This chapter is primarily written for family members or friends of people with body dysmorphic disorder (BDD), although much of it is also relevant to people with other body image problems.
One of the practical things a friend or relative can do is become an ally for the individual in overcoming their BDD, if he or she wishes you to. If a child has BDD, parents must be involved in therapy, but teenagers should be given a choice as to whether or not their parent is involved.
In cognitive behavioral therapy (CBT), the person who acts as an ally in this way is called a ‘co-therapist’. Such allies can be of enormous value and can help in numerous ways. If you decide to be an ally or co-therapist for a relative with BDD, it will make sense for both of you to work through this book, and review it together as you progress. However, be aware that your relative may come to feel that you are over-involved with monitoring their homework or progress. If this happens, you will need to negotiate your degree of involvement.
If your relative is in therapy and you think they are not being honest with the therapist, it is usually possible to inform the therapist of your observations without the therapist breaching confidentiality. Ultimately, though, it’s up to the person with BDD to do their homework and to be honest with their therapist about their difficulties. As their ally, you can gently remind them that having setbacks is part of overcoming BDD.
If you are a relative or a friend – or, especially, partner – of someone with BDD, get to know as much as you can about the condition (for example, by reading books like this), the common behaviors and the treatment. It’s worth emphasizing three key points:
• However odd the behaviors may seem, they are just part of BDD. BDD is not a sign of madness – it’s simply a disorder, of the kind that can affect many people at some stage in their life. BDD is not ‘bad’ behavior done to annoy you.
• If you have a relative or partner with BDD, it’s still important to set consistent boundaries with behaviors that are unrelated to BDD, and to problem-solve BDD behavior where it impinges on your family life (e.g. the length of time the person spends in the bathroom when everyone is getting ready in the morning).
• BDD is not something that can be easily stopped. It will take time, commitment, and the right guidance to improve everyone’s quality of life. Each person needs to overcome his or her problems at his or her own pace, and this may be a lengthy process. Avoid comparing your relative or friend with other individuals with (or, indeed, without) a mental health problem.
No one should be blamed for BDD – it’s not the fault of the person who has it, and nor is it your fault as a relative. Hence there is no need to feel guilty for ‘causing’ BDD, even if there is a possible genetic link. If you start blaming your genes then you can go all the way back to Adam and Eve!
Encourage your relative with BDD to try out the principles explained in this book, and to seek professional help with therapy or medication if they need it. Support them in either or both routes, and do everything you can to help them change. This means:
• helping them to understand and define their problems clearly
• if they want you to, being an ally as described above
• encouraging them to persist with their treatment, and
• praising improvement, however small.
Families should not try to adapt their ways of doing things to accommodate a relative’s worries. Don’t put family life on hold. Accept that BDD may complicate family life, but get on with it anyway, and encourage your relative to maintain as normal a lifestyle as possible:
• Don’t take on their responsibilities (unless of course you are a parent of a child).
• Don’t make excuses for them (e.g. about their being late for work or for an appointment).
• Don’t collaborate in trying to find ‘magic solutions’, such as cutting details about cosmetic surgery out of the paper or offering to pay for surgery or provide a loan.
• If necessary, compromise in the short term in the way we have described, but draw the line when new avoidance behaviors and safety behaviors start.
If you have been participating in your relative’s BDD up to now, start to find ways of changing this:
• If the person is in therapy, ask your relative if you can see the therapist with him or her and discuss a program of reducing your involvement in your relative’s BDD.
• If the person is not in therapy, try to negotiate a program of gradual withdrawal from the person’s safety and avoidance behavior before you implement it.
• Make sure that you communicate that you are changing your involvement in order to help rather than punish.
• Practise saying ‘No’ or ‘No, thank you’ to requests for reassurance or checking.
• Help your relative to see the downside of your participating in avoidance and safety behaviors and the effect on your relationship. Highlight how long the effect of the reassurance lasts for and what the effect is on their doubts.
Anticipate how you will deal with your relative becoming stressed or irritated by your new way of responding and have a plan that you can both agree upon if he or she becomes aggressive or angry. Where aggression is a problem, always ensure your own safety, if necessary by calling the police. You may have to be very persistent until requests for reassurance or rituals stop happening, because if you respond just once, it immediately becomes more likely that they will involve you again.
Remember:
• Individuals with BDD will not come to any harm as a result of anxiety, though they may be distressed in the short term.
• Accommodating rituals and avoidance means that you are helping to fuel BDD in the long term – and you are not taking care of yourself. It may feel as if you’re protecting yourself from stress and helping someone with BDD, but the effect is the opposite.
What is good for the family is good for the person with BDD, and this can only occur when no one else engages in the BDD. A family that is all pulling together can provide better support for your relative with BDD. Its members can also better support each other and solve problems more efficiently.
You and your relative both need to see BDD, and not the individual experiencing it, as your shared enemy. Approach the problem as a team, working together. As your relative improves, see yourself as a coach shouting encouragement from the sidelines, or cheerleading, as you become less involved. Enthusiasm, understanding and general support are the best help you can provide.
Maintain your own interests and have your own sources of support. At times you may need time out (or respite care). When this happens, tell your relative that you need a break but have not given up on them, and try to get others to help.
• Feelings such as guilt, sadness or anger are normal in those caring for a relative with any long-term disability.
• Try not to engage in self-pitying thoughts such as ‘Why me?’ or ‘Poor me, I don’t deserve to have BDD in the family.’ These will only make you feel worse and feed another vicious circle.
• Try to detach yourself emotionally from your relative’s BDD and take it less personally.
• If you’re not coping emotionally or it is affecting other areas of your life, seek help. There might be a local caregivers’ group or, even better, a group for caregivers of individuals with BDD. Alternatively, see your family doctor for a referral or go directly to a therapist. You might also find it helpful to read our book Manage Your Mood, published by Robinson.
We’ve met many family members who seem to believe that anxiety and discomfort should be avoided, and have even been critical of CBT because it requires the tolerance of discomfort. In some cases this is entirely understandable, given the profound distress that the individual with BDD, whom they care about, experiences as they wrestle with a doubt or intrusive thought.
Some families share ‘rules’ about emotions that can be unhelpful in overcoming BDD. For example:
• Emotions are a sign of weakness and should be controlled.
• If something upsets you, don’t think about it.
• Being upset is terrible, and it’s important to do something to make yourself feel better as soon as possible.
• If something bothers you, do something to take your mind off it.
• Be careful about showing that you feel upset to other people, or they might use it against you.
• If you get too upset it could make you ill, so it’s best to avoid intense emotions.
These rules are unhelpful as they interfere in someone’s ability to recover from BDD. They are sometimes explicitly taught; at other times they are taught by the way a family or person within that family behaves.
If you think you or your family share any rules like these, which might make experiencing emotions even harder, try to communicate to the person with BDD the message that you are confident that feeling short-term distress is a sensible and helpful thing to do when overcoming BDD.
It’s likely that on some days your relative will be better able to deal with symptoms than on others. It will be harder for both of you at certain times – for example, when either of you is feeling tired or stressed by other problems. Setbacks are to be expected, and to a certain extent can be planned for. Taking time out can be helpful at these points.
Each person with BDD will need to overcome their problems at their own pace, even though this may be a lengthy process. It’s entirely normal to experience setbacks along the road to recovery. Don’t lose heart. You can help by staying optimistic and encouraging them to keep trying. You probably won’t see the hundred times that BDD doesn’t get in the way, but you are bound to notice the time that it does!
People with BDD are often aware of the humorous aspects of their worries. BDD support groups are frequently filled with laughter, and many people are relieved at not having to take things too seriously. Such mirth can be used to help people with BDD distance themselves from the condition and their catastrophic thoughts. However, it is very important that friends and relatives resist any temptation to mock the person with BDD for their symptoms, as this may cause additional stress, shame and embarrassment.
Make sure that you communicate, both with your relative who has BDD and with everyone else in your family.
• Remember that you may need help and support yourself.
• Make sure that you continue to do things you enjoy and have people to talk to about your own feelings and concerns.
• Eventually, you may decide that, for the sake of your own mental health, you can’t carry on caring for your relative with BDD. In that case you’ll need to communicate as a family and get help from the local services.
What if your relative has BDD but doesn’t appear to want help from a mental health professional? This can be a very trying situation, as the following case study makes clear.
One of us had a telephone call from Sarah. She told us that she and her husband were desperate for help for their daughter, who was now aged 23 and still living with them. She was quite attractive but had suffered from BDD since the age of about 12 but it had become worse when she was at college. She had dropped out of her degree course and now rarely went out. She had refused any help from her family doctor or local mental health services. She spent several hours a day in various checking rituals in the bathroom and skin-picking. She avoided going out unless it was late at night. She tended to neglect herself. Her sleep/wake cycle was reversed so that she would spend much of the night awake watching TV or using the Internet/computer. Their daughter did not accept that she had BDD and did not believe that she had a mental health problem that needed help; she would get a job and get on with her life when she felt she looked right.
Sarah and her husband understandably felt helpless and desperate in the face of their daughter’s plight. They found some benefit in attending a support group for people with BDD, which gave them a welcome opportunity to get some support and stop blaming themselves. They began to realize that they couldn’t take responsibility for their daughter’s behavior. They also came to realize that their daughter’s BDD was dominating their household and that they were talking about little else. They continued to encourage her to seek help and reduce her avoidance and rituals, but also began to try harder to talk to Sarah about things that weren’t related to her BDD.
There is a significant minority of individuals with severe and chronic BDD who are hidden in the community. Many are cared for by ageing parents who become increasingly concerned at the effect BDD is having on their son or daughter. As professionals, we find this is one of the most difficult situations in which to help. We recognize the limited influence we have on someone with BDD. No one can make someone with BDD change.
We would normally recommend that Sarah tries to engage her daughter in therapy by asking for a home visit by a psychiatrist and subsequent visits by a qualified CBT therapist, who would focus on what Sarah’s daughter really wants to do in life and her real values, which are being obscured by the BDD. If this were not possible, the therapist could try to engage her over the telephone. An exceptional mental health team with therapists familiar with BDD may provide this service. However, the success of any treatment will still depend on the cooperation of the person with BDD, and ultimately on their willingness to see a therapist and do the homework.
When you have an adult with chronic BDD in your home, it can be difficult to get them to accept help. The road ahead may be a long and hard one, and you’ll need to look after yourself as well as your child. We offered some suggestions on how to do this in the ‘General guidelines for relatives’ earlier in this chapter.
If your relative insists that BDD is having hardly any effect on their life, there are various things you can do to encourage them to face up to the problem and seek help.
• what their real feelings are about having such a problem (shame, for example, can make people very reluctant to acknowledge it; see Chapter 4 in this book)
• what they fear and/or
• what doubts they have about therapy or change.
Ensure that as a family, or if possible as a wider group, including friends, you take a consistent approach, and that nobody is accommodating the BDD. Agree upon your message, and if necessary talk to the individual both within the family (or wider) group and with a mental health professional.
One person in the group might draw up, along with the relative with BDD, a list of costs (or disadvantages) and benefits (advantages) of:
1. staying the way they are, or
2. engaging in a program of therapy.
A blank copy of the cost–benefit analysis form is included in Appendix 2, on page 435. Each of the costs and benefits may be divided into those for the ‘self’ and those for ‘others’. Even if your relative sees few disadvantages in staying the same, you can emphasize the costs of BDD to others in the family and the benefits to him or her self in the long term. Do go on emphasizing that you will still provide support and help during therapy. If your relative finally agrees to seek help, discuss the time-frame within which this can be done, and the process it will involve.
If your relative continues to refuse help and you decide that you cannot go on any longer with things the way they are, you will need to explore your own options, such as finding your relative independent living arrangements by getting help from your local mental health services.
Local mental health services do not always respond positively to requests for help for a relative with BDD who does not want help. The main priority for a psychiatrist in public health services is patients with ‘severe mental illness’, especially those who may be suicidal or a danger to the community. UK and US mental health law allows a patient to be detained in hospital against their will in certain circumstances; but in the absence of a risk to themselves or self-neglect, patients with BDD are unlikely to be admitted to a hospital and would, in any case, be unlikely to benefit much from admission to the average acute psychiatric ward. Short-term in-patient care in a national specialist unit where the staff are used to dealing with BDD patients and regular CBT is available, is more likely to be helpful. In others a trial of medication can be given against a person’s will and this might be helpful to some people.
It must be emphasized, though, that CBT is powerless without the cooperation of a person with BDD. It is both unethical and counter-productive to forcibly expose someone to feared situations or activities. Therapists will encourage and challenge a patient, but would never force exposure or spring something on their patient unannounced. Nor should you ever do this to a relative with BDD. A program of CBT has to be followed voluntarily, and the motivation has to come from the patient, if it is to be ethical and effective.
Many people who successfully overcome their BDD have made previous unsuccessful attempts, and some have even been diagnosed as ‘untreatable’. This book is not the place to discuss the practical and ethical aspects of deciding under what circumstances a person should be considered unable to recover from BDD. What is clear, however, is that many people with BDD (and some less well-informed healthcare practitioners) arrive at the ‘untreatable’ conclusion much too quickly. On the whole, the best advice you can give to your relative with BDD is to keep fighting to change the BDD, rather than fighting to change one’s appearance and to hide from the world.
A very few individuals with BDD are beyond the skills of mental health professionals and the provisions of mental health law, and cannot be engaged in treatment. Such individuals often have values that have become idealized and central to the person’s identity. Such values are more likely to be seen in those who cannot bear anxiety and strenuously avoid situations that may provoke any distress.
They feel that they must have a high degree of control so that everything has to be done their way and at a time and speed that suits them. In this case, as a relative, we would advise you to seek help for yourself from your family doctor. It’s perfectly acceptable for your mental health, if you decide you can’t carry on caring for your relative, to ask local services to find suitable independent living arrangements for them.
When your relative is recovering, you might expect everything to go back to how it used to be. However, this may not be how it happens at all, and the family might need to go through various stages of adjustment. This is normal. Each person will adjust and recover at a different rate. You might want to see BDD as something that is ‘over’ or ‘finished’, but remember that setbacks are part of the process.
In summary, BDD can have a profound effect on the person with BDD and on the person or people who looks after them. However, though the situation may sometimes be difficult, it is never hopeless, and there is a lot that you can do as a team to help each other.