People who are battling a chronic illness can often feel disempowered. Many long-term conditions can rob a person’s sense of authority, control or influence, making them feel weak, ineffectual and marginalised.
Perhaps you have experienced something similar?
Maybe you once enjoyed a more dynamic life: pursuing a dream career, engaging in physical activity or being at the centre of an active social group. Due to the nature of chronic illness, life begins to get smaller. As necessary as these restrictions are, the emotional and psychological effects can often be very damaging. A disrupted working life can lead to a loss of meaning or purpose. The abandonment of hobbies can deprive you of fulfilment. Lack of social interaction can make you feel irrelevant. Suddenly you are not feeling like you are in control of very much.
We have experienced similar feelings of disempowerment. Through research, working with others and our own experience, we suggest the following several exercises. While these interventions may not alleviate your physical symptoms, they can enhance resilience and feelings of empowerment, which have been linked to improvements in medical outcomes. Remember that disability does not have to mean disempowerment.
Illness and disempowerment: 7 steps to an empowered Mindset
Identify the triggers
To overcome feelings of disempowerment, it is helpful to first establish what events are triggering them. Think about all the situations where your diagnosis has limited or kept you from living as you’re used to. Many of us, for whatever illness related reason, are forced to alter key parts of our lives.
For example, being forced to stop working because of illness.
Another trigger for you might not being able to perform a whole range of physical activities—everything from daily activities like household chores, to taking long walks, yoga or running.
Alternatively, you may be feeling lonely or isolated or left out because you’re not able to have the same social life as before.
Examine thoughts
This second stage requires you to reflect on what you really think about these triggering events. These triggering events will lead to a whole range of limiting thoughts.
For example, your thoughts about not working may lead you to think that you are no longer useful or valuable.
Thinking about your physical limits might create thoughts about you are no longer capable.
A scaling back in your social life could lead to thoughts about you being less relevant or important.
Link them to feelings of disempowerment
Next it is time to examine the emotional effects of these thoughts. For example, not feeling useful, valuable, capable or important to anyone could lead to feelings of loss, hopelessness or despair. These in turn could reinforce the viewpoint that you have very little power and control. However, it is important to realise that these feelings do not originate from triggers like not working, not being as active or not socialising, but rather your thoughts you have about those triggers.
Search for the evidence
Once you have identified the impact certain thoughts have upon your feeling of disempowerment, search further and analyse the validity of these thoughts.
How much evidence is there that you are incapable or unimportant?
Is it possible that there some contrasting evidence?
Establish the middle ground
Very few things in life are either all or nothing. With most issues there is usually some middle ground. It is unlikely that you are extremely capable at everything or extremely uncapable of anything. What aspects of your life might you still feel capable or important?
Focus on what you do control
Illness is a time when you lose control over many aspects of your life. It is probably safe to say that you did not choose to fall ill. It was not something you could control. Perhaps you cannot fully control your pain, your fatigue or your recovery time.
What do you still control– Your resilience? Your coping skills? Your patient education? There will be something!
Action steps
Make a list of other aspects of your life, which you feel you can control.
What activities are you still physically or mentally capable of doing?
What will your strength, energy or pain levels still allow?
In other words, adapt a trial and error approach. Take pride in the small what you can do and take pride in the discovery process of what does not work.
Adopting an empowered mentality: Questions to ask yourself
1) What are your triggers?
These are the events which you notice lead you to feeling disempowered. Examples could include feelings of weakness or fatigue. Alternatively, the frustration of not being able to engage in work, hobby or social activity because of illness.
2) How does it manifest itself?
You might notice it in your body posture for example slouching shoulders. It may also manifest itself in your voice and speech patterns, for example swallowing your words or speaking with a softer voice.
3) What is the context?
To define the context, you just need to think about how your community or culture set social expectations that affect how you view yourself in the world. It may also include how you interact within your social group. Their attitudes toward your illness and your condition can influence how empowered or disempowered you feel.
4) What is your illness identity telling you?
An effective exercise is for this externalization. Give your illness identity a separate name and voice. What would it be saying to you? It may be that you are a survivor or even a hero. Alternatively, it could tell you that you are a victim, incapable or weak. If this was another person, consider how you would you want to respond to them.
5) Has there been a more empowered version of you in the past?
Consider a time where you achieved a win, even a small one. Next, ask yourself the following key questions:
What did this winning moment feel like?
How did this moment make you feel, look or sound?
What was your voice and body language like then?
How long was this before illness?
What if you could bring this version of you to life again?
How would that person handle your condition?
6) Is there an ideal future version of you?
Think about a version of yourself you always wanted to be.
Very similar to #5, how to they look, feel or sound?
What is there body language and voice like?
Is there a role model which they are based upon?
Could you bring this person to life in some way to?
Have you already at all?
How would they cope with your condition?
What is the nature of the language you use?
The words you use regarding your condition may be more reactive or, in other cases, more proactive. Reactive indicates that something is happening to you, while proactive is that you are doing something? For example, “if only I didn’t have this condition” verses “I am battling an illness.” Which is more congruent with the version of yourself you would like to be. Which feels more empowering?
How would you like to pivot?
This involves looking for ways to shift to a more empowered illness identity.
How would you feel as an illness hero or survivor?
What kind of language, behaviour, speech, body language and even dress could you adopt?
How would this affect your recovery?
Nudges
These are brief, daily activities to help you transition into more proactive habits and an empowered mentality. It could include 2 minutes of mindfulness, while brushing your teeth. Another example might be 20 minutes of patient education, while you are eating breakfast.
Achieve empowerment through illness: 9 solution approach
- Small wins. – Within the limitations of your condition, try setting small obtainable goals, which you know you can achieve. This could be setting up simple schedule or organizing the medication you take. The feeling of initial achievement can boost your feeling of being in control and help you feel empowered.
- Establish what you bring to the table. – We all have our own strengths, skills, knowledge and experience. Take time to consider which ones you possess already and how they can be utilized to help you fight through illness. For example, management skills can help you manage your condition.
- Think ahead. –Thinking ahead and being proactive, is a way to empower yourself with potential fail safe and contingency options. This could be applied to a potential flare up or having more tasks to do than your condition will allow you to.
- Minimalism. – Possessing less and tasking yourself with less ensures that you will feel less overwhelmed and avoid any sense of failure. Empower yourself to feel like you achieve a win, by performing within limits and conserving vital energy.
- Patient education. – Knowledge is power. In this case patient education leads to empowerment. Equip yourself with information from your doctors and online resources, so that you are a better prepared illness self-manager.
6. Learn what works and what doesn’t work.
Trial and error are great educators.
See what times of day you function more effectively, what makes you feel better or worse?
What is too much for you?
What are the triggers which for feeling worse, which should avoid?
These experiences will empower you to make better future judgements.
- Exercise. – This may be as little as a few minutes of moderate activity each day. It could be walking, swimming, stretching or calisthenics. Not only will it boost strength and stamina, but also reinforce your sense of proactivity, control and empowerment.
- Connect with others. – This may include existing friends and family or other illness sufferers within a support group. Either way, having your “team” or “tribe” around you can be emotionally empowering.
- Find purpose. – Conventional wisdom suggest that illness is connected to a reduction in life purpose. However, we could not disagree more. Illness is a test of strength and resilience. What does the illness experience teach you about who you really are? How can you use this to help others?
