Significant Others and Lupus
The family member/significant others of the sufferer of a chronic illness like lupus, in m ay ways, experience feelings similar to that that of the primary sufferer. They not only want to give support and help the sufferer deal with his/her feelings, they also need to deal with their own feelings regarding lupus and the impact on their relationship with the sufferer.
Significant others may feel responsible for taking care of the sufferer or helping the patient make decisions. They want to give him/her support but don`t know how to or what to say or do.
Feelings of Significant Others
- Concern for the loved one with lupus or other chronic illness
- Confusion about how to deal with the complexities of their illness
- Difficulty understanding why did this happen
- Helplessness - wishing they could have protected their friend/partner or prevented this illness and wanting to fix the situation so that life can get back to "normal"
- Shame - there is something wrong with this person. This shame could lead to feeling a need to distance them from the sufferer, leaving the sufferer feeling isolated, rejected or blamed for being ill, which can be very damaging
- Temporary loss of intimacy with the patient. It may be difficult for the significant other to deal with the disease. Patients have been forced to recognize their own vulnerability, and as a result may find it difficult to trust enough to be close, even when the relationship is strong and nurturing. Intimacy will return with the help of a nurturing, patient partner
- Feeling out of control of their life. The illness has changed the significant others; nothing feels the same. feeling out of control is a normal response to a critical incident; control will return with time
- Although a natural reaction, wanting to strike out (anger) but not knowing who or what to blame
- Frustration with professional systems
- Anger. Anger can be a healthy response to an illness and can be directed at the disease or the systems that don`t work. Although anger is appropriate, acting out violently is not appropriate. Significant others need to understand the venting anger on the patient is counter productive. Difficutly expressing their own feelings, difficulty asking for help - may feel that because they are not the primary sufferer they shouldnt be using patient support systems or thaty they should be able to handle it.
Remember giving support means listening, asking how you can help, encouraging, helping the patient ask for what he/she needs, being sensitive and patient, not trying to "fix" the situation, supporting decisions that allow him/her to regain control over his/her life.
No one aks to be involved in a chronic illness. It is not easy. Significant others are responsible for dealing with and finding support for their feelings regarding the illness and their relationship. A chronic illness like lupus is on-going anad it is a normal reaction to want it "over with". Hurry up and get well messages will only force the patient to stuff feelings, internalizing her/his anger and pain, causing him/her to distance themselves from those that care about them, causing them to feel further isolated.
A disruption of routine, even without illness is anxiety-producing. Recognize that you and the patient may both be in crisis. Prioritize issues that need immediate attention and let go of the decision that can wait. All patients blame themselves to a degree for an incident or for being unable to prevent it. reassure the patient many times that it wasnt her/his fault - that he/she did the best they could, that they did nothing to bring this upon themselves.
Your own feelings, personality or your role with the patient may make it difficult to ask for help. it is extremely important for you to talk about lupus, and its affect on you with a supportive person, who has knowledge or sensitivity about the issues surrounding lupus, and your relationship to the patient.
You are a caregiver if you give basic care to a person who has a chronic illness like lupus. If you are a caregiver you might be doing the following things for someone you care about who has lupus:
- Lifting
- Bathing, dressing, feeding, cooking and shopping
- Paying the bills
- Running errands
- Giving medicine
- Keeping him/her company
- Providing emotional support
- Taking him/her to doctors visits
- Keeping records of symptoms, doctor visits, medications and more
Common Signs of Caregiver Stress Include the Following
- Feeling sad or moody
- Crying more often than you used to
- Having low energy levels
- Feeling like you dont have any time to yourself
- Having trouble sleeping, or not wanting to get out of bed in the morning
- Having trouble eating, or eating too much
- Seeing friends or relatives less often than you used to
- Losing interest in your hobbies or the things ou used to do with friends or family
- Feeling angry at the person you are caring for or at other people or situations
If you are feeling overwhelmed and stressed these feelings are not wrong or strange. Care giving can be very stressful. Because being a caregiver is hard, some doctors think of caregivers as "hidden patients". If you dont take care of yourself and stay well, you wont be able to help anyone else.
Talk with your family doctor about your feelings. Stay in touch with yoru feelings and family members. Ask them for help in giving care. Asking for help doesnt mean you are a failure. Look for help in your community. You may start asking your church or synagogue if they have services or volunteers who can help you. You can also ask for help from support organizations like the Lupus Alliance.
Source: Significant Others: A resource guide for care givers, from the Lupus Alliance Get Connected Series, LAA Michigan/Indiana Affiliate.