{"id":6840,"date":"2023-10-05T18:15:25","date_gmt":"2023-10-05T18:15:25","guid":{"rendered":"https:\/\/www.nf-patients.eu\/magazine\/?p=6840"},"modified":"2023-10-11T10:01:32","modified_gmt":"2023-10-11T10:01:32","slug":"interview-with-nf-psychologist-andre-rietman","status":"publish","type":"post","link":"https:\/\/www.nf-patients.eu\/magazine\/interview-with-nf-psychologist-andre-rietman\/","title":{"rendered":"Interview with NF psychologist Andr\u00e9 Rietman"},"content":{"rendered":"\n

\u201cIt\u2019s all about coping\u201d<\/strong><\/p>\n\n\n\n

Have you ever wondered what advice a professional psychologist that specialized on Neurofibromatosis would give to NF patients and their parents? We recently had an interview with Dr. Andr\u00e9 Rietman, a child psychologist from the Netherlands who specialized on NF1. He talked about what to do after the initial diagnosis of NF, the insecurity revolving around the disease and different ways of coping.<\/p>\n\n\n\n

\"Andre<\/a>
Dr. Andr\u00e9 Rietman has over 25 years of experience in working as a psychologist.<\/figcaption><\/figure>\n\n\n\n

Good morning Mr. Rietman, thank you for joining us today! First of all, we were curious about one thing: What advice would you give to patients who were diagnosed with NF1? In addition, what might be helpful for their parents?<\/strong><\/p>\n\n\n\n

Thank you for inviting me. First, getting the diagnosis is a very individual situation for everyone, so each person might react differently. Mainly, it\u2019s okay to be sad or disappointed or anything else. It\u2019s important to give room to those emotions, let them out and process them, preferably together with other people in your family or with friends. Also, not looking too far into the future is important after the diagnosis. Parents naturally worry about the future of their child. \u201cWill my kid be able to learn and go to a normal school? Will my kid be able to do sports, play an instrument, lead an independent life?\u201d Those are questions that you can\u2019t answer or predict when children are still very young. Neurofibromatosis is a disease that looks different on anybody, all symptoms are very individual. I would say taking it day by day is a good start.<\/p>\n\n\n\n

Furthermore, I would advise parents not to use Google as their main source of information when looking for information about NF. Google usually shows pictures of the worst cases and that adds to anxiety among parents of an affected child. Instead, try to read information on the websites of patient organisations. Most of the time, this information has passed some kind of quality control. You may also try to read scientific papers about Neurofibromatosis. Application of that information to yourself or to your child may however be challenging. If you\u2019re unsure or don\u2019t understand certain information, it\u2019s good to ask a specialist to explain or interpret that information.<\/p>\n\n\n\n

The next step could be to connect with patient organisations in your home country or with other large organisations in other countries. They usually have more experience and especially age-appropriate and reliable information about the disease such as specific leaflets for parents and some directed at affected children. Patient organisations also allow you to connect with other families who experience the same as you do and may be able to support you or to see how others deal with it and what you can learn from them.<\/p>\n\n\n\n

There is a lot of insecurity and uncertainty revolving around NF because, as mentioned above, symptoms manifest themselves in different ways. What is a good strategy to deal with this insecurity in everyday life?<\/strong><\/p>\n\n\n\n

it\u2019s mainly about uncertainty: not knowing what NF is, what the prognosis is and how things will be in the future. NF patients and their families are surrounded by uncertainty all the time. The moment you hear the word \u2018tumour\u2019, you think about cancer and you think about the uncertainty about malignancy and survival. But mainly, there are two big worries that parents of a child with NF have: The first one is whether existing symptoms may get worse. So for example, will a plexiform neurofibroma turn into a malignant tumour or not? This can\u2019t be answered or predicted by doctors. You can only look at chances, percentages, or similar cases. The second big worry is related to mental health: 50% of children with NF1 have problems with motor-coordination, about 10% have a chance of developing autism and about 30% might develop ADHD. This is an extra stressor that affects the patient\u2019s life significantly. However, there is no easy way to predict whether a child will develop these mental health issues or not. In case of doubt, I would advise finding a child psychologist or psychiatrist to rate the severity of problems in learning or behavior.<\/p>\n\n\n\n

Talking about strategy, parents and patients all handle the disease differently, some talk a lot about it, while others try to ignore it. What coping strategy would you recommend?<\/strong><\/p>\n\n\n\n

This is an essential question. Ultimately, it\u2019s all about coping. I always make a distinction between healthy and maladaptive coping. Maladaptive coping strategies are for example getting really angry, avoiding, downplaying or catastrophizing. Neither will help you in the long run but in the present, they are very tempting. Catastrophizing would be for example if the patient started believing that he or she will develop every single symptom there is of NF1. Those thoughts are not necessarily the bad thing about it. <\/strong>The catastrophe is that you put your mind in a certain position that you will always think that you will be the one getting the worst. It\u2019s not a self-fulfilling prophecy but it doesn\u2019t make you happy either.<\/p>\n\n\n\n

Avoid talking about the disease, not telling the child or downplaying NF is also a risky strategy. It can even become dangerous for the patient if the parents don\u2019t make enough appointments with a medical doctor (MD) because they don\u2019t want to make too big of a deal out of it. Of course, sometimes it\u2019s okay to not talk about the disease daily or postpone a talk if there are other more important things or if the parents don\u2019t have the energy for it at that time. But sooner or later, the disease will always need to be addressed.<\/p>\n\n\n\n

Sometimes the patient or the parents keep on having maladaptive thoughts about the disease or just in general. This is called \u201cruminating\u201d: When a bad thought keeps coming back and you keep chewing on it. When someone is having recurrent negative thoughts or negative reactions to life events, it may be a predictor for developing a mood disorder like a depression. In this case, it\u2019s best to do something about it and to seek professional help. As an example: there is also a therapy called Acceptance and commitment therapy (ACT) that helps people to deal with maladaptive thoughts. In ACT, you accept the thoughts as being there (you could think that you will be getting all the symptoms, but this is only a thought and not a truth), and you can let your thoughts go. Strategies like this are shown to be much more helpful than just suppressing thoughts or pretending to not have them. Sometimes, going to therapy is advisable for patients and their parents, especially when there seem to be more mental health issues. My advice is to look for a psychologist or psychiatrist that is near you and that your health insurance can cover. When people look for other, more adaptive coping, they may think about finding social support, expressing emotions, finding distractions or relaxing activities. Mindfulness, yoga or breathing techniques may help, but also a walk in nature can do the trick.<\/p>\n\n\n\n

Lastly, what advice would you give to NF patients and their parents?<\/strong><\/p>\n\n\n\n

One thing: Be kind to yourself and your partner or family. You don\u2019t need to do everything by yourself, it helps to join others that go through this experience or have been through similar experiences. And for the parents, make sure somebody cares for you because if you care for someone else, someone needs to be there for you, too.<\/p>\n\n\n\n

Thank you so much for the interview!<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

\u201cIt\u2019s all about coping\u201d Have you ever wondered what advice a professional psychologist that specialized on Neurofibromatosis would give to NF patients and their parents? We recently had an interview with Dr. Andr\u00e9 Rietman, a child psychologist from the Netherlands who specialized on NF1. He talked about what to do after the initial diagnosis of NF, the insecurity revolving around the disease and different ways of coping. Good morning Mr. Rietman, thank you for joining us today! First of all, we were curious about one thing: What advice would you give to patients who were diagnosed with NF1? In addition,\u2026<\/p>\n","protected":false},"author":7,"featured_media":7027,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"advgb_blocks_editor_width":"","advgb_blocks_columns_visual_guide":""},"categories":[1],"tags":[],"acf":[],"author_meta":{"display_name":"magazineditor","author_link":"https:\/\/www.nf-patients.eu\/magazine\/author\/magazineditor\/"},"featured_img":"https:\/\/www.nf-patients.eu\/magazine\/wp-content\/uploads\/2023\/10\/nf-3-300x169.png","coauthors":[],"tax_additional":{"categories":{"linked":["Uncategorized<\/a>"],"unlinked":["Uncategorized<\/span>"]}},"comment_count":"0","relative_dates":{"created":"Posted 3 years ago","modified":"Updated 2 years ago"},"absolute_dates":{"created":"Posted on 05\/10\/2023","modified":"Updated on 11\/10\/2023"},"absolute_dates_time":{"created":"Posted on 05\/10\/2023 18:15","modified":"Updated on 11\/10\/2023 10:01"},"featured_img_caption":"","series_order":"","_links":{"self":[{"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/posts\/6840"}],"collection":[{"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/comments?post=6840"}],"version-history":[{"count":10,"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/posts\/6840\/revisions"}],"predecessor-version":[{"id":7034,"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/posts\/6840\/revisions\/7034"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/media\/7027"}],"wp:attachment":[{"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/media?parent=6840"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/categories?post=6840"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.nf-patients.eu\/magazine\/wp-json\/wp\/v2\/tags?post=6840"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}