Hello dear friends!
The day has finally come. You’ve counted down on your calendar, and you’ve waited for weeks to get an appointment. You’re full of new hope and enthusiasm, thinking that finally this one will have the answers, this one will have the solutions. You’re fidgety in the waiting room, you clasp and unclasp your hands, sipping at your water repeatedly, preparing to donate your blood and urine for the chance at real test results that actually mean something. You make it back to the exam room, heart fluttering with nerves, and the doctor opens the door. You immediately launch into your well-rehearsed monologue, flicking through your own stack of health records that you copied and put in a binder, just for today. You can see their eyes glance over everything, their fingers flitting across the keyboard or notepad. You wonder what they’re writing down.
Maybe you get a nod of acknowledgment, or a small smile of support. Perhaps you get neither. Maybe you do manage to get lab tests ordered, and you’ll just think about how you’re going to pay for them later. You want so badly for this doctor to be “the one”, maybe you try to ignore the small pit forming in your stomach after one too many miscommunications or dismissals. You’re too high on adrenaline to protest when the exam is over, and let yourself get shuffled back out to the waiting room. You beat yourself up about all the things you forgot to mention, or wonder if they were relevant, or worry that you seemed like another “crazy person with a chronic illness”.
You refresh your inbox repeatedly over the next few days, checking your voicemail for a sign of something. Anything. Then, at last, you see something pop up. You’ve got new test results. Please view them here. Or the really exciting one- please call our office to discuss your results. You hold your breath as you log on or you dial the phone. Then it all comes whooshing out when you see that once again, everything is normal. Nothing out of range. Nothing suspicious. You’re healthy on paper. There’s nothing more we can do for you. Your heart sinks.
If you’re lucky, you’ll get a cursory note from the doctor, confirming the lack of evidence for your illness, wishing you the best of luck. You wonder to yourself, is that it? An entire ordeal and nothing to show for it? Another doctor, someone who is supposed to advocate for me, validate me, be invested in my health, writing me off so quickly? You live in a sort of limbo for a few more days, hoping they’ll call back, say they missed something, say they want to try something else, say anything at all…until you finally give up and move on, another piece of your hope washed down the drain.
For those of us with chronic, invisible, and mysterious illnesses, this scenario is probably a familiar one. I know it’s happened to me. I know it’s happened to several of my friends and family members. But there doesn’t seem to be much out there on how to deal with this specific kind of soul-crushing disappointment. Hence, the idea for today’s blog was born. If you are struggling with navigating this medical system, and not getting the respect and care that you deserve, it’s worth knowing how to weather the disappointments that will likely come. Cultivating that inner strength, ability to maintain perspective, and stamina of spirit is a wonderful investment to make in yourself.
I hope some of these ideas can help you pick yourself up, dust yourself off, and try again. (Reference to Aaliyah song only somewhat intentional…)
1. Allow yourself to grieve
Yes, this one is hugely important. Yes, it is a real loss when another doctor or medical professional is unable to help you, or writes you off altogether. Allow yourself to feel all the emotions that you experience, which will probably be a mix of anger, outrage, sorrow, despair, and apathy. Make a sacred space for yourself to feel it all without judgment. And if you’re worried about getting caught in the trap of downward spiraling emotions, set a time limit for your grieving. Say to yourself, “this experience really hurt/disappointed/crushed me, and I will allow myself a week to recover from this, before I come back to the drawing board and try again.” But no matter what you do, don’t try to bottle things up, or ignore the sting that you feel.
2. Get yourself an advocate
There is something incredibly powerful about bringing a trusted friend or loved one with you to your appointments and meetings. Or having someone other than you to handle phone calls, letter writing, and other medical related business. Nearly every doctor’s appointment is an emotional affair for those of us with chronic illnesses, so try to find a strong and steady companion to be with you for support. Your advocate can help you remember things you want to say, ask the important questions, and stay strong when following up about your care. If you don’t have a friend, spouse, or family member who can help (and depending on the severity of your condition), you may want to consider hiring a patient advocate.
3. Come back to the drawing board
After so many disappointing doctor’s appointments, I know the temptation to simply give up. Please try to resist this (this is also a good place where your advocate can help), and choose instead to come back and try again. Sometimes it helps to change your tactic (like how you search for doctors), or your goal (like looking for new potential treatments, instead of hard and fast test results), or your expectations (like being open to an ally, instead of someone to tell you exactly what to do). No matter what happens, remember that you are worthy. You deserve to feel better, and you deserve a wonderful and passionate team to support your healing process. It just usually takes a while to recruit all your team members!
4. Ask around for referrals
The internet is a fast-growing and powerful place, especially for the so-called “opinion marketplace”. You can usually find honest reviews of doctors, clinics, medical procedures, and other healing-related techniques, even from people with your same symptoms or conditions. The experience and recommendation from someone in a similar position to your own can go a long way in helping you find a new and better doctor to work with. And of course, on the flip side of that coin, if you’ve had a good or bad experience, you can share that with others just like you. Just be mindful not to engage in harassment, libel, or slander, but simply offer an honest opinion from your unique perspective.
5. Forgive, but don’t forget
Each and every encounter we have in the medical world is valuable, no matter the outcome. It’s important to get some space, gain some perspective, and reflect on what we learned. Think about things you would do differently next time, and also try to think about things from that doctor’s point of view. For your own peace of mind, it’s good to sit back and simply accept that disappointment is part of life, and that many factors (some of which are out of your control) conspired to co-create the experience that you had. Try to release any resentment you have about that doctor or clinic, but at the same time, don’t forget the lessons you learned. This way you can move forward emotionally unencumbered, but more confident for the next time.
There is so much that we don’t know about illnesses and syndromes like ME/CFS, Lyme, MS, and the like. So if you are a patient like me, you are likely going to encounter incompetence, ignorance, helplessness, and misinformation from a variety of healthcare providers. But if you can use these tips and get some coping strategies in place, you’ll be able to weather these kinds of disappointments with (relative) ease.
And I’d like to say a heartfelt “thank you” to all the doctors, healers, therapists, and other wellness advocates who have helped me on my journey. I would not be where I am or who I am today without you!
And to you, my friends: Keep on keepin’ on…
~ Hoping you feel as well as possible ~