The treatment burden of a condition is the work required by the patient in managing that condition. For my bipolar disorder that would be taking medication, arranging and going to appointments, participating in psychotherapy (including homework) and following the relevant lifestyle advice.
Doesn’t sound too onerous? Take the first one: taking medication. The side effects of psychiatric medication can be fucking grim and well up there in severity with the impact of actual symptoms. For example, sedation is major problem with antipsychotics for me. I am sure now, looking back, that a significant cause of me having to drop out of university was down to the sedation and not being able to get up in the morning caused by my antipsychotic. But I didn’t realise at the time and just thought I was being pathetic and not trying hard enough… I didn’t advocate for myself with my then psychiatrist (who I think would have been very receptive to my complaints) and that is a huge regret of mine. How seriously your side effects are taken is in large part down to the attitude and knowledge of your psychiatrist. Hit and miss, in other words.
The more severe your illness, the more likely you are to be taking multiple medications including more medications to control severe side effects which then have their own side effects. For example, I take lithium. But I also have to take thyroxine because lithium permanently damaged my thyroid and gave me hypothyroidism. So now I have to take another medication for the rest of my life and deal with blood tests and results and making sure I am on the right dose which is harder than it sounds and can be very frustrating. There are a lot of drugs you can’t take with lithium and I have to remember to be careful and check. I have been prescribed a drug that shouldn’t be taken with lithium and it was my pharmacist that picked up the interaction.
(I am in danger of sounding anti-psychiatry with the medication bashing. I am not anti-psychiatry. I think psychiatry is a mix of ‘art’ and science but then so are all specialities of medicine. Many specialities use very powerful drugs that they don’t fully understand how they work and have serious side effects. Many of those prescribing doctors don’t fully account for what they ask for from their patients. These are not problems specific to psychiatry.)
Following lifestyle advice must be simple though, right? Is it hell. For a start, healthcare professionals are not only inconsistent with the advice they give but also contradict each other. There is not the evidence for lifestyle changes that there is for medication and psychological treatments so no wonder there is conflicting advice. What advice you are offered will depend on the individual healthcare professionals’ opinions and preferences. Take sleep hygiene. A short list of common sense recommendations, right? When you have a severe mental illness, those simple changes are overwhelming. The idea of stopping naps to hopefully, but with no certainty, improve nighttime sleep is just impossible when those naps are your only respite from the long, horrible hours and just making it through the day. Nowadays, I follow the sleep hygiene rules pretty closely and consistently and I sleep very well. It has made a huge difference. But it took years. It also means I can’t do a lot of things other adults can do like spontaneous change routines, e.g. traveling. It feels limiting at times and like I am missing out on things.
I got food poisoning last week. I seem to be quite susceptible to food poisoning despite obsessive food hygiene and cleanliness. I don’t get colds or other infections often at all. I am on omeprazole to control the heartburn I get as a side effect from my psychiatric medication. Because omeprazole decreases the amount of acid in your stomach, it theoretically increases your risk of food poisoning as less bugs are getting killed in your stomach. It’s normal to ingest some bugs every day but your immune system and innate defences like stomach acid deal with them before they can cause disease. Something is going wrong with me.
The standard advice for medication and food poisoning is to just continue to take it as prescribed. I had half hourly diarrhoea but no vomiting so I took my lithium, other mood stabliser, antipsychotic and antidepressant plus the other tablets at the normal time in the evening. But a bit later I couldn’t drink more than a mouthful of water without severe nausea and retching. I could feel myself getting more and more dehydrated as the severe diarrhoea continued. I started getting the bad, coarse tremor and finding it difficult to pick up my mug and coordinate my legs to walk meaning that my lithium levels were becoming too high. I put a repeating four minute alarm on my phone and sat up in bed taking a sip of water at every alarm. It took an hour and a half to drink half a mug of oral rehydration solutions (good tip: if you are taking lithium, get oral rehydration solution sachets so you can make up the drink quickly). I was intensely sedated as the antipsychotic kicked in but knew I couldn’t go to sleep as I had to keep drinking. I think I was actually falling asleep between the alarms. I’m finding this very hard to say, which is weird as this is an anonymous blog, but I was little faecally incontinent as the sedation and tiredness was so strong. Eventually the diarrhoea slowed down and I could drink a little more. I went to sleep for a couple of hours and was much better when I woke up. I could drink normally and my symptoms were gone by the end of the day. But holy fuck was that a horrendous night.
Food poisoning is unpleasant for everyone but it crossed over into frightening for me because of my medication side effects and the effects of dehydration when taking lithium. Scenarios like this are not something that you are going to be warned about in advance. There are other situations that are worsened, or only occur in the first place, due to medication side effects or attempting psychotherapy homework or trying to follow lifestyle advice. The treatment burden can affect so many aspects of our lives. I don’t see a realistic way of completely alleviating the treatment burden, except by avoiding all treatments, but I think it would be easier to deal with if it was better recognised and acknowledged by healthcare professionals. Even for us, just having a name for this set of difficulties and knowing we’re not alone in it is a relief to some degree and reduces self-blame. That’s something, at least.