A positive perspective of life with chronic illness

How do you view your life, positively or negatively?

I live with six illnesses and a disability. I have lupus, fibromyalgia, hepatitis B, Anxiety, depression, PTSD, and Functional neurological disorder (fnd) and I suffered a stroke that caused left side weakness and cognitive issues. My life is far from normal because I require support workers for 16 hours per week, am in and out of the hospital, and I need a wheelchair to help me get around in public. How an individual copes with chronic illness is how the person perceives the illness;

whether it is a loss or gain. Perceiving illness as a loss refers to the loss of pleasures, roles fulfilment, functional abilities, self-esteem, love, recognition and normalcy. The following factors outline what influences our coping thoughts and behaviours and how to turn them into positives!

Striving to feel normal Normalisation is the process of how individuals cope with chronic illness. Being diagnosed with a chronic illness means we are different but, we try to maintain a sense of normalcy by keeping signs and symptoms of our illness under control from the public. An example of this is the times when I choose to go out without my chair if I’m not too fatigued or sore to feel “a little” more normal. Another example was when I was waiting for a hysterectomy, I wanted to go and get a coffee at a cafe with my support workers. My thinking was that I used to go to a cafe for a coffee with friends, and tried to continue this by going out on a regular basis so I got an hour of normalcy. While living independently I have learned that by wearing pyjamas to appointments and shopping no one cares what your wearing or doing (to an extent), because they’re focused on themselves. Comfort is more important than looks, especially in the winter months. You don’t necessarily have to go out if you have your own space, invite friends and family over!

Routines and Lifestyles The “normal” part of us doesn’t want help because we’re stubborn and determined. We want to still function on our own but the reality is we need help. We must modify our habits and routines that will be interrupted by medical appointments, fatigue and pain. Certain activities may exacerbate symptoms that need to be avoided or reworked. For example, I am unable to walk as much and as far as I did, and be more social without fatigue, seizures and pain before the stroke, fibromyalgia and fnd. I need to take my chair and a support person out with me. Think of your support people as a gift, they are your companion that helps with shopping, cleaning, going to hospital appointments and transport!

Obtaining Knowledge and Skill for Continuing self-care Self-care is the practice of taking an active role in protecting one’s well-being and happiness, including regular sleep, exercise, relaxation, eating well and good hygiene. Obtaining self-care knowledge also means having an awareness of body cues and interpreting physical changes to prevent a serious flare. I have learned to go to the hospital when I start having chest pain and breathlessness because I once didn’t acknowledge my feeling sick. It got so bad that I had pneumonia and the beginning of heart failure. If I hadn’t allowed my neighbour to call an ambulance I could have died. Knowing your limits and symptoms encourages you to be assertive in advocating for yourself!

Maintaining a Positive Concept of Self When previous abilities are gone, energy and the ability to successfully engage in hobbies have decreased, and there are changes to your physical self and trying to maintain a positive concept of self. Some people with a positive self-concept have skills that allow them to solve problems, think differently, and be more efficient at coping with hardships. The health benefits range from reducing pain and giving greater life satisfaction. Try thinking about what you’ve gained rather than losses. I have gained the importance of life, not taking things for granted, being adaptable, and being resilient!

Adjusting to altered social relationships Chronic illness can cause social isolation and loneliness. A person may withdraw because of having less energy for others because of fatigue, pain, a poor self-image, feeling unworthy, or being physically unable to participate in former social events. Thought processes may be dominated by the illness, controlling symptoms, and obtaining relief. You may need to adjust to having fewer social interactions, but strive to preserve relationships with friends and family members who satisfy your physical and emotional needs. A few friends are all you need to feel competent and loved!

Grief Having chronic illness causes grief over multiple losses. Losses include mobility, organ functioning, energy availability, sexual autonomy, self-esteem, role performance, and social relationships. Life with chronic illness can be viewed as a “challenge”, and challenges are vital in practising resilience. You can view the “losses” as a learning experience that opens the opportunity for growth.

Dealing with role change Role losses may include loss of societal and social roles. For example, I was once an active member of the Urban Vision church community and worked as a nanny and a youth worker. My new role was being chronically ill, and a client of the healthcare system. It sounds disheartening but there will always be other meaningful roles you can have such as inspiring others, by telling your story through YouTube and blogging.

Handling physical discomfort All chronic illnesses are accompanied by pain, fatigue and generally feeling ill. This could also be the illness itself or the side effects of the prescribed medications. As pain becomes chronic, we devote a lot of time and energy to relieving the pain. Being in pain causes fatigue and may cause vomiting depending on how strong painkillers affect you. Lupus and fibromyalgia cause joint pain, muscle pain and nerve pain. Your mind and body are always communicating, and the way you feel can change the way you perceive pain. This is why it can be beneficial for people to try changing their perspectives regarding chronic pain. This looks like finding distractions such as listening to music, watching a movie or a youtube clip. Also, tell yourself that “this pain is not forever” and practise breathing exercises.

Complying with the prescribed regimen Chronic illness causes you to alter habits for the rest of your lifetime. We need to acquire new behaviours, like taking medications at certain times of the day and stopping smoking, drinking and eating rubbish. If we look after ourselves and follow what our bodies need, we’ll gain a positive outcome and have a longer and healthier lease of life.

Confronting the inevitability of one’s own death Chronic illness causes reflection on life’s accomplishments; this is a direct realization of our temporary mortality and making the most of it. Thoughts like “little time left” are unhelpful in day-to-day functioning, in comparison to “live life to the fullest”. I have been informed that I “most likely” won’t survive till 40 but I’m looking onward till 60. Challenge yourself to make the most of the life you have instead of giving in to depression and your demise.

Dealing with social stigma You need to accept yourself and own it. Build a strong support network because it’s important to have people when you’re not okay. It’s ok to not be ok. Think along the lines of “I’m one of a kind.” Fuck those who discriminate, they should be ignored!

Maintaining hope despite uncertainties or a downward course of illness Health problems progress as physiological deterioration and loss of function continue, while hope is a sustaining force that helps the individual avoid despair and actually prolongs life against all odds. There may be uncertainty in day-to-day functioning. I’m never sure if I’m going to have a seizure in public. I need to use a wheelchair or crutch when I’m in public. I hope this post helps you to think about the positives of living with chronic illness!