A member from a fellow community asked: What to do when depression sets in? You can almost imagine the outpouring of support from everyone.
It dawned on me: What advise can we offer a family faced with a rare disease? The challenge of caring for rare disease patients in the family can be a daunting one.
I found that the issue is manifold. I would like to chip in my penny by discussing this in a series of blogs. First, let’s talk about assessing the situation together at the very onset of the illness.
A Candid Assessment
Disruption of the normal routine of life, no matter what the cause, is always difficult. This is especially true if it is caused by prolonged sickness. Even a short-term illness calls for adjustments, concessions, and sacrifices. Healthy family members may have to keep quiet to allow the sick one to get rest. They may have to pass on certain activities. A caring family is usually ready to do what is needed. Besides, each family member would hope for similar consideration if he or she were to get sick.
What, though, if the illness is very serious and the disruptions are drastic and prolonged? A common initial reaction is pity—sadness that a loved one is suffering so much. However, pity may be followed by other reactions. As family members find themselves very much affected and their freedoms limited by the sickness of one person, they may come to feel resentment. They may wonder: “Why does this have to happen to me?”
Recognize that such feelings exist. That is the all important first step. Many feel frustrated, even angry, when their life is radically changed by someone else’s sickness. Still, a caring family member who reasons on the situation should realize eventually that this affords him an opportunity to demonstrate the genuineness of his love. Rather than allow negative feelings to dominate, therefore, it is essential that we do our best to get them under control. Some avail of therapy and joins support groups to learn how to deal with the ever shifting emotions.
Facing these changes successfully may even result in closer relationships and intimacy once you look back from a later point in life with pride and appreciation on how the family came through a difficult challenge.
Get as much information available on the condition of the patient so that adjustments can be made accordingly and in time. Know how the illness may progress, and what steps can be made should the condition worsen. Maximize every visit to the doctor. Some find it helpful to list down questions that arise and make sure to ask it during the visit.
I hope that this initial discussion was of help to everyone. Do you feel that your personal experience exemplifies the above? I look forward to your comments and input.
Next week I will share with you how attitude likewise plays a part in a family’s successful handling of a serious sickness of a member and how setting priorities also helps.