The Guru And My Purple Monster

This is a guest post by Grace Lyons.

I met The Guru the day I was diagnosed with bipolar disorder, and I met the Purple Monster a little later.  Both would leave indelible marks in my life.

The Guru is one of the world’s top experts on bipolar disorder. I was fortunate to be able to see him when I no longer just had depression. My psychiatrist at the time had no other ideas of what might be wrong with me, and how to fix it. Based on my own research, I thought bipolar was likely with an atypical presentation so I went to see the one doctor who would know with certainty.

Meeting The Guru was both frightening and fascinating. I knew I was probably going to leave with a diagnosis of bipolar disorder, and I did. However, I did not expect when he asked questions, he would develop a portrait of my disease, and would be able to make predictions about what my life with bipolar would look like.

He expressed how he was surprise I’d managed to do what I had professionally without being on medication because my disorder was severe. The most difficult part was to hear that I should not expect a cure but medication, and therapy should help me function with the disorder.  He gave me a great deal of information about bipolar, particularly bipolar with rapid cycling, which was what he felt would be most difficult to treat. He did not know about the Purple Monster. The Purple Monster came later and makes the rapid cycling look easy.

The Purple Monster, when I imagined him, is small, fuzzy, and cute, but his appearance is misleading. He also goes by the name “treatment resistance” and this is not small, fuzzy or cute.

Treatment resistance is the kind of monster nightmares are made of. The Guru was correct in his predictions: I do rapidly cycle, and have not been stabilized despite having been on 69 different medication cocktails.  That is difficult.

The Purple Monster is worse because, although, I began treatment knowing the traits of my specific illness means I may not have the same results others will, the Purple Monster ensures I usually won’t have the best results I could have from the medication without the tricks, and manipulations of the monster.

I refer to treatment resistance as the Purple Monster because the terminology sounds like something it is not. It sounds like I’m resisting to treatment, and nothing could be less true. I am excellent at taking my medications, and going to therapy. I know not complying with treatment just gives the monster more room to take over and make a missed medication ineffective. I have known for many years if I stop my medications, I risk restarting only to discover it no longer is effective, and at this point I have way too few options to risk losing any of them.

Instead, the Purple Monster invades my life.

The pattern usually goes as follows:

I develop symptoms, and go into an episode or a current one becomes worse. It goes from one extreme to another. A new medication is added or a dose is changed with hopes it will stop the episode or, at the very least, will not have worsened the symptoms. I take the medication for days or weeks then BAM! The Purple Monster arrives.

The Purple Monster has taken on many forms.  Often, he has simply decided a given medication or combination of medications will not work at all with limited effectiveness. This will result in numerous dose changes until the limits of the medication are reached.  Sometimes, he’s very sneaky and lets the medication work for a few weeks or a month before showing himself. Other times, he shows up as soon as I’ve started taking a medication. This leads to severe side effects or hypersensitivity, and even a tiny dose has extreme side effects. Other times, he has waited a few years before exploding onto the scene, laughing and pointing, saying, “Ha, ha! Made you look! You thought you would okay, but I’m going to ruin this!… and he does.

Sometimes, I’ve been able to continue taking the medication while batting the Purple Monster away. I took lithium for years, despite the Purple Monster showing up in the form of toxicity several times, and causing me to become very sensitive to how much I could tolerate. Recently, I tried lithium again at the dose I’m used to, and the Purple Monster started to laugh as he showed lithium would no longer work for me.

On other occasions, I’ve tried to ignore the monster, and he’d upped the stakes until I lost. Last summer, I started a new medication, an older anti-psychotic. It took a few weeks before I realized the muscle soreness I was experiencing wasn’t from the position I was sitting in or from my new sneakers; it was a side effect of the medication. My psychiatrist adjusted the medication to help with the soreness, but the Purple Monster fought back with uncontrolled tongue movements. This side effect couldn’t be ignored because it could become permanent so I was hospitalized for medication adjustments, including stopping the medication which was just beginning to work fairly well.

The Purple Monster can be sneaky.

Sometimes, he doesn’t just make a medication ineffective, he makes it downright dangerous. I’ve had a number of times that side effects abruptly stopped a treatment. Once, it was a rash which can be fatal if left untreated. Other times, it nearly doubled my blood pressure, and 3 times, the monster showed up as lithium toxicity. Once it was severe enough to land me in the hospital on IV fluids for several days. Another time, I suffered from double vision that lasted for several weeks after the medication was stopped which kept me from driving, and working. Sometimes I would fall over without warning resulting in some very attractive bruises. L

By now, I’m used to living with the Purple Monster, and he is here whether I want him to be or not. He will always affect how my treatments work and it’s impossible NOT to think about him, but I try to give him less power while remaining realistic.

Once, when I was in the hospital, a student therapist became upset with me because I wasn’t more excited to start a new medication. The problem was it had about a 30% chance of helping me. She thought I should be more positive, and I thought I should just be wary of the Purple Monster and his games. It happened to be a medication which previously worked better than any other, and the Purple Monster had really not found many ways to interfere with it. After 6 years of taking it, I believe it’s monster-proof. This medication and the others I’ve taken with it has given me the first glimpse at what it’s like to respond well to treatment for bipolar disorder.

I was finally able to live life with more ease and could see what it was like to feel good. It was a joyful, exciting time in my life, even though, it did not last. I’ll always appreciate that I was able to see how good life can be, and it gave me something to look forward to. I’m hoping soon another treatment will be able to slip beyond the grasp of the Purple Monster. I believe it has to happen someday.

The Purple Monster has made my life more difficult over the years. If only more medications had worked, I might still be doing the career I loved. I’m hoping one day I’ll be able to sleep at night WITHOUT having to take a pile of sedating medications. I’m hoping soon I might even feel good, something I haven’t felt for the last year.

The Purple Monster has taught me some lessons along the way. For example, I take much less for granted because I’ve had so much taken away from me as a result of the monster’s interference. I am more grateful then I’ve ever been for small improvements in my condition because I no longer take positive medication response for granted.

Most of all, for better or for worse, the Purple Monster of treatment resistance has forced me to look deeply at myself, and my bipolar illness. It’s taught me to accept bipolar for what it is in a way I never would have if medications had worked more readily. I will never be grateful for my purple monster, but I’ll always be more aware of the good and the bad because of him.

Grace Lyons
Grace Lyons
I am an occupational therapist now on permanent disability. I worked about 50% of my career with other psychiatric patients. Diagnosed in 2002 after many years of treatment for depression, anxiety and PTSD. I have 2 cats, love to read, knit and sew.