Did you know that our brains are hardwired to wake us up in the presence of certain wavelengths of light? Did you know that electronic screens, such as televisions, iPads, and smartphones all emit that kind of light? It’s true! In addition to stimulating our minds, watching screens before (or worse, while in) bed actually sends signals to the part of our brain that tell us it’s time to wake up. So for greater ease falling and staying asleep it’s essential to turn off all screens at least an hour before bedtime.
Our physicians are supposed to be here to help us, to counsel and guide us through some very difficult medical circumstances. And we hope they do it with some sensitivity. But sometimes you hear:
• “You’re too old and you’re very, very high risk; you should a) use a surrogate; b) adopt; or c) forget about it.”
• “To tell you the truth, I don’t know what’s wrong with you; maybe we should check and see if you have a pituitary tumor.”
• “I know you’re only 25, but you DO have high blood pressure.”
• “Of course you can’t get pregnant; you’ve got PCOS.”
• “You have prostate cancer. Got to pick a treatment. Doesn’t really matter which one. How do you like your eggs cooked?!”
Regrettably, these are all actual quotes from an assortment of physicians in Los Angeles, California – statements so horrifying they tend to get burned into your brain, even if they happened 20 years ago.
Lately, I’ve been encountering a lot of reports from people whose doctors are insensitive, rushed for time, unwilling to explain, overly clinical, or just plain lacking in knowledge about the details of a patient’s condition or diagnosis. Teenagers, young adults, and the newly diagnosed are among the most vulnerable to these types of comments. I’ve been subject to many of them myself, as you most likely have been at some time or another.
How best to deal with a statement that leaves you in shock, hurt, and feeling overwhelmed, vulnerable and scared?
1. In the moment (if you can), call your doctor on it. Point out that you aren’t receiving enough information to feel comfortable with what you’re being told, or that your feelings were hurt, and you’re feeling confused.
2. If you just want to escape that doctor’s office as quickly as possible, then get out, get in your car, get home, and have a good cry.
3. Talk to a supportive friend or relative and invite him or her to go with you to your next appointment. And if that means booking a second appointment for a consultation in the doctor’s office (not when you’re sitting on a table in one of those miserable gowns that never fit), then book a consultation appointment, take a list of questions, and take an advocate with you.
4. Post on a chat forum, blog, or other Internet resource so you can get some virtual hugs and suggestions for how to approach the next appointment.
5. Consider – seriously consider – changing doctors if you are consistently treated badly. Every doctor has an off day, or a less-than-perfect way of expressing some critical fact, but you deserve time, respect, sensitivity, and the answers to all your questions.
If you have questions and would like some empowered answers on how to respond to your doctor, please feel free to call or text me at (310) 625-6083.
Life is challenging even on the best days, and when you’ve got a chronic illness, it seems like the challenges come harder and faster than they do for other people. You may feel like it’s just not worth the effort to take care of yourself, or you may even want to die. Here’s what I suggest instead:
• If you’re feeling suicidal, call 911, or your local suicide hotline (just dial the operator and ask to be connected). Wanting to die is not a normal part of day-to-day life, even with a chronic illness. And if you don’t already have a health psychologist helping you to deal with your illness, get one as soon as possible.
• Get some spiritual support, if you’re a believer. Pray, read spiritual or religious literature, reach out to your faith community, and ask for support.
• Focus on doing what you can, not what you think you should be doing. Sometimes that means just the basics, like eating (something, anything!), and taking prescription medications. The ideal diet can come later. Supplements can come later. The last one of your 13 physical therapy exercises can come later. Just eat, drink adequate water, and get enough sleep.
• Sleep on it. Both depression and anxiety are exacerbated by lack of sleep. If you’re suffering from insomnia, talk to your psychologist or other medical professional, and get some help. For many people, over-the-counter melatonin is enough assistance. But you may need a lot more – even a prescription medication at times – if you just can’t get any sleep. Lack of sleep wears you down physically as well as mentally.
• Call your friends. All of them. People are busy, they know you’re sick, and they don’t know what to say, or they don’t want to disturb you. Call them and talk about something other than your illness or suffering. The mere act of making a connection is healing.
• Education your friends. On a bad day dealing with diabetes, like when someone’s pressuring you to eat something that you know is really horrifyingly bad for your blood sugar by cajoling, “can’t you just eat it this once?,” you may snap, as I once did: “diabetes doesn’t take a vacation!” We all get cranky sometimes, and it’s hard enough resisting temptation anyway, let alone having it thrown in our faces. And sometimes people need to be reminded that, even though you look normal, you’ve got a medical condition that requires special handling.
• Consider taking a break, preferably in coordination with your medical providers preferably. That may be a medication vacation, a temporary lifting of a particular dietary restriction, a few days off from chemotherapy, acupuncture, or physical therapy, a break from assisted reproductive technology, or a break from any other aspect of treatment that’s wearing you down. There are obviously some things you can’t get a break from, but if you’re creative, you may be able to get a sense of relief from the overwhelming burden of having to do it all.
• Get philosophical. Context this as part of your life, not all of your life. If you think of a week-long hospitalization as “all there is,” you’re ignoring the other 51 weeks a year that aren’t nearly as bad. Look at life in balance.
Ultimately, the business of managing a chronic illness is 24/7, and often a lifetime project. It’s normal to have experiences of rebellion, self-loathing, frustration, and just being plain old tired of the whole darned thing. And, you can re-set your mind and body with rest, support, and creativity. No one wins a race if they sprint and collapse; think of this as more of a marathon. It requires pacing, training, concentration, focused effort, and occasional all-out bursts of high performance. With practice and an emphasis on long-term goals and outcomes, you can integrate the rough patches more easily.