You are here: Functional Disorders For Patients & Their families If you are a family member

If you are a family member

Most diseases affect a patient's surroundings. This is also the case with functional disorders. A functional disorder will often pass on its own, but sometimes treatment is necessary. In some cases, the disorder may become chronic.

Being a close relative of someone suffering from a functional disorder may be a challenge. As a relative, the first thing you can do is to seek information about the illness. The more you know about functional disorders, the better you are able to understand the person who is affected. On this site, you will find a lot of information. Furthermore, it may be a good idea to attend the patient when he or she is seeing the doctor, whenever it is possible.

Some of the things that may be difficult to handle when you are a close relative could be:

  • Loss of functional capacity

Someone with a functional disorder has not always been ill. It is often a person who has been very active and energetic. Some close relatives find it hard to witness that e.g. the person they married, who has always been able to manage a lot of things, suddenly can do almost nothing at all. Some react with grief. They become very sad and feel that they have lost the person that they loved. Others may react with anger. They are annoyed and feel that the person should simply get himself together and be like he used to be.

It is important that close relatives first of all accept the disorder. Nobody gets a functional disorder on purpose, and you cannot blame it on anyone. The relatives will often have to take on some of the duties and obligations that the patient had. That can be a huge burden to the family. Therefore, it is important to try to find a balance where the patient is relieved, but without the relatives taking on more than they can handle.

In some cases many of a patient's obligations will be put on just one family member. It is very important that this person shows himself/herself consideration. Are there other relatives, friends or other people from the patient's network who could step in and help? Should you spend your money on help with cleaning the house or other practical matters? Could the tasks be better organised?

  • A fluctuating level of activity

People with functional disorders often have a very fluctuating level of activity. It may be difficult to understand that someone who has a lot of energy one day suddenly the next day can do almost nothing at all. Some relatives may even think that the patient is lying or exaggerating. However, the fluctuating level of activity is actually part of the disease.

People with functional disorders should not be pushed beyond their own boundaries nor be over-protected. It may sometimes be advisable for a relative to help stop the activities. In other cases. it may be necessary to support the patient in increasing the number of activities.

The best level of activity is a constant level, i.e. that you are exposed to the same amount of stress or strain every day. When you have found a suitable level, you can gradually increase the activity level, but not to an extent where you get a relapse.

  • Difficulties setting personal boundaries

Many people suffering from functional disorders are bad at setting personal boundaries. They therefore accept activities which they may not be able to handle.

When you are a close relative, you may easily feel let down if that person you used to be able to trust no longer can stick to the agreements you have made.

When you are a relative, it is important to keep in mind that the functional disorder is worsened when boundaries are crossed. Therefore, you can support the patient in getting better at knowing his or her personal boundaries and not accept more than can be handled.

  • Long-term sick leave

Some patients get so sick that they have to take sick leave. It may be repeated or long-term sick leave. In some families, this affects the household economy. Some relatives may have to work extra hours to maintain the household economy, others will simply have to accept a reduction of it.

Some relatives may react with grief to their changed life situation. Others react with fear of what the future will look like. Some become angry with the sick person. Others are angry with the 'system' and spend a lot of energy on finding people they can blame.

Relatives should spend their energy on things that they can actually help with. Employers, colleagues and social workers usually want to do their best to help. Co-operation is always more advisable than conflict.

  • Numerous medical examinations

Patients with functional disorders are often sent through a range of medical examinations. This is both very time-consuming and exhausting. Relatives may have to take time off from work and follow the patient to medical examinations and interviews. Often you will share a hope that a certain test will come up with an unambiguous result and solution to the many problems. Many relatives also share the uncertainty that arises when waiting for the result. They also share the frustration when once again no answer or solution could be found.

The best possible support is to co-operate with both the patient and the doctors. A lot of scientific research is still being carried out and there are many unanswered questions. It would be easy if a functional disorder could be diagnosed with a single blood test and then treated with a pill. Unfortunately, that's not the way it is. Some relatives say that it has been a relief accepting that functional disorders are complicated and that medical science still does not have the answers to all questions.

  • Bad memory

Many patients with functional disorders experience having a bad memory. This means that they may forget ordinary things such as appointments, what has been said previously, where they have put things etc.

It is important to keep in mind that having a bad memory is part of the disease. Many people with functional disorders will therefore benefit from help to remember important things. As relatives, you can help by reminding the patient of things that he or she needs to remember, or encourage the patient to write things down.

  • Fatigue and lack of energy

To most patients being very tired is the worst thing. It may be the reason for cancelling activities that the patient used to love as e.g. social gatherings, sports, work, leisure activities, attending school boards or some other voluntary work. Some patients are so tired that they cannot handle ordinary household chores such as cleaning the house or doing the laundry.

It is hard on relatives to witness how the patient over and over again cancels get-togethers, birthday parties and other social events. Relatives may also be faced with the dilemma whether or not they should participate in activities without the sick person.

     

 

 

 

 

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Revised 06.08.2013