LIVING
with
a
LUPUS
Dx

• When you are diagnosed with a serious chronic autoimmune disease, like SLE, it is normal to question your well-being and even your mental ability to cope with the life changes that are a part of living successfully with a serious chronic illness.
• The following basic suggestions are for consideration in order to help you to manage your illness better by understanding your illness and the treatment plan established by your physician or your primary caregiver.
• Ask questions of your doctor about your particular condition, especially what changes and symptoms you can expect to encounter.
• Compliance with your physicians, by following the treatment plans designed by them, is vital in order for you to receive the best medical care.
• However, if you are unsure of the treatment plan or any part of it, do not be afraid to ask questions or even to get a second and/or third opinion.
• Also ask questions about the side effects of medications and medical tests and the effect or benefit they will have on your condition.
• Let your doctor know if some new symptom is occurring.
  
• People diagnosed with chronic illness often feel that their doctors are going to think they are chronic complainers if they are honest about how they are feeling.
• They may worry that their doctors will simply give them more prescriptions, adding to the many medications they are already taking.
• Another fear patients may have is that if they complain too much, their doctors may not want them as patients.
• It is much better to discuss what is going on and how it might be treated than to worry about what the doctor will think.
• In short, don't be intimidated by the medical profession.
• Remember, your doctor is your partner in fighting your disease, and by being honest and up front with your doctor, at all times, you will inevitably be helping yourself.
• Play your role in the treatment plan as an active 'participant/partner' with your doctor.
• Once you are both satisfied that the plan is right for you, you should follow it with total compliance, questioning your doctor when you feel it is necessary, with total honesty.
• Fatigue may accompany many of the autoimmune diseases, especially with lupus.
• Learning how to pace your activity level can put you back in control of your illness.
  
• It is important to listen to your body and stop before you feel you are tired.
• Pacing your activity can also help you sustain a relatively normal and consistent energy level.
• Patients will often feel guilty if they slow their pace and therefore rest only when they are not feeling well or are very tired.
• This forced rest period can last a few days and patients then try to accomplish all they were unable to do during the time they were resting, and so undoing the good that the rest did.
• The cycles of high activity and prolonged rest periods can interfere with the managing of the disease process so creating a need for more medication to control the symptoms accompanying the illnesses, a vicious circle.
• By learning to organize your priorities, you will be able to accomplish as much or even more, while feeling better both physically and emotionally.
• If you require a special diet, then following this diet is very important to your health and by doing so can play a major role in the management of your illness and your sense of well-being.
• Learning the ins and outs of nutrition and healthy food preparation puts you in control of your diet, while at the same time you gain better management of your disease.
• You can expect to have a variety of emotional responses once a diagnosis is reached.
• Typically, newly diagnosed patients feel the 'anger, denial, bargaining, depression and acceptance' cycle, (initially identified by Elizabeth Kubler-Ross), as a response to coping with a significant loss and major life changes, initiated by the onset of lupus.
• You may feel isolated from others and probably will experience fear of the unknown with regard to your present day activities as well as your future.
• Attempting to understand these responses and their causes will help you to determine what works best for you to overcome them.
• Be open and forthright with those around you even and especially when not well.
• It is important that you do not blame everything that goes wrong on your illness.
• Become open with others, letting them know how you really feel and what you really need from them.
• Not sharing honestly is usually interpreted negatively and gets in the way of the real issue, which is your need for support.
• Learn to feel that it's okay to lean upon your support system when you need to.
• Dealing with the emotional aspects of having a chronic illness is a challenge, and some of the techniques you use may involve some of the following:
  • trying to keep up a normal life-style even if limited initially
  • pacing yourself and your activities to a comfort level
  • using relaxation techniques when everything is too much
  • controlling your pain with the help of your doctor
  • joining support groups to relate to others in like situations
• You must find out what works best for you in each situation.
• Understanding that during your unstable emotional state, trying to cope can be fatiguing in itself, but it is a step in the right direction.
• Give yourself and your family and friends time to adjust to the new and challenging diagnosis.
• Nobody adjusts overnight to something that can significantly impact on the rest of their life.
• Viewing life with a serious illness as just one more of life's challenges can be helpful.
• Understanding that your experience of feelings of worthlessness, depression, anger and even self-pity is normal and will help you to master the coping techniques necessary to live in harmony with your varying moods and symptoms while living with your illness.
• Understand that you did nothing to cause your illness and that life is not always fair.
• Bad things do happen to almost everyone at some point in their lifetime, and it is how we deal with these life changes that makes the difference between living 'a life of coping' or 'a life of moping'.
• Often the unpredictability of a serious illness will make you feel out of control of your life and feel a loss of your well-being, causing anxiety for all those who are involved around you.
• Joining a support group for persons with chronic illness is very helpful to many patients especially with overcoming their feelings of sudden inadequacy.
• Chronic illness like lupus, rides a 'medical merry-go-round' and often has so many ups and downs that it can be both physically and emotionally draining.
• How you handle this emotional roller coaster is very important to your well being and very personal in the sense of maintaining your quality of life.
• Professional counselling may be in order if you are unable to cope in spite of every effort to do so on your own.
• Your primary care physician (PCP) can help you with referrals to medical specialists in all fields including those trained to help with confusion, despair as well as depression, all of which can be caused by living with a chronic illness like systemic lupus.