It can often by very difficult for individuals to come to terms with their diagnosis of CADASIL. After one receives a confirmed diagnosis, it takes time to understand and accept it, due to the life changing nature of the disease. This is often referred to as ‘adjustment’. The adjustment process takes place at different rates for different people. It can take a few years or more to fully accept the diagnosis and this is dependent on numerous interacting factors including;
- previous experience of the disease (e.g. through seeing a relative with the same condition)
- an individual’s symptoms (in terms of the number and severity of the symptoms)
- the individual’s coping mechanisms
- the individual’s understanding of their illness
- their support network
There are many other factors that might also impact the adjustment process and these will be different according to each individual person. Research literature also shows that people who have to live with chronic conditions (such as CADASIL) often have to make ongoing adjustments as the disease progresses.
Psychological difficulties are common in CADASIL. This includes depression and sometimes anxiety. In some cases, mood disturbances occur directly as a result of the disease (for instance, the area of the brain that controls emotions can be affected by the disease). In other cases, mood disturbances can occur when an individual experiences many unpleasant symptoms and a reduced quality of life. There are also cases where an individual may struggle to cope with the diagnosis. It is generally thought that mood disturbances are the result of a combination of factors such as those mentioned above.
When people with CADASIL become depressed, they may notice the following signs;
- feeling sad or low for most of the day
- changes in appetite (either losing interest in food and eating less or eating a lot more than usual)
- changes in sleep patterns (sleeping for long periods of time and struggling to get out of bed, sleeping less than usual, having restlessness nights, having trouble falling off to sleep or waking up several times during the night)
- feeling irritable
- losing interest in activities
In some cases, anti-depressant medication may be helpful in treating the mood problems and improve quality of life. If you have concerns about your mood it is important to talk to your doctor about this. It is also possible to manage these feelings through talking therapy. In such instance, your doctor can refer you to a Psychologist or Counsellor.
If people with CADASIL become anxious, they may notice the following signs;
- feeling very worried most of the day
- being restless or feeling ‘on edge’
- becoming tired very quickly
- Having muscle tension
In some cases, anti-anxiety medication may be helpful. It is important to talk to your doctor if you have concerns about this. It is also possible to manage these anxious feelings through relaxation exercises or talking therapy. Your doctor can refer you to a Psychologist or Counsellor for this and they can give you more advice about this.