For some people, mental illness is a long-term or ‘chronic’ condition. Coming to terms with the idea that we might have to proactively manage our mental health for an extended period can be difficult to cope with. It can take a long time to absorb it, accept it, and learn how to adapt our lives to manage it.
What Does ‘Chronic Mental Illness’ mean?
When we first become unwell, most of us don’t imagine that mental illness will be with us long-term, but unfortunately, for those of us who live with chronic mental illness, it is.
Some people have one episode of mental ill-health and never experience another episode again. Of those who have an episode of depression, at least 50% are likely to experience at least one more episode during their lifetime and may experience recurring episodes, but there might be a gap of months or years between each one.
Others experience mental illness longer-term. Hopefully, we learn skills and/or find a treatment that works for us; whether it be medication, mindfulness, painting, running, or ecotherapy. But our mental illness is always there in the background and we might have to take medication or use the tools we’ve learned every day to manage it.
Adjustment To The Idea Of ‘Chronic’
When we first become unwell, or first realise that we’re unwell. Many of us imagine that one day we will be ‘better’. By ‘better’ we often picture ourselves being completely free from illness and not having to worry about it anymore.
For some of us, that’s the case. Unfortunately, for others, that’s not our reality.
Adjusting to the idea that our mental illness isn’t going to disappear any time soon is hard. The life that we grew up picturing might have to change in some way.
For example, we might have always dreamed of having lots of children but experienced postpartum psychosis after our first child. Suddenly we have to weigh up having another child with the possibility of relapse. Maybe we dreamed of being a nurse on a ward, but nights mess with our sleep-pattern so much that we become unwell. So we have to ask for reasonable adjustments or apply to a role that wouldn’t have been our first choice.
Altering our thinking to come to terms with the idea that we might never be ‘cured’ and this might be something that we have to live with and manage long-term can be scary, upsetting and distressing. We might go back and forth between acceptance and denial. Some of us might choose never to accept it and to keep striving for a day when we feel ‘cured’.
Switching From ‘Recovery’ To ‘Management’
Recovery in the context of mental illness is often controversial. There are a wide range of opinions on what it means, and how possible it is. It’s also worth bearing in mind that mental health is a sliding scale – we all have mental health.
Depending on our personal definition of ‘recovery’, part of coming to terms with chronic mental illness can mean switching our goal from that of eliminating all symptoms to one of management.
This can mean that rather than working to eliminate any symptoms, we learn to manage them. For example, our mood could take a steep nose-dive when we’re tired so we have to prioritise getting our 8 hours of sleep each night, no matter where we are or what we’re doing.
For some people, the word recovery means managing symptoms rather than eliminating them, so for these people, recovery and chronic mental illness aren’t mutually exclusive. Others see recovery as elimination of all symptoms.
As we learn about ourselves, we can learn about things we can do to help us stay well. Often this comes back to self-care. Things that can help include renegotiating how we use social media, ensuring we wash our hair at least once a week, saying ‘no’, implementing healthy boundaries, drinking enough water, or writing in our diary each day.
It can also include learning what some of our triggers are. We can’t always avoid our triggers, but we can learn to cope with them.
Chronic mental illness can often be described as coming in waves. Our mental health goes up and down all the time – everyone’s does. We have times when we’re doing okay; we might have to keep doing things each day to stay okay, such as taking our medication, but we’re okay. Unfortunately, when we’re unwell, we also go through waves of poor mental health, which could include things like low mood, high anxiety, mania, psychosis or dissociation.
These waves can be unpredictable. A wave of illness might appear seemingly out of the blue and catch us off guard. This unpredictability can make it difficult to plan anything in the future in case we’re not well enough to do it.
Using Pacing To Manage Chronic Illness
Pacing is a tool that we can use to help us manage chronic illness.
To pace ourselves, we check-in with ourselves each morning. Did we sleep well the night before? Have we had a calm, quiet week or a frantic, anxious one? Is our mood holding up? Once we’ve determined how we’re doing, we then look at our ‘to do’ list for the day and adjust it accordingly. It’s often helpful to arrange our tasks in order of priority so that if we begin to struggle as the day goes on, then we’ve at least got our most important tasks done.
Pacing and balance go hand in hand.
Sometimes it’s helpful to think of managing our mental health as a seesaw. For example, if we look at our upcoming week and notice that on Wednesday we’ve got a ‘people-heavy’ day, we might choose to have quieter days on Tuesday and/or Thursday to balance it out, if that’s an adjustment that’s possible.
Getting balance right can be so difficult. Often, we don’t want our illness to dictate our lives but equally need to prioritise the things we have to do to stay ‘okay’. If that wasn’t hard enough, most of us will find that our mental health is always fluctuating and during our more-unwell times we have to increase the extent to which we actively take care of our mental health.
Balance isn’t about letting our illness dictate our lives, it’s about being realistic, understanding our limitations and adjusting things accordingly.
If It Helps – Use It!
When working on balance, we can find that we spend so much time ‘managing’ that we have no time left for ‘living’.
Hobbies and socialising are an important part of managing our health but the reality of it is that managing the ‘adulting’ parts of our lives, and any therapy we have, can take all the time and energy we have.
There’s nothing wrong with taking the “easy route” sometimes. Using aids to help us manage is a smart move; it’s about minimising the energy we spend on a task but achieving a similar result.
For example; does cooking tire us out? We could batch-cook and freeze, buy pre-chopped veg, use a slow cooker, buy ready-meals, or use an ingredients box with pre-measured ingredients. Does getting dressed frequently leave us in a puddle on the floor? Buy easy, comfy clothes and wear a similar thing each day so that we don’t have to worry about whether this matches that.
There’s absolutely nothing wrong with using pre-made, pre-chopped, pre-weighed, pre-planned, automatic, voice-controlled anything if it works for us. Nor is there anything wrong with paying someone, such as a cleaner, if we can afford to do so.
Medication For Chronic Mental Illness
Depending on our circumstances, we might need to be on medication for life.
Sometimes this is at the recommendation of a clinician. Without it, our symptoms will return so, we must keep taking it. Sometimes it’s a decision that we make ourselves. We might have been on a particular medication for quite a while, tried to come off it a couple of times and relapsed each time, so we make the decision not to risk coming off it again.
Medication can have side effects. Sometimes these side effects will limit our lives to an extent, for example, we might need to sleep a lot more. We might need regular health checks such as blood tests or weight-checks. Some medications can even shorten our lives, but allow us to live the years we do have out of hospital. Medication can affect whether or not we can drink alcohol, or potentially whether or not we can drive.
Often, we’ll have to weigh up the pros and cons of remaining on medication long-term vs coming off it.
Speedy Back-Up Plan
When our mental health is unpredictable, a quick back-up plan can be a vital resource. This plan is something we have in place to fall back on when things begin to slip. It’s something we can whip out as soon as we notice any of our early warning signs; whether it’s increased sleep problems, starting to hear voices again, having more panic attack than ‘normal’, or something else.
This plan often contains things we can do and people we can contact. It might contain things that our friends, family, or housemates can do, too.
Having it written down in a place that’s easy to find means that we don’t have to think about what to do when we begin to feel distressed, we just have to get our plan out and follow it. This helps us to act on any early warning signs quickly, which can mean that we stop them in their tracks before we reach the point where they’re having a significant impact on our lives.
It’s Not All Or Nothing
‘Recovery’, ‘management’ or whatever we choose to call it, isn’t all or nothing. It’s not a case of having all the symptoms we’ve ever had, or no symptoms at all. In all probability, there will be some symptoms that we’re able to manage completely and others that will always be part of our lives to some extent.
We Can Still Live A Meaningful Life
Those of us who live with chronic mental illness can still work towards living a life that’s meaningful for us. It doesn’t have to be meaningful by anyone else’s standards, and people might be keen to tell us that we ‘should’ get a partner/get a better job/buy a bigger house/whatever. But it’s not up to them.
Our life is ours. It’s up to us to explore what gives us a sense of fulfillment. We might not be living our ideal life, but that doesn’t mean that we can’t live a meaningful one. It might take some work, trial and error, help and support, but it is possible.
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