Toxic Positivity

Gaslighting, in particular medical gas lighting, has received a lot of attention lately. According to this excellent article by the Cleveland Clinic, "Gaslighting is a form of emotional abuse and mental manipulation that will leave you questioning your own reality and have you wondering if you’re in the wrong in nearly every argument." For an in-depth look at medical gaslighting, you can check out this video. Because of all the awareness, gaslighting is on my and my husband's radar. When we are in medical appointments, he makes sure our questions are answered and my symptoms are noted appropriately. So I was totally taken off guard when I encountered the reverse of this, toxic positivity.

Positivity sounds, well, positive, right? Did you know that it can be taken too far and become detrimental? I didn't. A couple of years ago I had my first appointment with one of my doctors, a surgeon actually. I won't name him here because the purpose of this post is not to call him out, but to educate people on this very real, and very dangerous interaction style.

On the surface, I would say the doctor did everything right. He took plenty of time with me, my appointment with him lasted and hour and forty two minutes. He validated all of my concerns and symptoms. He looked me in the eye. He held my hand. He told me he would help me. All good things, right? So what am I here to warn you about?

He started off by acknowledging, almost apologizing, for the medical gaslighting I had experienced in my past. He was furious with other doctors who would do that to patients. I felt so seen and validated, tears welled up. He didn't have to do anything else, he already had me ready to believe anything he said, a very dangerous place. Next he went on to talk about my condition, Ehlers-Danlos Syndromes, and the pain it causes. He acknowledged that I deal with a great deal of constant pain and that this had built a high pain tolerance in me. That made me feel strong, powerful even. Someone else, someone with knowledge and experience, validated the pain I feel. He said that I have a high pain tolerance. So there everyone who called me a wimp! So there everyone who said I was making a big deal out of nothing! So there every doctor who blew me off! Yep, he was my hero and he had me eating out of his hand.

Next he began the physical examination. He pressed and manipulated different muscled, nerves, and joints. He kept saying, "It hurts when I press here, right?" or, "This hurts, right?" You know how you can object to leading a witness in court? This should be very much the same thing. You see, those things didn't hurt. I felt them. I felt his hand on me, the movement of my body, pressure, but not pain. But I wanted to validate him, after all he had validated me, it was only fair! So I said, "Well, it doesn't hurt, but I feel discomfort." His answer? "That's because you have such a high pain tolerance!" Another gold star for me! Over and over through the examination this happened. I think only one or two things actually had some level of pain, which I did express. At the end he determined that I was in need of 17, yes SEVENTEEN, different surgical procedures. 

During my pre-op appointment, the surgeon went over all the procedures he was going to do at 60 miles an hour, while diagramming them on my body in pen. By the time he was done I felt like he had explained everything, I certainly had the diagram to prove it, but I understood nothing. I felt like if I asked questions I would look dumb. I might disappoint him. He thought so highly of me after all. He pointed out two areas that he was going to operate on and told me that they would really hurt for 3-5 days. I had read up on Facebook about this procedure so I knew to ask about pain meds, and I told him that Oxycodone does absolutely nothing for me. Good thing I did since this is his standard prescription. This is a bit of knowledge that came out of my brain tumor journey. I now know what pain meds DO work for me and I asked for those instead, which he was happy to prescribe. So he sent me home with a prescription for enough meds for 3-5 days. 

Hindsight really is 20/20. Looking back on this five months after surgery I probably only needed two or three of those procedures. I probably would have seriously benefitted from those 2-3 procedures and I would have healed up much more quickly and had significantly less complications. Those 17 procedures led to a 5+ hour surgery, which my husband is still in negotiations with the hospital and insurance to pay for. Five months later I am still dealing with swelling, stiffness, pain, and loss of function. I am in therapy twice a week to work on it and I do exercises and use braces, etc. at home. I met another person at the EDS conference who had a similar surgery with the same surgeon the same month I had (what are the odds?) She recognized me by my scars 🤣. She had some more positive benefit than I had and less swelling, but that was likely due to some acupuncture she'd had done on her scars. It sounds like her experience was almost copy+paste of mine, although I had a few "extra" things thrown in for flavor. 

This surgeon sees what he wants to see. He believes that all people with the diagnosis of EDS will have the same presentation, which is categorically untrue. They will all need certain surgical procedures. Can he do the same procedures on everyone? Of course! Are they beneficial? I would argue that they are not. Just because you can do something doesn't mean you should. One thing that was echoed over and over throughout the EDS conference was that people with EDS should avoid and limit surgery whenever possible. We are far more prone to complications, and it is so much harder for us to heal. When all that energy is put towards healing, we don't have it for the basic needs of our bodies, opening us up to immune attacks or other injury. 

A surgeon who focuses on EDS should also focus on doing the MINIMUM. They should be in and out and only do what is ABSOLUTELY NECESSARY. Recognize that healing from any surgery is going to be painful, so if your surgeon is promising you pain relief, realize that this is a long-term goal. You'd better be in a good deal of pain to start with in order for this to be a realized benefit. In my case, my pain was moderate and intermittent. My post-surgical pain, even five months out, far exceeds where I was at before. I have definitely not experienced any pain relief from surgery at this point, ask me again in a year. And this is coming from someone with a HIGH PAIN TOLERANCE 🤣🤣🤣

Here's the Thing: Sometimes someone telling you what you want to hear can be just as dangerous, if not more so, than someone gaslighting you.