Waiting. Before this past year, I would have described waiting as boring, frustrating and draining. Then I spent 12 months in pain, waiting for a specialist appointment, waiting for tests, and waiting for surgery. After all that, I’m still waiting for an answer and a solution to my symptoms. Now I would describe waiting as suffocating, crazy-making and excruciating. Waiting can become a form of mental torture when your health, daily functioning and quality of life are at the mercy of hospital bureaucrats.
Exactly one year ago this month, I went to my family doctor because of an increase in pelvic pain. Not only were my periods more painful, but I was experiencing debilitating cramp-like pain more days of the month then not. My family doctor referred me to my OB-GYN for consultation at Mount Sinai Hospital in Toronto. I had to wait three months just for an appointment date. Then, the appointment was rescheduled twice. The office assistant would not call me back, even to give me a rough estimate for when a makeup appointment might be rescheduled. At one point I even broke down on the phone while leaving a message for the admin assistant. More than anything else, I felt helpless in the face of this mysterious pain that was making my day-to-day life so difficult, with no ability to control the outcome.
Finally, 5 months after the initial referral, I saw the specialist. We decided a laparoscopy was the best course of action for diagnosis and treatment of suspected endometriosis. Her assistant told me to call back in two months in order to book a surgery date. When I called, she told me to call back in another two months. I called back and left a message. No reply. Two weeks later, another message. No reply. During this time my pain had spiked significantly and was now difficult to manage, even with multiple pain medications.
I felt trapped. If I tried to see a different doctor, it would take months for an initial appointment. If I tried to even make an appointment with the same doctor, prior to the surgery, it would take months. The pain was making it difficult to socialize, to accomplish day to day activities, to exercise, or to even go on a date with my husband. I felt angry and anxious. My mental health was deteriorating.
I’m not alone in this experience. Researchers have found the waiting period can significantly impact the health of patients. Studies have consistently found negative effects in patients waiting for test results, ranging from adverse effects on recovery times, wound healing times, reduced immune defences, and worsening of side effects from medications. Researchers hypothesize that these effects may be due to anxiety over test results, which is supported by the finding that waiting patients have increased levels of the stress hormone cortisol. Similar impacts have been seen in chronic pain patients waiting for treatment. The study concluded that waiting for longer than six months caused a reduction in quality of life and psychological wellbeing.
Finally, finally, I got the date for the surgery, two weeks beforehand. It went smoothly enough. They found and removed endometriosis lesions. I struggled through the initial recovery. One week later, the pelvic pain came back. Same place, same feeling, same pattern. Perhaps it is part of recovery, or perhaps the surgery wasn’t the solution. Now, I have to make another appointment and – you guessed it –wait.
How you react to the stress of waiting for diagnosis or a test result may be partly determined by your personality characteristics. One study found that a high need for closure -something I can definitely relate to- increases anxiety during the waiting period. In contrast, if you have a high tolerance for uncertainty, you’re less likely to be anxious. Do you tend to assume the worst? This characteristic, which researchers called “defensive pessimism,” also increased waiting anxiety. If you tend to assume things will work out (“dispositional optimism”), then you are less likely to experience anxiety. Constantly ruminating on the outcome of the test result during the waiting period also increases anxiety.
Interrupt the Flow of Negative Self-Talk
So what can you do you if you have certain characteristics that may increase your stress levels during a waiting period for a diagnosis, procedure or test result? Firstly, I learned that it is important to interrupt constantly ruminating on the upcoming medical appointment. Try to be aware of your thought patterns and self-talk during this stressful period. I try to regularly check-in with myself during the day. If you notice that you are dwelling on the frustration of waiting, acknowledge it. Then make a deliberate choice to return yourself to the present. A few minutes of deep breathing or meditation may help to relax you and create space between you and these stressful thoughts.
Distract Your Mind (or, Your new excuse for binge-watching Netflix)
Distraction is another valuable tool. Decide to focus on something that will occupy your mind rather than ruminating on a positive test result or unwelcome diagnosis. This might be a good time to re- watch your favorite comedies, because who doesn’t need a good laugh?
When I find myself thinking about how long I have to wait for my next doctor’s appointment, or my frustration at the lack of answers, I find it really helpful to say to myself “OK, here are those thoughts again”. I’m trying to be accepting of these thoughts, because it’s only natural to be frustrated and stressed in this situation. But if there’s nothing I can do about it here and now, then I try to refocus my attention on whatever I have going on in the moment.
It’s a daily struggle to cope with the mental torture of the medical waiting list. Negative emotions are natural and experiencing them is not a failure to manage your feelings. That’s a lesson I keep re-learning. I try to see it as a question of what is the most helpful response to the negative emotions, rather than getting frustrated with myself for feeling down in the first place.
Self-Care, Self-Care, Self-Care
It’s very important to practice self-care and stress management during this time. Activities that have been proven to reduce anxiety include yoga, exercise, meditation, guided visualization, walking in nature, journaling and deep breathing. Personally I find regular meditation really helpful for my mental sanity. During this time, it’s helpful to refocus on the fundamentals of a healthy lifestyle, like trying to get enough sleep, eating nutritious food and connecting with your social support system.
Here are few resources for staying present and de-stressing:
- Excellent selection of free guided mindfulness meditations: http://www.freemindfulness.org/download
- Free guided mindfulness practices between 15-20 minutes (breath, body scan, movement, yoga nidra): https://medical.mit.edu/community/sleep/resources
- Free Mindfulness Based Stress Reduction online course – a scientifically proven program to reduce pain and stress: http://palousemindfulness.com/guidedmeditations.html
- Free guided imagery practices for relaxation, breathing practices, and meditations practices:https://www.dartmouth.edu/~healthed/relax/downloads.html
- Four practices using relaxation techniques by Dr Emmet Miller and Steven Halpern (approx. $16) used in CBT programs https://www.amazon.ca/Letting-Go-Stress-Miller/dp/B00009N1WZor http://drmiller.pinnaclecart.com/heal-your-body/letting-go-of-stress-cd/18
- Book describing a mindfulness program for pain by an expert in the field: Dr. Jackie Gardner-Nix, (2009). The Mindfulness Solution to Pain Relief, New Harbinger Press. https://www.amazon.ca/Managing-Before-Manages-Fourth-Edition/dp/1462522777/ref=dp_ob_title_bk
- Guided audio program using mindfulness meditation for pain management, by Jon Kabat-Zinn, who first developed programs using mindfulness for health: http://www.amazon.com/Mindfulness-Meditation-Relief-Kabat-Zinn-Ph-D/dp/1591797403?ie=UTF8&refRID=Z21YXTG70YWWCW2V23CX&ref_=pd_bxgy_14_img_2
- The original landmark book on using mindfulness meditation for stress relief, pain and illness by Jon Kabat-Zinn. (Ed. 2013). Full Catastrophe Living. Bantam Press. http://www.amazon.com/Full-Catastrophe-Living-Revised-Illness/dp/0345536932?ie=UTF8&refRID=JTBFZEM4F3RBX8KZ0J3E&ref_=pd_bxgy_14_img_3
- Using sound to promote sleep, relaxation and meditation by Dr. Jeffrey Thompson http://www.soundstrue.com/store/jeffrey-thompson-5379.html
- Using breathing exercises and meditation to promote self-healing by Dr. Andrew Weil http://www.soundstrue.com/store/the-andrew-weil-audio-collection-3626.html
Hoffman, J. (2012). The anxiety of waiting for test results. New York Times. Retrieved 10 Feb. 2017 from https://well.blogs.nytimes.com/2012/07/23/the-anxiety-of-waiting-for-test-results/
Lynch, M. et al. (2008). A systematic review of the effect of waiting for treatment for chronic pain. PAIN 136(1-2): 97-116. Retrieved 10 Feb. 2017 from http://www.sciencedirect.com/science/article/pii/S0304395907003442.
Markman, A. (2014). Waiting is the hardest part, but you can make it easier. Psych Today. Retrieved 10 Feb. 2017 from http://www.psychologytoday.com/blog/ulterior-motives/201407/the-waiting-is-the-hardest-part-you-can-make-it-easier
9 thoughts on “The Mental Torture of Medical Waiting Lists (& How I Learned to Cope)”
I have added a link to this post on my PainPalsblog facebook page – I think that we can all relate to this, chronic illness or straight forward medical referral!
Thanks so much and glad you found it relatable! I’ll be sure to check out the Facebook page too 🙂
Loved this post…totally agree with you. There was one incident where I was pushed around 3 times over 3 months and it was for a serious heart surgery needed…I could literally feel myself dying. In the end I had to pay more to go private just for speed.
And even on days when we do see the doc, it is also a day full of waiting…hours to see doc, then collect meds, etc.
Sharing this to all my channels. Thanks for articulating this perfectly!
So glad you found this post relatable and useful! It’s unbelievable that you had to wait for life saving surgery. Thanks so much for sharing ❤
I can totally empathize with you. My waiting period wasn’t as drawn out or frustrating, but it was still so hard to accept that I was in pain and no one would prioritize that and fit me in sooner. And there’s the added component of wondering what additional damage may be happening while you wait. I have heavily relied on distractions, as you mentioned. Thanks for the other tips!
I can totally relate to worrying what is going on in your body while you’re waiting. Especially when you face a progressive illness or a scary potential result! I agree this is a time when distraction and escapism are a must! Thanks for commenting 🙂
What a fab post! I’ve actually done one of the mindfulness based stress reduction therapy courses by Jon Kabat-Zinn too, it was brilliant! Very glad to have found and followed your blog as I write (less eloquently than yourself) about invisible illnesses and health. Thanks for sharing 🙂
I tried an earlier reply but I think it disappeared! Thanks so much for your kind words 🙂 It’s great to connect with other bloggers writing about invisible illness, and I’m looking forward to reading your posts!