary care doctors is especially difficult.
Since I haven’t been able to get a recommendation, every time I see a new primary care physician, I feel like I am going in blind. I have no idea what to expect, and with all my bad experiences, I have had to be creative in my approach.
Of course, I can call the office to get a feel for new doctor and come prepared with a list of questions and the binder that contains my medical records. I can also hand the doctor records from a psychiatrist showing I am not depressed or test results showing abnormalities and impairments, but it’s not always enough.
I have been to doctors who say they have treated other patients with my illnesses, but they turn out to only be familiar with the misconceptions. I have also had more doctors than not disagree with my psychiatrist and write off test results.
So when I’m seeing a new doctor and have no idea what to expect, I often place bets on what I think a doctor may say. Not for money of course…I either keep the bet to myself or tell my husband or friends who understand.
The bets go something like this: I will bet a doctor will either tell me to exercise or see a psychiatrist--double points for both. It helps motivate me to keep trying, and at least I can laugh it off if they end up telling me things that I know aren't the case or won’t help. If I “lose” the bet, then it’s a pleasant surprise because that means I found a doctor who didn't make the typical assumptions.
Sometimes my bets are outlandish, but at least if I win the bet I will have a funny story to share.
Recently, my toe wouldn't stop bleeding for weeks and I had no idea why. I don’t recall injuring it, but I often don’t realize or remember when I injure myself. I used the opportunity to see if I could find a new primary doctor. I figured they couldn't possibly see blood and puss and think it was all in my head, but I made the bet anyway...told my husband on the way there “watch this doctor tell me this is all in my head.”
Sure enough, nothing was wrong according to the new doctor. If I had not called it, I probably would have cried out of frustration as this doctor said she didn't see the problem. Instead I tried to point out that there was clearly fresh blood and that it had been going on for over a week at that point. But when the doctor followed with scare tactics, I simply went along with her previous statement, knowing I would have a laugh with my husband about it as soon as I left. Of course I got a second opinion and didn't leave my “imaginary” bleeding to worsen.
The main things I keep in mind when seeing a new doctor for the first time is not to take things personally, however hurtful they may be, and to try and remember that if the doctor was particularly hurtful or off, I will probably have a good laugh afterwards.
What do you find helpful when dealing with new doctors?