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Thread: new to lupus site

  1. #1
    Join Date
    Mar 2005
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    Default new to lupus site

    Hi-I am new to this forum. I live too far from any city where there is a lupus support group. I am finding it very hard to deal with the emotional aspect of this disease. I am learning not to be so negative but there are other things. I find I am oversensitive and it is hard to deal with people at times. It took 10 years before my lupus was diagnosed and all of my children and my husband were convinced I was a hyperchondriac. Now I am in my third year of diagnosis and I think deep down they still perceive this as a "fake" illness. I am sure I am not the only one that has or is going through this and I would welcome suggestions as to how to deal with this.-Becky

  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    Hi Becky;
    I know, all too well, how lonely and frightening this disease can be and how those feelings can be exacerbated by family who do not understand the disease.
    After finally being diagnosed we tend to feel a sense of relief. At the same time, other emotions - anger, fear, depression, confusion, grief - may also surface. We kind of go through the following sentiments: "At last - a diagnosis! Now I know why I feel the way I do." "Why me?" "I'll never be able to make plans, because I don't know what tomorrow will bring." "I feel guilty for having lupus and for all the trouble it's causing my family." "Should I tell everyone or keep it quiet?" "Will I lose my job?" "I hate this disease. It's destroying my life and my family." "I'm scared." "Will I die soon?" "Will I ever be able to have children?" "How will we pay all these medical bills?" Some of us develop an insatiable desire for information about the disease. Others may need to work through intense emotions before they can come to grips with their illness and begin to cope productively.
    Every day, we are confronted with a range of issues, from the emotional reactions of a spouse, children, or work colleagues to our own fluctuating physical and psychological state.
    One of the most important emotional issues that we grapple with is the ongoing and changeable reactions of those closest tous, our parents, our spouse, our children.
    Parents of a lupus patient may react by smothering or - the other extreme - by not taking the disease seriously. Because lupus may be genetic, some parents may feel guilty for having "given" their child the disease. Too often we hear, "Don't make such a big deal of it. Just shake it off."
    Our spouse or partner often experiences many of the same strong emotions as we, the lupus patient do. Grief, fear, and anger are common emotions that our spouses or partners feel as they deal with our changing physical condition. Well-established roles and responsibilities within the family may change, leading to confusion or conflict. These changes and feelings can affect the daily workings of the relationship, even threatening its foundation. Spouses and partners may say things like, "I want you to get well. I want you to be the same as when I met you." "I'm afraid you will die and leave me and the children." "I'm confused. Our roles keep changing, and then changing back." "It's hard doing my job and yours, too. I'll never learn how to do the work around the house well enough to suit you." "I'm angry that you feel sick all the time and can't do what you used to. I feel guilty for being angry." "Lupus has damaged our sex life. You're always too tired, and I'm afraid I'll hurt you." "I need to mourn our losses, too."
    It is very difficult for the children of a lupus patient to deal with the large and complex issues raised by having a sick parent. Some of these issues are tangible, whereas others are scary precisely because of their abstract, unknown nature. Because younger children have difficulty articulating their feelings and concerns, these emotions may go unnoticed or may be acted out in negative or disruptive behaviors. Older children with younger siblings may feel resentment as well as concern. Children's fears and feelings may emerge in statements such as: "We never play anymore because you're always tired or sick." "Is something terrible going to happen to you? Will you go away forever?" "You've denied me my childhood. I don't want to be responsible for my little brother all the time."
    Then, there is our own emotional state. The physical repercussions of lupus, such as fatigue, weight gain, or an increased sensitivity to sunlight, can trigger intense emotional reactions. We go through some of the following emotional states: "Nobody understands how it feels to be this tired." "I feel like I'm trying to move through molasses. Even my bone marrow feels tired." "No matter what I do or how much sleep I get, I still wake up tired." "Between pain, stiffness, and fatigue, I feel like an old, old person." Suffering with Lupus often makes us go through the following changes:
    * Changes in personal appearance - skin, hair and weight.
    * Changes in physical and mental abilities
    * Depression
    * Worries about the future

    We need to learn how to develop effective coping skills. Many of us go through feelings of powerlessness. Some of us may choose to submit to the disease, accepting lupus and a lifestyle of illness as part of their identity. This choice may appear attractive to a newly diagnosed patient who is exhausted from the long battle of uncertainties related to lupus or to a long-term patient who is exhausted from fighting the disease. However, this option offers a life of self-pity, negativity, and significantly diminished horizons.
    The second option is for us to create a new identity based on reworked, realistic goals and expectations. This second option is based on a sense of greater control, an improved self-image, and a positive and hopeful attitude. This option requires imagination, resilience, and determination and depends heavily on the existence of an adequate support network. This option offers true quality of life.
    There are some ways that we can gain control over feelings and emotions:
    First, we must assess our needs and the needs of those around them. This includes evaluating our personal strengths, resources, and weaknesses; and developing effective communication strategies for dealing with family, friends, and our health care team. We need to become pro-active in educating our family and friends about the disease, our needs and our circumstances. We must become pro-active in seeking out other supportive mechanisms, such as: support groups, educational and self-management programs offered by the Lupus Foundation of America and the Arthritis Foundation, and even pen pals.
    We must gain control over our new physical limitations. Accurately assess our pain and fatigue levels and understand how changes in these levels will affect our ability to work, play, and carry out our daily living. We should try to develop an effective self-management program that sets out achievable goals, realistically paces activities, and avoid vercommitments.

    Gaining control medically
    Most importantly, we have to gain control over our medical treatment. Insist that your doctors, nurses, and other professionals involved in your lupus care pay attention to (and take seriously) all warning signs of an impending flare. Insist that you medical team engage in open discussions with you about your health, your treatments, you medication use, possible side effects. Arming yourself with knowledge and using these strategies will help you to gain a sense of increased medical control over the disease.
    Remember that research advances are increasing the understanding of lupus and leading to improved treatments and medications. These advances and a growing body of practical experience in living with and controlling lupus point to a prognosis for lupus patients that is far brighter than it was even 20 years ago.
    When you feel more in control of your health care, your emotions, your family and friends, you will find that your coping mechanisms are much more useful and helpful.
    Best of Luck and Remember: You are NOT ALONE..we are here to give you support, information and understanding.
    Peace and Blessings

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