Medical Gaslighting - a journey to answers (ish).

"Chronic pain patients hide it so well, you can't go by how they look on the outside. They have to learn how to function with pain, you can't just roll around on the floor all day screaming in agony. Medical personnel in hospitals don't even realize this. A chronic pain patient can function with a pain level that would incapacitate any other person."

 I personally don’t tend to share much of anything pertinent online or through social media anymore; frankly, the older I get, the more private I become. And then all of a sudden, there was the urge to begin a formal blog collection. While there are many reasons for that, perhaps that is another blog post on its own!

For this inaugural post, I am choosing to start off nice and personal and jump right into sharing the medical gaslighting battle life has been handing me the last couple of years. I figure if my suffering and experience can help just one other person, it's worth not keeping silent about.

 Smack dead in the middle of February (2024), after what has been a roller coaster of 1.5+ years for me (but really most of my life), I received an official chronic pain disorder diagnosis. For as long as I can remember, I’ve had health concerns and struggles that just never really made much sense. It literally never helped that no matter how much I begged and pushed to be heard by doctors, be it Western medicine or even more naturopathic/holistic … I was always met with: “well, your labs are within normal range” or “Your labs are fine, there’s nothing there.” The gaslighting I have experienced when it comes to my healthcare has been atrocious. So, the way I went through life I genuinely just assumed was normal; what I feel daily has just always been my baseline; when asked about specific symptoms or severity, I just assumed I was getting weak or becoming a hypochondriac as I got older and went longer and longer without any answers. I was often miserable, but complaining or telling anyone about my pain or symptoms never brought any resolution or relief. It was easier to keep quiet until I had a few really bad days again, then begin the repetitive cycle with medical providers of telling them "something is wrong with my body" and them telling me that scientifically there is nothing proving any ailment.

Those closest to me, and who I’ve been able to feel safe enough to trust and be honest with how I’ve felt, can attest that as recent as this past December (2023), I was experiencing such a level of unexplainable and extreme physical pain that it had me at a point where I was in tears begging for a doctor appointment to avoid urgent care or the ER right before Christmas. It hurt to sit, it hurt to lay down, it hurt to walk. Simple, basic tasks people do every day, I was crippled in attempting. Even still, it is hard to describe verbally the kind of pain or ache I was experiencing except that it was on a level I had never felt, and my whole life, I have been told I maintained a high threshold for pain. Really, only 2-3 people have ever really known or seen to what level of suffering I would regularly fight because I never wanted to complain; I never wanted anyone to see my struggle and think I was just being lazy or overdramatic. After all, I don't "look sick" in my appearance, so surely I am just faking it, right?

To say I am grateful for a diagnosis wouldn’t be true. I am not devastated by the news; I am still sorting out how I feel about it all. I am still in the thick of trying to process and fully understand the information I have been given. There is a part of me that is relieved I am not just making things up in my head, but then there is a part of me that wonders if it had all been in my head, would that have been an easier conclusion to accept and “treat?” The doctor/specialist I saw who felt comfortable naming my diagnosis repeatedly (but very kindly) made it a point to tell me this isn't pretend, it isn't fake, and what I have been experiencing and feeling is real. She was able to actually give me what little information there is currently in terms of research where there has been physical evidence found that correlates such a prognosis; it's just that science has not yet been able to provide any standardized conclusive test, such as bloodwork; therefore, it becomes a diagnosis based mainly off of elimination in conjunction of other symptomatic factors. For all you wondering (and many of you will know what I am getting at), I was also informed multiple times that what I was experiencing had nothing to do with my weight. [IYKYK]. Can I tell you that at that moment, after hearing it repeated for probably the third time, for my benefit of course, that what I have been experiencing is real, that I don't just need to "try losing weight," and that this doctor was sorry for all the times I felt not heard or felt like no one believed me - it broke me. 

I cried; I mean, I was holding back shoulder-shaking SOBS.

Right there, in the middle of the exam room, in front of a stranger, I sobbed because, for the FIRST time, I finally felt like someone had heard me and cared about my overall well-being. I wasn't brushed off; I wasn't told to eat better, lose weight, take some OTC pain meds, etc. Instead, my pain and struggle were acknowledged and validated. I was met where I was and provided genuine care by a healthcare provider.

What was even more special, and likely another contributing factor to my emotional release, was this provider I was seeing - she wasn't who I was supposed to see initially. About two weeks prior to this appointment (which I had already scheduled over a month in advance), I was called and informed that my appointment (initially scheduled in February) would need to be canceled and rescheduled for March, as the provider I had been scheduled with was going to be unavailable and there were no openings until that next month. Now, remember, I have been suffering consistently for over a year and a half at this point; I have been counting down to this appointment because I had to schedule it at least 60 days in advance, and now they wanted me to push it off for at least another 30 days?!  I couldn't do it. I begged the individual on the other end of the phone for anything with any provider in the office before March; I didn't have any preference, requests, or allegiance (if you will) to one specific provider. I was referred to the specialty overall, and at this point, I didn't care who I saw as long as I could continue working towards getting some answers and possible relief. So I took the first available they had. 

And then came this appointment, the one I was there sitting in, shedding tears of gratitude because there was a practitioner I wasn't supposed to see initially. A practitioner listened to, empathized with, and took me seriously here. Then, despite her knowledge that there was little to be done in terms of formal "medical treatment," she validated my pain; she validated the suffering that I had been experiencing. If all of these sequences are not God's hand and divine intervention over me, then I don't know what is. Even if I only have to follow up or check in with this doctor between decent intervals of time, she has forever changed my life. Not because she left me at the end of the appointment with devastating news. Was it life-changing information? Yes, but ultimately, she has given me more than anyone else has ever been able to. She provided a friendly, caring experience. She was willing to listen, understand, and BELIEVE me when I said, "Something is not right with my body," and then she spent time educating me, informing me, and providing recommendations and options to manage my symptoms. She didn't make me feel rushed or like an inconvenience. She didn't just push medication onto me and send me on my way. She was, and for now is, the angel on earth that God put in my path. 

While there is some validation in knowing that I have not made everything up that I have been feeling or suffering through, there is not much that current medical practices or science has been able to provide firm answers for in my case. I am still learning, and I am still researching. It will take some time, and I accept this process will bring with it different thoughts, emotions, and feelings. However, in the meantime, I will remain open to figuring out what “normal” for me going forward will entail. While this new normal for me also now has a “name,”  that name will not define or change who I am at my core.

So, if you know me personally, or even just from across computer screens, and you put up with me, congratulations!! I will still be the same sarcastic, goofy, strong-willed (and every other descriptive trait you wanna put in here) Kela that you all know… and hopefully like, haha!

I will learn to have and give myself a little more understanding, care, compassion, and self-respect on my bad days. I’ll have to remember that I can be angry with my body and I can be upset when regular daily tasks are more of a struggle sometimes than they should be - but that with that frustration, I must still remember to allow myself grace and have faith that moving forward, this next chapter of life, does not make me any less of an individual, any less of a mom, any less of a friend, or any less worthy of what life has to offer.

- Kela

Thank you for sticking through this mini-novel and attending my digital Ted Talk.