Lupus: Support and Survival

Lupus and Guilt

"You never lose peace once you find it.
Peace sometimes lies hidden beneath a veil of unkind thoughts, confusion, or pain.
Shake loose the discontent from the veil and peace is readily accessible."
 ~ Rion ~

Lupus and Guilt

You have finally been given a diagnosis for the strange symptoms you have been experiencing. You have Lupus. Once you have learned this, your mind goes on a wheeling cascade of emotions.

  • You are glad because you finally have a valid diagnosis.
  • You are sad because you know the symptoms are permanent. The symptoms may retreat for a short time if you go into remission, but you know at some time, they will be back.
  • You are angry because the disease has changed your lifestyle, possibly caused you to quit your job, and has denied you the simple pleasures in life.
  • You feel pain as the disease takes its toll on your body as the disease destroys your skin and your organs.
  • You feel guilty because these changes are affecting your family or the ones you love.

All of these emotions are perfectly valid, but must be addressed to keep Lupus from causing you to fall into a deep and dark depression. Your doctor can help you address the physical pain and can help with antidepressants for the extreme sadness. But what do you do about the guilt you now feel?

Most people feel they have become useless and feel great surges of guilt. They feel guilty because they are not able to participate in family gatherings because that day happened to be one where lethargy and pain kept you in bed.

Most people feel they are depriving their families because they can no longer hold down the job they once had and can no longer contribute to the family's budget.

So how do we address guilt?

First you need to understand guilt. Guilt is a kind of grieving period.

When you feel guilt, you are in essence feeling bereaved. Bereavement means, literally, to be deprived by death. After someone close to you dies, or you become a victim of a debilitating disease, you go through a process of mourning.

When you are diagnosed with Lupus, your old lifestyle dies and you begin a new one. You feel grief, sadness, and guilt. Bereavement is not restricted to people who have lost someone they have known for a long time. It is also experienced by people who have had lost their healthy lifestyle.

Is it normal to grieve?

Grief is vital in order to accept a deep loss and carry on with your life. If you do not grieve, you may keep the grief bottled up inside you. This may cause emotional problems or escalate the physical illness later on. Working through your grief can be a painful process, but it makes all the difference to your future emotional and physical well-being.

What are the stages of grief?

There is no single way to grieve. Everyone is different and each person grieves in his or her own way. However, most people go through the same stages of grief and it can be helpful to be aware of these stages and to remember that the emotions and changes in mood are normal.

Feeling emotionally numb is usually the first reaction to a loss, and perhaps lasts for a few hours or days. In a way, this numbness may help you get through the explanations needed to inform your family of your disease.

The numbness may be replaced by a deep yearning for the lifestyle that has been left behind. You may feel agitated or angry, and find it difficult to concentrate, relax or sleep. You may also feel guilty, as you realize your family is now going to have to take up the chores you normally do.

This stage of emotional distress then gives way to bouts of depression, sadness, silence and withdrawal from family and friends. During this time, you may be prone to sudden outbursts of tears, set off by reminders of your inability to perform simple tasks, and memories of your old lifestyle.

Over time, the pain, sadness and depression starts to lessen. You begin to see your life in a more positive light again.

The final phase of grieving is to let go of the thoughts of being able to return completely to your old lifestyle and move on with your new life. This helps any lingering depression to clear, and your sleeping patterns and energy levels improve.

How long does the grieving process take?

The grieving process takes time and should not be hurried. How long it takes depends on you and your situation. In general, though, it takes most people one to two years to recover from a major life change.

How can you cope during that process?

There are many things you can do to help yourself cope during this time.

  • Ask for help and support from family and friends and join a support group.
  • Express what you are feeling and don't keep it bottled up.
  • Accept that some things are beyond your control.
  • Avoid making major decisions - your judgment may be off kilter and changes could increase your stress levels.
  • Give yourself the time and space to grieve. By doing so, you are able to mourn properly and avoid problems in the future.

Remember to keep in touch with your doctor. If you are having sleeping problems, your doctor may prescribe sleeping tablets or may refer you to a therapist if you feel the need for more help to cope with living with Lupus.

You can live with Lupus. Granted your lifestyle is going to change greatly, but by making a few compromises and a few realizations, you can enjoy life again.

© September 2002 Brenda “Rion” Sewell

Lupus and Depression
Lupus and Emotions

Contact the Lupus Foundation of America or the local Chapter that serves your area for more information about lupus, or the programs and services the LFA offers including support group information and physician referral.

Lupus Foundation of America., Inc.
1300 Piccard Drive, Suite 200
Rockville, MD 20850-4303
301-670-9292  800-558-0121

Searching for  ways to deal with the depression, the frustrations, the questions about lupus, I joined a support group online.  LUPIES has been a wonderful gift.  I have learned more from the information I found on the support web site from other sufferers of Lupus than I did from my doctor.
Thank you fellow Lupies!    May your days be pain free!

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All literary works and original artwork by Rion on this page,
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© 1998 - 2004 Brenda "Rion" Sewell

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