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FEELINGS AND CONCERNS ABOUT HAVING LUPUS
It's not unusual to feel somewhat overwhelmed and have a wide variety of emotions when you find out that you have a chronic condition like lupus. For example, anxiety, sadness, confusion, anger, uncertainty about the future, relief at having a diagnosis. People often worry and have thoughts such as, "lupus will become the constant focus of my attention"; "lupus will define who I am"; "my life will be forever limited by having lupus".
While these feelings, reactions and thoughts are all 'normal' when someone is faced with lupus, anxiety, sadness, anger and negative self-talk can take a toll on your mental and physical health if they persist over time or worsen in degree. For example, sadness and anger can worsen into depression. Anxiety, worry and negative self-talk can contribute to insomnia and a worsening of fatigue.
Below you will find some tools that you may want to explore to help you to understand and deal with the feelings and concerns that you have about having lupus.
GRIEVING THE LOSS OF 'PERFECT' HEALTH
You may want to explore Kubler-Ross's work on grieving. The stages of coming to terms with loss apply to the loss of health as well as the loss of a loved one. It may help you to understand the various stages of grief (denial, anger, bargaining, depression, and acceptance) as you move through them, and possibly return to some of them over time, in the course of dealing with lupus.
Recommended reading: 'On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss' (2005) by Elizabeth Kubler-Ross and David Kessler.
MANAGING STRESS
You can't get rid of all the stress in your life - stress is a natural part of living.
"A certain amount of opposition is a great help to a man. Kites rise against, not with the wind."
But too much stress or stress that isn't managed effectivly can have a negative impact on your physical and emotional health. See: MyHealth AB - signs of stress. Stress can also contribute to a worsening of lupus symptoms, or trigger a lupus flare, so finding ways to help manage your stress is a very important part of living well with lupus.
Not everyone will choose to manage stress in the same way. Here are some suggestions that may appeal to you:
- Take the time to 'tune-in' to your body and how you are feeling on a regular basis (at least daily). For example, does the neck and shoulder tension that starts at work develop into a headache in the evening? Are you snapping at the kids and your spouse when you're tired and hungry after work? Ask yourself,"What can I do to deal with this stress so that it doesn't ruin my evenings? Could you improve the ergonomic set up of your work environment or do some simple stretches during the day to reduce the muscle tension in your neck? Could you keep a snack in the car to eat on the way home to boost your energy and blood sugar level? Being more aware of your stress level will help you to take early steps to reduce it or prevent it from spiralling out of control. Take the Canadian Mental Health Association Stress Test.
- Look closely at your lifestyle and see what could be changed to reduce your overall level of stress.
- Consider how much of your stress is caused by your own unrealistic expectations of yourself and what it would be like to 'cut yourself some slack'.
- Learn to be more 'assertive'. Being assertive, as opposed to being 'passive' or 'aggressive' will help to reduce your stress. It allows you to say 'no' when you need to and to set boundaries on your time and energy to ensure that your essential needs are met. See: MyHealth AB - Reducing Stress By Being Assertive.
Recommended reading: 'Your Perfect Right: Assertiveness and Equality In Your Life and Relationships - Ninth Edition' (2008) by Robert E. Alberti and Michael L. Emmons
- Don't overextend yourself; be protective of your need for breaks, vacations, rest and good quality sleep.
- Take people up on their offers of help.
- Be a planner as much as possible - rather than 'flying by the seat of your pants'.
- Learn to manage your time more effectively by setting priorities, breaking large overwhelming tasks down into smaller tasks that can be accomplished over time, and deciding which tasks are absolutely essential during times of stress.
- Avoid procrastinating - putting things off just keeps them 'niggling' at the back of your mind; it's unfinished business that can contribute to your level of stress.
- Keep a 'to-do' list. This can help you to feel like you are on top of things (less likely to forget things that are important) and it provides a feeling of satisfaction to be able to cross things off when they are done
- Develop good communication and organization systems for your home (with clear responsibilities for yourself and family) so that things don't fall through the cracks. For example, develop a recognized system for dealing with phone messages and bills, and deligate and schedule chores.
- Get rid of the clutter! While some people seem to thrive in cluttered environments, most people find them to be overwhelming and stressful.
- Increase your level of physical activity.
- Explore some of the techniques that promote relaxation such as progressive muscle relaxation, deep breathing, massage, and yoga. See: Simon Fraser University's 'Positive Coping with Health Conditions' - Relaxation Method Audio.
- Get out into 'Nature' - studies have shown that being out in natural green settings can reduce stress, reduce anger and aggressiveness, improve immune function and improve mood.
- Take 'mini-vacations' from your cares and concerns - read a book, watch a movie, play a game, take a long hot bubble bath, or listen to your favorite music.
- Laugh! - laughter has been shown in studies to reduce levels of stress hormones, relieve pain, improve a sense of well-being and improve immune function.
- Reach out to help others - activities such as helping a neighbour or volunteer work can help to get your mind off of your cares and concerns and increase your level of satisfaction.
- Become more aware of the positives in your life. What's going right for you? What do you appreciate? You may want to consider keeping a 'gratitude journal' where you write down the things you are grateful for on a daily basis.
- Share and explore your thoughts, feelings and ideas with people you trust (e.g. family, close friends, professional counsellors, Lupus Society of Alberta staff). It's important to feel connected to others and it is often helpful to get a fresh perspective.
- Consider keeping a journal of your thoughts and feelings. Studies have shown 'journaling' to be helpful in dealing with difficult experiences and the thoughts and feelings associated with those experiences. In therapeutic journaling, in addition to descriptions of your experiences, it's important to write down your thoughts and feelings about what has happened.
Recommended Reading: 'With Pen In Hand: The Healing Power of Writing' (2003) by Henriette Klauser.
- Avoid the use of alcohol, drugs, tobacco and stress-based eating (especially excess sugar and fat) to try to cope with stress. The longer term result is often an increase in your stress level.
- Consider learning to meditate. No longer just for 'hippies' and 'New Agers', meditation has been rigorously studied and found to have many health benefits (e.g. relaxation, reduced heart rate and blood pressure, reduced levels of the stress hormone cortisol, reduced pain, and reduced irritability, anxiety and depression. Meditators report feeling happier and generally more emotional stable. And you don't have to belong to any particular type of group (religious or other) to do it - all you need is you, your mind and a quiet place to practice. See: 'Live Mindfully: reflections on mindfulness, psychology and mindful living' for a selection of excellent meditation mp3's that you can listen to.
Recommended reading: 'Meditation for Dummies: The Down-to-Earth Guide to Balance and Wellbeing' (1999) by Stephan Bodian.
- Explore Mindfulness-based Stress Reduction (MBSR) - a stress reduction program which includes mindfulness meditation (one type of meditation). MBSR has been studied extensively and found to have many beneficial health effects. Dr. Jon Kabat-Zinn, who founded MBSR in 1979, has been involved with many scientific studies of MBSR and teaches mindfulness meditation as a technique to help people cope with stress, anxiety, pain and illness.
Recommended reading: 'Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness' (1990) by Jon Kabat-Zinn, Ph.D.
REDUCING THE POWER OF NEGATIVE THOUGHT PATTERNS
If you have found yourself caught up in a vicious cycle of anxiety, worry, and negative self-talk you may want to explore some of the cognitive-behavioural therapies that have been scientifically studied and shown to have value in helping people deal with difficult emotions, depression and chronic disease (i.e. Cognitive-Behavioural Therapy (CBT) and Acceptance and Commitment Therapy (ACT)). You may like to start by reading some of the books, written for members of the general public, that describe these therapies. Or you may want to find a health care professional, such as a psychologist, to work with you in this regard.
Recommended reading for CBT: 'The Feeling Good Handbook' (1999) by David D. Burns, M.D.
Recommended reading for ACT:
"Get Out of Your Mind and Into Your Life: The New Acceptance and Commitment Therapy' (2005) by Steven C. Hayes.
'The Happiness Trap: How to Stop Struggling and Start Living' (2008) by Russ Harris.
SETTING GOALS
Continue setting goals for yourself (in spite of the unpredictable nature of lupus). Try not to let lupus take control your life or 'call all of the shots'.
Goals are essential to moving ahead in a direction you value, as opposed to just bobbing along like a cork on an ocean, at the mercy of the winds and the currents.
Write your goals down and review / update them regularly. When you write down your goals, make sure that:
- they take you in a direction that you value
- they clearly describe what you plan to do. For example, What are you going to do? How are you going to do it? When are you going to do it and for how long? Who are you going to do it with? etc.
- they are realistic for you to accomplish.
- you have considered some of the potential obstacles to reaching your goals. Plan for ways to deal with these obstacles.
- you can tell when you have either reached your goals or made significant progress towards reaching them.
Recommended reading: 'Suceed: How We Can Reach Our Goals (2011)' by Heidi Grant Halvorson Ph.D.
MENTAL HEALTH RESOURCES
- DISTRESS / CRISIS LINES IN ALBERTA
- Alberta Health Services - Addiction Helpline - offers alcohol, tobacco, other drug and problem gambling information as well as support and referral services to callers accessing this toll-free, 24 hour, confidential help line.
- Calgary Counselling Services - Calgary Counselling Centre provides individual, couple, family, and group counselling for a wide range of difficulties including: depression, stress, separation and loss, domestic abuse and health issues. No referral is necessary to initiate counselling services. Fees for the Centre's programs are based on a sliding fee scale, according to the client's annual gross family income. The fee will be established during the initial telephone call with our Intake Office. However, fee charges can be discussed with your counsellor during the first session, if the established fee is not manageable
- The Support Network - Edmonton and Area - The Support Network is here to listen when life hurts. It's a safe place to be heard, sort out thoughts and feelings, and begin exploring options to get help.
- Canadian Mental Health Association
- Canadian Mental Health Association - Alberta
- Faculty of Health Sciences, Simon Fraser University - Positive Coping with Health Conditions: A Self-Care Workbook - self-care manual authored by scientist-practitioners with expertise in issues relating to coping with health conditions.
- Mood Disorders Society of Canada
- MyHealth Alberta - See: Mental and Behavioural Issues
- Lupus Foundation of America - See: Depression and Memory Loss and 'Lupus Fog'
- Lupus Foundation of America - See: Coping With Lupus
