One of the problems with living with longstanding mental health problems is that it can make you feel helpless – especially if you have been having difficulty with symptoms or have not been functioning well for a while. Your ability to independently choose, navigate or create environments that support wellness is a vital characteristic of mental health1. To be more independent, we all need to feel safe and supported, believe in our abilities to be independent, be willing to take reasonable risks to face our fears, and choose to live beyond boundaries – some of which may have been encouraged or imposed by others. Being independent gives us the sense that we are able to influence our environments and life events. Regardless of how much control we actually have in our lives, most important of all is the sense that we are capable of acting for ourselves and in our own best interests.
Why independence is important to your quality of life
Only a small amount of research has focused specifically on people’s independence when living with bipolar disorder. In one study2, people with bipolar disorder who were interviewed about their quality of life described their struggles with establishing independence, speaking in particular about financial independence, independence within their families, and independence within the healthcare system. Problems with establishing independence in family contexts occurred both in parental and partner relationships. Several people in the study talked about how their attempts to assert their independence were made more difficult, in their view, by their family’s ‘over-vigilance’ for recurrence of symptoms. Establishing independence in the context of bipolar disorder can be especially challenging for younger adults. Bipolar disorder often first appears in adolescence and early adulthood, a time of life when people are often struggling to establish independence, even when they don’t live with mental health challenges.
Financial issues included struggles to become financially self-sufficient without reliance on family support or disability income. Independence within the healthcare system was described by some as a need to be a proactive participant in the healthcare process, where the person felt empowered to manage their own condition rather than be dependent on the medical system. One review of studies on engagement of people with bipolar disorder in ‘shared decision-making’ (a collaborative process that supports patients and their providers to make healthcare decisions together) in healthcare settings identified few studies. The authors concluded that many people with bipolar disorder have unmet treatment decision-making needs and desire more involvement, and that fostering greater independence or autonomy in healthcare settings could improve outcomes3.
The concept of independence overlaps greatly with the feeling of “empowerment”, defined as the process of taking control and responsibility for actions that maximize personal fulfillment4. Similar to independence, empowerment includes self-reliance, participation in decisions, dignity, respect, belonging and contributing to a wider community. The process of becoming empowered involves overcoming a state of powerlessness and beginning to gain control of your life. This process starts with identifying your unique needs and ambitions. The next step is the development of capacities and resources that support them.
Independence may be defined as freedom from outside support or control. But with regards to living with bipolar disorder, use of self-management skills often involves relying on support from others when needed. Independence usually requires us to have some healthy dependencies on others – that is, knowing when you need to ask for help and effectively doing so, but not relying heavily on others in times that you can do it on your own. Such over-reliance may lead to your supporters “burning out”, and also to your own sense of lost autonomy and self-efficacy. It’s a fine balance and takes some trial and error to figure out.
Many of the other quality of life domains on our website (see Identity, Money, Cognition, Home, Mood, Relationships) can have a big impact on independence. For example, many research studies show that thinking problems are a large predictor of problems with independence5. Similarly, effectively managing your finances, home, moods, relationships and sleep are building blocks for the outcome of your independence. One area of real future promise for people with bipolar disorder who are seeking to increase their independence or personal agency is in the arena of technology-based and online tools and resources6.
How you can take action
It can be helpful to think of independence as a final product of effectively managing many different quality of life areas. To start, notice what areas in your life you need to improve and find some appropriate self-management strategies to help you accomplish this. Using self-management strategies allows people living with bipolar disorder to feel a sense of control, mastery and independence5. As one person commented, “I have control of bipolar [disorder], it does not have control over me.”7
As a matter of fact, many people who used the CREST.BD Bipolar Wellness Centre to learn about self-management strategies described this as empowering them to “take back the reins” of bipolar disorder8.
Finding a good fit with your healthcare providers and others can help you get the support you need without unnecessarily inhibiting your independence. It’s ideal to find supporters whom you can speak to freely about your concerns, and with whom you feel like you have a healthy partnership. Sometimes you may need to have several supporters to help you with different parts of your life. This is healthy – different people provide support in different ways. It also can prevent you from feeling stuck if one supporter is unavailable. Having several different people to help you also puts you in the driver’s seat, giving you control to get the different types of help you need.
Create a vision for your life
You can start to take control of your independence by envisioning the life you’d love to have, but perhaps got sidetracked from due to difficulties managing bipolar disorder symptoms. Write down the concrete things in your life that currently do, or would, make life meaningful, are fun for you, or make you feel content: perhaps goals, roles and relationships, or activities. It’s important to write down specifically what you would be “doing” if you were living your life in a way that is better aligned with this vision. What are some things that you want to do more of or improve in your life to make it look more like your vision?
Look at your vision and name three values that are very important in it. Values are not the same as goals you’ve accomplished or tasks you’ve completed, but rather speak more to an ongoing way of living life. For example, the value of being a loving partner cannot be completed, but is an ongoing commitment. Other values may include family, intimacy, friendship, employment, community involvement, exercise or spirituality, to name a few.
Now look back to your list of specific things you would do to move towards this vision and set some concrete goals to help you embrace your values. These goals can be long-term, such as being able to run a half-marathon, or short-term, such as running around the block daily. There should be at least one goal you can act on now for each of the values you’ve identified for your life vision. These goals should be described in detail. Your target goal should be somewhat challenging, but something that you are quite confident that you can achieve within your time frame. Ask yourself, what is involved in achieving my goal? How will I know when I am achieving it? Goals are specific and clearly defined, and able to be measured (see SMART goals in the Leisure domain). The action plan should include details about how often, when and where you will try to achieve your goals. Some may be enacted once only while others may be ongoing. For example, if you aim to improve your friendships in general, an achievable goal might be to hang out with a friend at least twice a month.
Tips for taking action on independence goals
One of the challenges of attempting to work on goals is that many people are afraid of the feeling of failure if those goals are not achieved. Often depression, fatigue or simply stalling gets the best of your intentions of taking action on goals. Here are a few ways to try and to ease the fear that might come with taking action on your independence goals.
Create a hierarchy
Create a hierarchy: list all your goals from easiest to hardest and work on one or two of the easiest ones first. Try putting your goals in a hierarchy and rate the degree of challenge on a scale of 1 to 10, where 1 is very easy, 5 is moderate, and 10 is the maximum challenge. After your easy goals have been achieved, then move on to a harder one. Every time you achieve even an easy goal your self-efficacy, empowerment and independence is reinforced. Praise yourself for your accomplishments, and believe that you can do this by yourself!
Treat your challenges as an experiment
Treat your challenges as an experiment: much of the fear that comes with trying to achieve independence goals comes from false assumptions about what may occur if one tries and fails. By avoiding challenge, we never get opportunities to learn whether our self-doubts are true in reality or whether they are unfounded beliefs (that are not true). In order to tell the difference, try an experiment to test out predictions about your ability to achieve your independence goals.
- Write down what your specific negative prediction is that you are afraid of if you try to achieve your independence goal (e.g., “If I ask my friend to hang out, she’ll say no”).
- Write down the alternative possibilities of what may happen (e.g., “If I ask 3 people, one will probably say yes”).
- Write out what experiment could put this prediction to the test: What would you do? Where would you do it? When should it happen?
- What behaviours would need to be present (or dropped) to ensure that I give it a fair attempt? (e.g., “Offer my friend an alternative time to hang out”)
- What problems may occur and what possible solutions might there be? (e.g., “I may not see my friend in person so maybe I could e-mail him instead”)
- Outcome: What happened? What did you observe?
- What did you learn? Was there anything you could have done better the next time? Were your negative predictions correct? Or were the positive outcomes at least partially correct?
Communicate your independence needs
Sometimes, the process of becoming more independent will require negotiation and open communication with friends and family members who have helped support you in the past. You may have relatives or friends who have supported you in the past with tasks that you are now self-managing. Stepping back to allow you to grow into your independence can be anxiety-provoking for people who have previously been in a caregiver role: they may have worries about what would happen if you became unwell, and may be reluctant to stop playing a role in household or money management, monitoring moods, or reminding you about important appointments or medications9. This can understandably cause tension in relationships, as supporters’ concerns may lead them to act in ways that interfere with your sense of autonomy.
It is important to openly re-negotiate changing roles with support persons. It may be helpful to share your plans to work towards your independence goals, and the results of your experiments, so your friends and family can share in your successes and sense of progress. A qualitative study with informal caregivers found that constantly monitoring for signs of future episodes and taking control of situations could lead to burnout and familial tension10. However, having discussions about how to divide the tasks of self-management, and being able to step back when things are going well for the person with bipolar disorder, were associated with more positive and trusting relationships. Having a meeting with a third party such as your healthcare provider can help ensure these discussions are collaborative, healthy and supportive for all involved.
Track and celebrate your successes
It’s important that you remember to track of your successes and to celebrate them. Despite achievements and good progress, often you, or other people, may not notice right away how much you have accomplished over time when you steadily work towards your goals. For this reason it is very important to keep track of your independence goals so that you can look back on them and see how far you have come. Even if you feel the little steps were not that great initially, keep track of them anyway in a log. Together, they may amount to a lot.
Share your successes at independence with others as much as possible! Let other people know what you have accomplished. Let others know what you are striving towards. As you hear yourself talk about it, and as others relate to and support you in your independence, you will start to believe that it is real. This will help to redefine your self-image as a person who is empowered and capable of achieving your goals and managing your life independently. It is also an opportunity for others to share their own goals with you and perhaps even engage in some with problem solving around shared challenges.
- Ryff, C.D. & Keyes, C.L.M. (1995) The structure of psychological well-being revisited. Journal of Personality and Social Psychology, 69(4): 719.
- Michalak, E. E., Yatham, L. N., Kolesar, S., & Lam, R. W. (2006). Bipolar disorder and quality of life: A patient centered perspective. Quality of Life Research, 15(1): 25-37.
- Fisher, A., Manicavasagar, V., Kiln, F., & Juraskova, I. (2016). Communication and decision-making in mental health: A systematic review focusing on Bipolar disorder. Patient Educ Couns. doi: 10.1016/j.pec.2016.02.011
- World Health Organization. (2010) User empowerment in mental health: a statement by the WHO Regional Office for Europe. Copenhagen: World Health Organization.
- Scanlan, J.N., & Still, M. (2013). Functional profile of mental health consumers assessed by occupational therapists: Level of independence and associations with functional cognition. Psychiatry Research, 208: 29–32.
- Murnane, E. L., Cosley, D., Chang, P., Guha, S., Frank, E., Gay, G., & Matthews, M. (2016). Self-monitoring practices, attitudes, and needs of individuals with bipolar disorder: Implications for the design of technologies to manage mental health. Journal of the American Medical Informatics Association: JAMIA, 23(3), 477–484. https://doi.org/10.1093/jamia/ocv165
- Fernandez, M.E., Breen, L.J., & Simpson, T.A. (2014). Renegotiating Identities: Experiences of Loss and Recovery for Women With Bipolar Disorder. Quality of Health Research, 24: 890.
- Morton, E., Michalak, E. E., Hole, R., Buzwell, S., & Murray, G. (2018). ’Taking back the reins’—A qualitative study of the meaning and experience of self-management in bipolar disorder. Journal of Affective Disorders, 228, 160–165. https://doi.org/10.1016/j.jad.2017.12.018
- Baruch, E., Pistrang, N., & Barker, C. (2018). ‘Between a rock and a hard place’: Family members’ experiences of supporting a relative with bipolar disorder. Social Psychiatry and Psychiatric Epidemiology, 53(10), 1123–1131. https://doi.org/10.1007/s00127-018-1560-8
- van den Heuvel, S., Goossens, P., Terlouw, C., Schoonhoven, L., & van Achterberg, T. (2018). Informal Caregivers’ Learning Experiences With Self-Management Support of Individuals Living With Bipolar Disorder: A Phenomenological Study. Journal of the American Psychiatric Nurses Association, 24(6), 531–541. https://doi.org/10.1177/1078390317752864