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Submitted by PatientsEngage on 9 July 2017

Usha Jesudasan, who is affected by polio, diabetes and breast cancer, is a prolific writer of inspirational books and articles. Here, she advises on a holistic approach to cope with the diagnosis of chronic illness and move forward without letting life crumble.

Sitting across from the doctor’s table, I hear him say something. “It is what we call a chronic disease.”

1. Your Attitude Matters

Chronic disease? The doctor explained: “A chronic disease is one which continues for a long time. There is no end in sight, but with good medication, you can live an almost normal life. Some adjustments to diet, exercise and way of life need to be made. Regular medication needs to be followed strictly, but most of all you need to have a positive attitude. Your disease won’t kill you, but a negative attitude will.”

I came away from the doctor’s office feeling numb. This surely can’t happen to me, I thought. Where did I go wrong? I felt like I had failed the test of life. My family were supportive when I told them about the diagnosis. As I lay in bed that night, I didn’t know this disease was going to shape my life. I wondered, should I tell anyone? My family obviously knew. But should I share it with my colleagues, friends and the extended family? Would their respect for me decrease? If I were to tell my boss, would he stop my travelling assignments thinking I am now a sickly person?

“Take it one step at a time,” my doctor advised. “Tell someone when they need to know about it.”

I began an exercise routine, took my medication on time, made changes to my diet and pretended that my life had not changed at all. But of course it had. One day , when I was very tired and tearful, my friend tried to calm me down and said, “Something good that you had, (your health) has been taken away from you, so it is absolutely normal to feel angry, to deny that you actually have this disease. Anger and denial when they find a home within you settle down very comfortably. They invite their friend - self-pity - and they really have a party. Don’t give them a home. Kick them out as soon as you can, as they take away even more from you than the disease”

I slowly began to change my attitude. I began to pay closer attention to my body. What eases my pain? What brings it on? What makes it worse? When do parts of my body swell? When do I feel most tired? When do I feel really good? I used a pretty notebook to record everything from how I feel, to what I eat, to my moods and to when I feel good, tired or want to cry. I began to find a pattern and was able to figure out so many things for myself.

Example:

17th June: I ate half my usual portion of rice. I did not feel bloated during the afternoon. Felt hungry at four p.m. ate an apple. Felt good! Walked the last 1 km home. Don’t feel tired today.

18th June: Didn’t sleep well. Feel so tired I just don’t want to get up. I forced myself to do half an hour of dancing. Ate a plate of fresh fruit, and half a slice of toast. Found the energy to cook breakfast for the family and go to work. Everyone was so appreciative. I’m happy.

2. Prioritize your health

Everybody wants to be independent and manage their disease on their own. So take steps to manage your condition and practice self-care. If you need to take pain killers (PE Tip: Only when essential) do so. If you need physiotherapy, make an appointment. If swimming helps, make sure you do so a few times a week. If a hot water bottle helps, do carry one. Try many things and find out what works for you. Adjust to new limitations that your condition puts on your life and accept them with grace. If you need to cut out sugar, or spicy food, or dairy, do so knowing that it is helping to make your life as normal as possible. Learn to cope with feelings of frustration and isolation when they attack you. Don’t melt.

3. Exercise regularly

Your doctor would have told you that exercise is a key treatment for your disease. You just have to believe this and strictly follow a routine even on days when you just want to go and sleep. Exercise helps our moods. Regular exercise, whether it is jogging, running, walking, or even dancing, releases feel-good brain chemicals that are supposed to ease depression (neurotransmitters, endorphins and endocannabinoids). It reduces immune system chemicals that can worsen depression and increase body temperature, which also may have calming effects on the mind. Exercising regularly also gives you more energy to do your daily work. Praying and singing happy songs also helps!

4. Keep emotions in control

Probably, the most difficult part of managing a chronic illness is managing emotions. Dealing with anger and rage, the feeling which says, “How could this happen to me?” is the hardest all. Your chronic illness will bring a certain amount of stress. Try and experiment with different ways of managing stress.

5. Manage relationships

Most of us don’t live alone. We live in a family or small communities of family or friends. So managing your relationships is also important when you have a chronic condition. You may at some point want to “live in an island “so that you don’t have to see or listen to anyone else’s comments or hear their advice. But you know that this is not possible. Family reunions, parties, weddings and get together cannot be avoided and you should not use your illness as an excuse. If you need a few moments on your own, tell someone why without making a fuss. When you feel refreshed, join the party group.

Focus on the relationships that are most important to you and which bring you joy and laughter. Let go of relationships that add more stress than you already have.

6. Indulge yourself periodically

Most days you will be able to control your disease. But there will be days when the disease will take over. On such days, just be quiet and still. Be good to yourself. Put some money away for such days.

  • Try and get a massage and steam bath.
  • Or a facial and haircut.
  • Or a manicure/ pedicure.
  • Learn something new – knitting, pottering in the garden, yoga.
  • Learn to read and meditate your own way.
  • Try singing – join a local choir.
  • Get yourself a colouring book.

7. Help Someone 

One of the best ways to get over a bad day is to help someone worse off than you are. You become a wounded healer. It puts your own illness in perspective. At the end of the day, you will feel stronger and happier than when your day started.

Some common chronic diseases are: 

  • Alzheimer's / Dementia
  • Arthritis
  • Asthma
  • Cancer
  • COPD
  • Crohn disease
  • Cystic fibrosis
  • Diabetes
  • Epilepsy
  • Heart Disease
  • HIV/AIDS
  • Multiple sclerosis
  • Parkinson's disease

(Usha Jesudasan is a freelance writer who writes about life, values, and the harmony we need within ourselves and our neighbours to live well. Her books bring hope to the many who read it. Some of the books she has authored are - ‘I Will Lie Down In Peace’, ‘Two Journeys’, ‘Healing As Empowerment: Discovering Grace in Community’)