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A Caregiver's Poem
A Caregiver's Story, Scleroderma
A Smoker's Story....."I Just Want To Live"
Card of Thanks
Coping With Autoimmunity
Fibromyalgia and Ankylosing Spondylitis
Fibromyalgia Talks To You
Hypothyroidism, Low Thyroid Condition
Induced Platelet Disorder
Life With SLE
Living With Chronic Pain
Lupus Knows No Boundries
Lupus, Scleroderma & Raynaud's
Lupus, I Just Want To Be Normal
Multiple Sclerosis, Diane's Story
Polyarteritis Nodosa, "My Old Doctor Is History"
Polyarteritis Nodosa, Winning The Battle
Pregnancy Loss and Lupus, This Is My Story
Raynaud's Phenomenon: Cold Hands, Warm Heart
Recovering From Depression

Submitted by: Amber, Columbia, MO

Below are some very helpful information I found helpful when I was first diagnoised with Lupus SLE in 1997. I share this information in hopes of eliminating some of the fear and frustration of anyone newly diagnosied; their family and friends too.

When you are diagnosed with a serious chronic autoimmune disease, it is normal to question your well-being and your mental ability to cope with the life changes that are part of living successfully-with any serious chronic illness. A few basic suggestions are crucial for you to consider in order for you to manage your illness better.

red_dot (1K) Understand your illness and the treatment plan established by your physician. Ask questions of your doctor about your particular condition, especially what changes and symptoms you can expect to encounter.
red_dot (1K) Following the treatment plan designed by your physician is vital. If you are unsure of the treatment plan, do not be afraid to ask questions or even get a second or third opinion. Ask questions about the side effects of medications and medical tests and the effect or benefit they will have on your condition.
red_dot (1K) Let your doctor know if some new symptom is occurring. Persons with chronic illness often feel that their doctors are going to think they arechronic 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.
red_dot (1K) In short, don't be intimidated by the medical proffession. Remember, your doctor is your partner in fighting your disease. Be honest with your doctor. You hurt only yourself if you are not up front with your physician. Play a role in your treatment plan. Once satisfied that is right for you, follow it.
red_dot (1K) Fatigue may accompany many of the autoimmune diseases. Learning how to pace your activity level can put you 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 help you sustain a relatively normal and consistent energy level. Patients 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 "catch up" and accomplish all they were unable to do during the time they were resting.

The cycle of high activity and prolonged rest periods can interfere with managing of the disease process and, with some autoimmune diseases, create a need for more medication to control the constitutional symptoms that accompany those illnesses. By learning to spread out your work load, you will be able to accomplish as much while feeling better both physically and emotionally.

red_dot (1K) If you have an autoimmune disease that requires a special diet, following this diet is very important. 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 and, in turn, better management of your disease.
red_dot (1K) You can expect to have a variety of emotional responses. Typically, newly diagnosed patients feel the "anger, denial, bargaining, depression and acceptance" cycle as a response to coping with a significant loss and major life changes. You may feel isolated from others and experience fear of the unknown future.
red_dot (1K) You can expect to have a variety of emotional responses. Typically, newly diagnosed patients feel the "anger, denial, bargaining, depression and acceptance" cycle identified by Kubler-Ross as a response to coping with a significant loss and major life changes. You may feel isolated from others and experience fear of the unknown future.
red_dot (1K) Understanding these responses and their causes will help you determine what works best for you in overcoming them. Be open and forthright with those around you. It is important that you do not blame everything that goes wrong on your illness.
red_dot (1K) Use "I" messages with others. If you are not feeling well, say "I'm not feeling well and I could really use your support." "You" messages are usually interpreted defensively and get in the way of the real issue, which is your need for support. It's okay to lean upon your support system when you need to.
red_dot (1K) Chronic illness often has so many ups and downs that it can be emotionally draining. How you handle this emotional roller coaster is very important and personal. Some of the techniques may involve: trying to keep up a normal life-style, pacing yourself and your activities, using relaxation techniques, covering up your pain, and joining support groups. You must find out what works best for you. Understanding that your emotional state, and trying to cope, can be fatiguing in themselves is a step in the right direction.
red_dot (1K) Give yourself and your family time to adjust. Nobody adjusts overnight to something that may significantly impact on the rest of his or her life. Viewing life with a serious illness as one more of life's challenges is helpful. Understanding that you might experience feelings of worthlessness, depression, anger and self-pity, and that it is normal to experience these feelings, helps you master coping techniques.
red_dot (1K) Joining a support group for persons with chronic illness is very helpful to many patients. Professional counselling may be in order if you are unable to cope in spite of every effort to do so.
red_dot (1K) Understand that you did nothing to cause your illness and that life is not always fair. Bad things do happen to almost everyone at sometime in a lifetime. It is how we deal with these life changes that makes the difference between a life of coping and a life of moping.
red_dot (1K)

Dealing with the emotional aspect of having a chronic illness is a challenge. Often the unpredictability of a serious illness makes you feel out of control of your life and well-being. This can cause anxiety for both you and your family.

Source: American College of Rheumatology

Information provided at this web site is of a general nature and is not intended to take the place of a physician's adivice It is vital that persons diagnosed with, or suspected of having, an autoimmune disease consult with their physician or with the appropriate division at a major teaching hospital, to assure proper evaluation, treatment and interpretation of information contained on this site.

Communication is the key to understanding the day to day struggles of living with a chronic illness. Share your health story with others, submit to: