The Fear of Hoping (free issue)
When you’re desperate for help, hope can be a painful thing
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A note about today’s post. I wrote this last week, but things have changed since. I considered deleting it given the change in my status, but then realized it still has good information in it, re the fear of hoping. So I’m publishing it even though my pain is no longer eased and what appears below “but now…” has changed.
When someone lives with a mysterious illness, they usually also live with a lot of hope. They have hope that the healthcare professionals will figure out the problem. They hope they will be cured and, if not a cure, at least treated. They keep hoping appointment after appointment and treatment after treatment.
But that hope is exhausting. This piece by Krista Petrosino describes hope well. She wrote, “In the world outside of chronic illness, hope is generally a positive feature of people’s lives — it’s a guidepost and a stress reliever, a bright spot in difficult circumstances.” But it’s not that way if you have a chronic or mysterious illness and your hopes are dashed repeatedly.
My own experience
As I wrote in this post about mysterious illnesses, I’ve been living with an extremely painful disorder that physicians have been calling “atypical burning mouth syndrome” (for lack of another term).
Over the years, I’ve had my hopes rise and then be crushed. Many medications and treatments we tried gave me slight relief for a few days, sometimes a week. When I say slight relief, I mean if I told you my pain would be rated at an 8 or 9 out of 10, it would dip to about 5 or a 6. But it never lasted. The pain levels always went back up again within a few days.
Every time a dip in pain occurred, my hopes rose. Could this be it? Could we have found the right thing? Might my pain nightmare be over? I would start telling a few people about it. When I felt really good about it, I shared it with my friends on Facebook. And then the pain would return to full force. My hopes would be dashed yet again.
Last year was the worst
Early last year, my hopes were the highest they’d ever been because the pain clinic referred me to a dentist/MD specializing in oral pain. I thought I had hit the jackpot the first time I met him. He was so empathetic. He listened to me like no one else ever had. My Facebook Memories brought up a post in which I wrote about how wonderful he was and how if anyone could help me, it would be him. He ended up being the author of my biggest letdown throughout this journey. It sent me into a spiral of negative thoughts because he was my last hope.
But that hope is exhausting.
I truly believed him when he said we would figure out the problem. He had a different theory from the other physicians I’d seen, and he was certain he was correct. He outlined the testing and following treatment plan. And then suddenly, out of the blue, he changed course, told me I had atypical burning mouth syndrome, and prescribed a drug that I previously took and caused a bad reaction. He knew that. I told him that and I gave him a list of the drugs I’d tried and the results. He no longer wanted to talk and sent me back to the clinic.
All my conversations with him had been professional and cordial – even when I was treated horribly by the clinic staff. He even called me from Quebec City one evening to apologize for a situation caused by his staff’s negligence. To this day, I have no idea why the about-face. I was crushed.
“Stay hopeful”
People with chronic conditions often hear, “You have to stay hopeful,” or “keep hoping!” And I get it. I have been hoping for years that I’d get relief. But when that hope gets trampled on again and again and again, it’s scary to be hopeful.
Since that horrendous experience last year, I have continued to try other treatments on my own. Sometimes, I think I feel a bit of relief and – yes – I start to hope again. I’ll tell my friends, “I’m afraid to hope,” because I am. I’m afraid to be crushed again.
But now…
There’s a good thing about hope and it’s that there is an unlimited supply. And, as I write this, I am hopeful again because I may have accidentally hit on, if not a cure, a treatment.
July and August were the worst pain months I’d ever had. The pain was so intense that I didn’t know what to do with myself. There was no relief. In the midst of it, I had to switch family doctors (I had given up on the pain clinic after two years). When I saw my new family doctor in mid-August, I discussed the pain issue with him, and we reviewed a few treatments that he thought were worth revisiting. But we put things on hold. My hope meter was too low to want to try anything again at that point.
A week later, I started taking a drug called rosuvastatin to treat a sudden spike in cholesterol levels. I have a weird sensitivity to many medications, so I started on the drug slowly. It took three weeks to get to the target dose. And my mouth pain began to decrease. And decrease. And decrease.
I’ll tell my friends, “I’m afraid to hope,” because I am.
Two weeks after being at the target dose, I noticed that my pain levels were about a 4/10 most days, sometimes even dropping to a level more like discomfort than pain. A week later, I could eat something slightly spicy and enjoy a hot drink.
The pain has not disappeared completely. I’m still in a lot of pain at night, and I still experience some level of burning during the day, but there has been a significant improvement to the point that I am starting to enjoy food and drink again. I can give presentations and speak for extended periods without thinking about how much my mouth hurts.
A few years ago, my oldest son gave me a wonderful bottle of wine for Christmas. I love good wine. I’m not an expert, but I can appreciate the different flavors and scents. One of the highlights of a 2018 trip to Italy was an excursion to Tuscany, where I fell in love with wines like Brunello di Montalcino. Oh, how delicious that was!
But when my son gave me the bottle, I wasn’t in a good place to enjoy a good wine. The pain took that away from me. I still drank wine occasionally, but I didn’t want to waste an expensive bottle because I couldn’t enjoy the experience. So, I put it in our wine cupboard and told my husband we would open it when my pain eased enough that I could savor the wine and appreciate it. I think it might be that time.
Edited to add: As of this past weekend, my pain has returned to its previous levels and that bottle of wine will remain unopened. I can’t give up because it’s not an option, but once again, the hope has been dashed.
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