If I knew now what I knew 15 years ago..a series
“Please don’t tell me the Diet Coke I’m drinking is bad for my pain, I already know”
an open letter on behalf of myself and other pain patients
by Tracey Chester,
Founder and Clinnical Director of mental health at Pain Trauma Institute, in San Diego County
If only I knew then what I know now: My journey with chronic pain — part I,
“The Comeback” (When your friends just don’t understand.)
The question is: If I knew then what I know now, how would I have responded to an upsetting comment?
It is a question with no real answer. Because to know what I know now, I had to go through a lot of missteps and misdiagnoses, and I had to realize that the trauma I suffered in early childhood affected me both physically and mentally.
Did you ever wish you had a good comeback thirty minutes after somebody said something upsetting to you? Like Geoge Costanza in Seinfeld episode Season 8; Episode 13 (https://en.wikipedia.org/wiki/The_Comeback_(Seinfeld)
Well, when it comes to my journey with chronic pain, the story below was just such an instance, except it took me 15 years to think of the comeback.
There we were, a group of women at a luxurious spa celebrating a friend’s birthday. We were surrounded by waterfalls and exotic plants, enjoying delicious food and drinks under the California sun. They were drinking wine and cocktails, and I was enjoying a DIet Coke. However, as I sat with them, I found myself scared and confused, pretending to be as happy as they were, and trying to relate to their daily trials and tribulations. The problems they spoke of seemed irrelevant to me. I wished I had their problems rather than the issues I was facing related to my pain which was out of control and not yet diagnosed correctly. I would soon withdraw from that group of women, feeling misunderstood, yet also empowered to be around people with whom I had positive experiences. But at the time, I was very lonely and starting to wonder if maybe this group was negative and judgmental– or maybe it was just me. I think it was both, but I hadn’t yet healed emotionally or physically enough to view the situation objectively.
So we’re sitting there, and one friend yells across the table, “You know, Diet Coke is bad for fibromyalgia pain.”
I thought to myself, “She has the audacity to tell me what’s good for me, as she sits there drinking tons of alcohol?” I was overcome with strong emotion I wasn’t sure if it was anger, humiliation, sadness or something else. I could not quite identify just what it was because I was feeling ashamed and weakened by my failing body.
But now, looking back, I can see what the true feeling was. It was…frustration. In fact, it’s hard for me to believe now just how frustrated I was, and how long I had held on to that emotion.
What I’d say to her now:
“I’m feeling really really frustrated, and I am confused as to why I am in so much pain, and I’m just doing the best I can. It is so very hard to find a good doctor or health practitioner to even begin to help alleviate my symptoms, and when mainstream medical doctors tell me there is nothing they can do, I feel hopeless.
Then, when I do go to an integrative health specialist and the battery of tests indicate identifiable factors contributing to my pain, there are just too many to tackle at once; therefore, I get overwhelmed and don’t do anything. Or maybe I start, and then try to do one thing at a time, like everyone says to. But my doctor still isn’t treating my pain, so these efforts don’t seem to help, and I stop. And then you say, ‘You know diet coke is bad for fibromyalgia pain,’ which by the way, is just the diagnosis of the year; it turned out to be a lot of things, but not fibromyalgia. And that whole process of figuring out what was really wrong was long, hard, and confusing. I have felt weak and ashamed. So, I know you meant well. I know you are studying to be a nutritionist. I know you want to help and I know you are right. I also know you have no idea how I really feel. I wish you could understand more that I do want to be as healthy as possible, I don’t want to take medication either. I wish you could understand that it’s hard for me just to get out of bed some days. More importantly, I am sad. I am grieving. I am grieving a time when I wasn’t in severe pain, when I didn’t give it a second thought. And I did what I enjoyed. And now I can’t, and that makes me frustrated. You don’t understand, and it’s not your fault because how could you. But it still frustrates me and makes me angry and sad. So, just give me a break. Listen to what I have to say, what I’m going through, and how your offhand comment makes me feel judged and minimized.”
Tracey Chester is a psychotherapist who specializes in chronic pain, trauma and grief. This is a small excerpt of a larger project on her journey with chronic pain. Tracey strongly believes that the strong emotions we feel with chronic illnessare associated with the grief of losing our healthy bodies. This grief is largely unaddressed in most chronic pain psychotherapy modalities.
She is currently the Director of mental health at North County Pain Institute, where she works on a program within the clinic to help patients in as robust a manner as possible, incorporating mental health, nutrition and movement therapy, as well as other modalities.
She is partnered with Dr. Keng Ly, a pain management specialist, who is not only using some of the most advanced and experimental procedures, but is also compassionate and committed to giving pain patients of all socioeconomic levels the treatment they deserve.
