Placebo effect (noun): a beneficial effect produced by a placebo drug or treatment, which cannot be attributed to the properties of the placebo itself and must therefore be due to the patient’s belief in that treatment.
I’ve done some tough reflecting lately on my role in perpetuating this worsening muscle pain and the accompanying symptoms. Some people have said to me (or not directly to me) that it’s all in my mind or that stress is causing my condition. Some doubt if it’s real at all. I can’t tell you how much that hurts. Like I would choose to live like this.
I do believe, however, that part of it is in my mind… pathways in my brain changed after I got West Nile Virus and again, after I was diagnosed with COVID. It’s proven that viruses wreak havoc on the brain and can cause long-term complications in the neurological, nervous and immune systems – to name a few.
People around me – especially since the Functional Neurological Disorder diagnosis – have advocated using the power of belief to improve my symptoms. In fact, I have embraced the idea that I can heal my body – if even one molecule at a time. I have yet to see any results, but I try. However, I just listened to a discussion on the placebo effect and frankly, it ticked me off.
There were all sorts of statistics about people who received a placebo rather than a real pharmaceutical medication experiencing nearly the same level of recovery. This talk said that patients who thought they were undergoing surgery, where they were put under and a surgeon made an incision but didn’t actually perform any procedure – saw dramatic reduction in their symptoms. They were healed nearly as often as those who actually had the surgical procedures.
That’s powerful right there – that the mind just by believing the body is receiving treatment – induces recovery that patients and physicians can measure and attest to. I don’t doubt the legitimacy of the placebo effect and this motivated me to do some real soul searching about my own thoughts.
My health journey is now nine+ years… and my symptoms, progressively worsening. As I look back, there has not been one medication, one physical therapy session, one round of acupuncture, one prayer, one dietary regimen, one hypnotherapy treatment, a single day of my nearly two years of IVIG, my trial of Rituxan (after which I landed in the E.R. with a severe allergic reaction yet still wanted to move forward), one moment of my 10-day hospital stay for plasmapheresis, my visits to the Mayo Clinic, one single prescribed approach that I didn’t fully believe was my cure. Each was an all-in investment of time, energy, belief and literally, our family’s entire savings. I didn’t devote those resources thinking, “Geez, I sure hope this one sticks!” I didn’t go in with doubt. Each and every time, I fully expected a miracle.
Perhaps that’s why the lack of results are so incredibly crushing. I put my hope and belief and money into something I truly believe will help me regain my life… and when it doesn’t happen, I lose hope. Nothing is worse than losing hope. Those are dark, dark days. I live them. I grieve them and then, I get back up and look for the next thing that could lead to my miracle.
I’ve had some pretty awful interactions with doctors in this regard. I’ve been told, “Whatever this is – we know it’s not going to kill you, so don’t worry about it.” Another doctor told me to just pick a physician and stick with them. Yet others assured me that I would not have to live life like this and that they would get to the bottom of what’s going on, who – after a litany of tests – don’t even remember my case or follow-up with answers on what test results mean.
And yet, I keep trying. I do believe that I’m going to get my miracle. I’m going to keep praying for one. I’m going to keep meditating on healing my body. I’m going to keep reading books on the power of belief, and I’m going to continue my relentless search for medical care that reduces this pain and decreases the muscle spasms and cramping.
I wrote a letter to the pain after listening to that discussion. I told it that I can definitively say that with each and every thing I’ve taken on, I didn’t for one second doubt that it was going to be the key to getting better. Hey, I’d take the placebo effect! I’d take just about anything for even a slight reprieve from this round-the-clock pain.
From Invisible Illness to Progressive Disability 