Following on from my article Three Things I Wish People Knew about Loving Someone with Mental Illness I want to share a few things I’ve learned about mental health medication. First, a disclaimer. I have no first-hand experience of taking mental health medication. What I’ve learned comes from my nine-year friendship with Fran and from other close friends.
My loved ones live with a variety of mental health conditions and symptoms including anxiety, bipolar disorder, borderline personality disorder (BPD), depression, visual and auditory hallucinations, suicidal thinking, and self-harm. Some live with more than one of these. Several also have physical health conditions to deal with, including chronic fatigue syndrome (CFS/ME), type 1 diabetes, fibromyalgia, hearing loss, visual impairment, and chronic obstructive pulmonary disease (COPD).
Despite their different conditions and histories, my friends have many experiences and approaches in common when it comes to medication. I’ve chosen three — compliance, weight gain, and vigilance — which seem particularly important from my perspective as a caring friend.
A Commitment to Compliance
Compliance (sometimes called adherence or capacitance) is the degree to which someone follows medical advice. It usually refers to medication (“taking your meds”) but it can apply to other things such as using medical devices, self-care, or attending and engaging with therapy. My friends all follow their prescribing clinicians’ instructions closely and rarely if ever miss a dose. If they do, it’s through a lapse of attention or because of a change in routine. Fran sometimes asks me to remind her about her meds when she is away from home, for example, and we double check she has all her medication before she travels.
My friends rightly consider themselves experts in their lives and how illness and medications affect them. They also respect the professionals involved in their care, although they may disagree with them at times. Fran has sought second opinions in the past, for example. As one friend said to me recently, “They’re the ones who have studied for years!” That respect comes easiest when the professionals — be they clinicians, psychiatrists, therapists, doctors, nurses, case managers, or other mental health workers — are open to the opinions, experiences, needs, and fears of those they are charged with supporting.
It took Fran many years to arrive at a set of meds which, by and large, allows her to maintain her stability without too many side effects. Some struggle to find that balance or are still on the road towards it. I can only imagine — and commend — the determination it takes to persevere, day after day, month after month with regimes of medication, often coupled with other treatments and therapies, with little success to show for it, whilst often enduring the most horrendous side effects.
I would never judge someone who is unable or unwilling to pursue a particular treatment regime if it proves unworkable or unendurable. Indeed, it should be part of their dialogue with their prescribing clinician. But the consistent message from those I know best is that a commitment to compliance is the straightest path to stability and wellness.
Weight Gain
Amongst the varied side effects of psychoactive medication, weight gain is one of the most common, least understood, and hardest to manage. In our book High Tide, Low Tide Fran and I discuss her struggles with weight, body image, and her relationship with food. Before we met I little understood how hard it can be to unpick the complex knot of interdependencies and make meaningful and lasting changes.
It’s a simple fact that many meds prescribed for mental health conditions lead to increased weight. The mechanisms are not fully understood but I don’t need to understand how it happens to know that it does. Fran and I have seen it with her weight over the years we have been friends. Almost every change in medication has led to a weight increase which has been incredibly hard to counter. I hear similar tales from other friends.
Weight gain is not a trivial or benign side effect. It can have serious physical repercussions and its effects on mood, self-esteem, confidence, and relationships cannot — and must not — be ignored. They can too readily lead to depression, despair, and suicidality. As one friend said to me recently:
My choice shouldn’t be sane and fat or skinny and fucking nuts. How many regular people would consider it and how many psychiatrists would put up with it? Being fat is a whole different stress emotionally and socially. It’s social suicide in many ways. Weight gain makes me very depressed. My mind is heavily weighed down by my thoughts as it is. When you add physical weight into the mix, everything feels heavier.
Ongoing Vigilance
Managing mental health conditions is a dynamic act akin to juggling, or keeping a set of dinner plates spinning. What balls or plates am I talking about? It depends on the person, their life experience, and underlying health conditions, but here are a few things Fran is juggling on a more or less constant basis:
- Mental health (depression, mania, agitation, anxiety, suicidality).
- Physical health (fatigue, pain, insomnia).
- Activity, energy, and rest.
- Weight, eating, and drinking.
- Relationships (family and friends).
Each of these requires her attention and ongoing adjustments to keep everything from crashing to the ground. To hijack the familiar saying, the price of wellbeing is eternal vigilance.
Meds are meant to be stabilising but they often introduce new instabilities which themselves need to be managed. Even when things seem stable there is a need for vigilance. It’s the clinician’s responsibility to diagnose and prescribe but no one knows better than the person with illness what they need and are experiencing. For example, Fran can make temporary preapproved adjustments to her medication if she detects the onset of mania. If symptoms persist or worsen she will make an appointment to see her psychiatrist. Another friend recently experienced symptoms of anxiety for which she has been treated in the past. Recognising the dangers she consulted her prescribing clinician to ask if a meds adjustment might be appropriate.
A different friend’s pharmacy stopped dispensing one medication altogether. This wasn’t spotted for some weeks, during which my friend’s stability and safety were severely compromised. It was an error with potentially serious repercussions. Even after the mistake was corrected it took time to restore the full protective benefits of the medication. It’s fair to say my friend will pay very close attention from now on to what is dispensed. It’s also important to keep an eye on — and seek appropriate treatment for — physical symptoms such as insomnia, fatigue, and chronic or extreme pain because these can significantly affect a person’s mental health.
We’ve taken a look at some of the things I’ve learned about mental health medication. Do you have experiences you’d like to share? What would you want others to know? What is the most important thing you have learned? We’d love to hear from you.
Photo by Halacious on Unsplash
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