{"id":2711,"date":"2024-05-07T11:49:04","date_gmt":"2024-05-07T10:49:04","guid":{"rendered":"https:\/\/www.rareminds.org\/?page_id=2711"},"modified":"2026-08-10T16:41:08","modified_gmt":"2026-08-10T15:41:08","slug":"extended-family-and-friends","status":"publish","type":"page","link":"https:\/\/www.rareminds.org\/nl\/wellbeing-hub\/relationships\/extended-family-and-friends\/","title":{"rendered":"Uitgebreide familie en vrienden"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; custom_padding_last_edited=&#8221;on|desktop&#8221; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; use_background_color_gradient=&#8221;on&#8221; background_color_gradient_direction=&#8221;90deg&#8221; background_color_gradient_stops=&#8221;#ffffff 70%|gcid-cda4ad62-552d-4861-ac19-bc0028373e46 73%&#8221; custom_margin=&#8221;0px||||false|false&#8221; custom_padding=&#8221;0px|5vw|0px||false|false&#8221; custom_padding_tablet=&#8221;||0px||false|false&#8221; custom_padding_phone=&#8221;||0px||false|false&#8221; 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inner_max_width_tablet=&#8221;&#8221; inner_max_width_phone=&#8221;&#8221; inner_max_width_last_edited=&#8221;on|tablet&#8221; custom_padding=&#8221;24px|0px||0px|false|false&#8221; background_last_edited=&#8221;on|desktop&#8221; use_background_color_gradient_tablet=&#8221;off&#8221; use_background_color_gradient_phone=&#8221;off&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-cda4ad62-552d-4861-ac19-bc0028373e46%22:%91%22background_color%22,%22background_color_gradient_stops%22%93}&#8221;][et_pb_column type=&#8221;3_4&#8243; specialty_columns=&#8221;3&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_row_inner _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; custom_margin=&#8221;||25px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Some families feel closer as a result of a diagnosis. But family relationships and friendships can often be complicated. This can include how everyone responds to the emotional impact of living with a rare condition.\u00a0<\/p>\n<p>Some people may also offer up advice or suggestions which are not relevant to you (or your situation). These may not always be based on much understanding of you, your rare condition or how it impacts on your life. This can feel frustrating and bewildering.<\/p>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Your wider family<\/h2>\n<p>Families are all different in how they deal with difficult or unusual situations, or how openly they talk about difficult things.<\/p>\n<p>This includes issues around:<\/p>\n<ul>\n<li>physical and mental health<\/li>\n<li>relationships<\/li>\n<li>difference<\/li>\n<\/ul>\n<p>You or your extended family may not have had much experience with healthcare, disabilities or differences before. Or maybe you have had a lot of health problems in your family generally, perhaps as a result of a genetic condition that has only recently been diagnosed.<\/p>\n<p><strong>For some families, a rare condition is talked about quite openly. In others, it may be hardly talked about.<\/strong><\/p>\n<p>The diagnosis of a genetic condition can raise a lot of difficult feelings in families. Not everyone may want to deal with them in the same way, and feelings of guilt or anger can sometimes make it harder to talk about them. You might all hold different views about things like genetic testing, or related issues like family planning.<\/p>\n<h5>How to open up conversations<\/h5>\n<p>In the early days of a diagnosis, bear in mind that everyone will respond (and cope) in their own way as they come to terms with the information.<\/p>\n<p>After the initial shock of a diagnosis has passed, it can become easier to talk about together even if it was difficult originally.<\/p>\n<p>Providing information (like from a rare condition organisation) about your condition, or leaving it laying around at home for when family visit, can help open up conversations &#8211; particularly if you say it would mean a lot to you if they read it.<\/p>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Friendships<\/h2>\n<p>Some friends can be a great source of support. Often friends are the \u2018family we choose\u2019.<\/p>\n<p>Other friends may find what you or your family are coping with too difficult to understand or face.<\/p>\n<p>Some people can be very supportive in the early days of a diagnosis, but find it hard to understand the \u2018stress and strain\u2019 of how a rare condition can impact over time. They may even \u2018forget\u2019 about it, particularly if your condition is less visible.<\/p>\n<p>When people make (often well intentioned) suggestions about how you \u2018should\u2019 deal with a situation, or talk to you in a way that shows their lack of understanding, it can feel very upsetting.<\/p>\n<blockquote>\n<p>When people say \u2018you are looking well\u2019, I always want to say \u2018yeah, but you should see my insides.<\/p>\n<\/blockquote>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Asking for support<\/h2>\n<p>Having even just 1 or 2 people in your life that you feel understood and supported by can make all the difference to how you feel.<\/p>\n<p>Asking for support may not always feel easy, particularly if this has not been a good experience for you in the past.<\/p>\n<p>We often hope other people will just \u2018get the hint\u2019 about what we need or want. We then get disappointed when they don&#8217;t!\u00a0<\/p>\n<p>Remember that what is obvious to us, may not be obvious to others. Learning to speak up about what you need and want opens up the possibility that you will be responded to in the way you hope. If you get knocked back, try not to take it personally. Think if there is anyone else you could approach instead and try again.<\/p>\n<p>[\/et_pb_text][et_pb_blurb title=&#8221;Therapist Tip&#8221; image=&#8221;https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/04\/noun-tips-2448957-FBB717.png&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;0517feb2-9fa3-4547-87b5-c8030e5975d4&#8243; link_option_url=&#8221;#&#8221; border_color_all=&#8221;gcid-56bff3fb-e765-4a78-b152-15a836421100&#8243; global_colors_info=&#8221;{%22gcid-56bff3fb-e765-4a78-b152-15a836421100%22:%91%22border_color_all%22,%22border_color_all%22,%22border_color_all%22,%22border_color_all%22%93,%22gcid-9cdde9ee-f44a-4873-b70d-fc2d55a114a2%22:%91%22icon_color%22%93}&#8221; text_font_size_tablet=&#8221;14px&#8221; text_font_size_phone=&#8221;14px&#8221; text_font_size_last_edited=&#8221;on|desktop&#8221;]<\/p>\n<p>Think about what you might find helpful emotionally or practically. Practice asking for it straightforwardly &#8211;\u00a0 \u2018It would really help me if you could look after my daughter after school each Wednesday. Would that be possible?<\/p>\n<p>[\/et_pb_blurb][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Know \u2018who is good for what\u2019<\/h2>\n<h5>Some people are good at practical support, others are better at emotional support.<\/h5>\n<p>Someone may not be very comfortable talking about feelings, but they might be great for running errands. Another friend may always be \u2018up for a chat.\u2019 Try not to muddle up these two sorts of people as this can be very frustrating!<\/p>\n<p>You might have friends or family who are particularly emotionally challenging to be around. They might leave you feeling stressed, or emotionally vulnerable. If possible, limit time spent with them until you are feeling stronger.<\/p>\n<p>If you are someone who doesn\u2019t find making friends easy, or you have lost confidence in friendships (perhaps because of your rare condition), rare condition organisations can be a good place to turn to for building confidence and connections again. Many offer both online groups and face-to-face meet-ups.<\/p>\n<p>[\/et_pb_text][et_pb_blurb title=&#8221;Therapist Tip&#8221; image=&#8221;https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/04\/noun-tips-2448957-FBB717.png&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;0517feb2-9fa3-4547-87b5-c8030e5975d4&#8243; link_option_url=&#8221;#&#8221; border_color_all=&#8221;gcid-56bff3fb-e765-4a78-b152-15a836421100&#8243; global_colors_info=&#8221;{%22gcid-56bff3fb-e765-4a78-b152-15a836421100%22:%91%22border_color_all%22,%22border_color_all%22,%22border_color_all%22,%22border_color_all%22%93,%22gcid-9cdde9ee-f44a-4873-b70d-fc2d55a114a2%22:%91%22icon_color%22%93}&#8221; text_font_size_tablet=&#8221;14px&#8221; text_font_size_phone=&#8221;14px&#8221; text_font_size_last_edited=&#8221;on|desktop&#8221;]<\/p>\n<p>If you find it hard to ask for support, try \u2018reframing\u2019 it to yourself as offering someone the opportunity to feel good about themselves by helping you out!<\/p>\n<p>[\/et_pb_blurb][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][et_pb_column type=&#8221;1_4&#8243; 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header_5_line_height_phone=&#8221;1.5em&#8221; header_5_line_height_last_edited=&#8221;on|phone&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3>Related pages<\/h3>\n<p>[\/et_pb_text][et_pb_blurb title=&#8221;Couples, sex &#038; intimacy&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;default&#8221; header_font=&#8221;|700|||on||||&#8221; header_font_size=&#8221;1em&#8221; header_line_height=&#8221;1.2em&#8221; body_text_color=&#8221;#424242&#8243; body_font_size=&#8221;12px&#8221; body_line_height=&#8221;1.5em&#8221; custom_margin=&#8221;||15px||false|false&#8221; custom_padding=&#8221;10px|15px|10px|15px|false|false&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI2NzIifX0=@&#8221; sticky_limit_bottom=&#8221;body&#8221; custom_css_blurb_title=&#8221;padding-bottom: 5px;&#8221; border_radii=&#8221;on|18px|18px|18px|18px&#8221; global_colors_info=&#8221;{%22gcid-5ef4899f-2d6f-4b0f-8833-d9164fee52ec%22:%91%22background_color__hover%22,%22background_color__hover%22,%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#b4dbc1&#8243; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;]<\/p>\n<p>Being a team, managing difficult feelings, dating with a rare condition<\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;Parenting&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;default&#8221; header_font=&#8221;|700|||on||||&#8221; header_font_size=&#8221;1em&#8221; header_line_height=&#8221;1.2em&#8221; body_text_color=&#8221;#424242&#8243; body_font_size=&#8221;12px&#8221; body_line_height=&#8221;1.5em&#8221; custom_margin=&#8221;||15px||false|false&#8221; custom_padding=&#8221;10px|15px|10px|15px|false|false&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI3MDAifX0=@&#8221; sticky_limit_bottom=&#8221;body&#8221; custom_css_blurb_title=&#8221;padding-bottom: 5px;&#8221; border_radii=&#8221;on|18px|18px|18px|18px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-5ef4899f-2d6f-4b0f-8833-d9164fee52ec%22:%91%22background_color__hover%22,%22background_color__hover%22,%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#b4dbc1&#8243; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;]<\/p>\n<p>Ways to recharge, supporting siblings, coping with difficult behaviours<\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;Extended family &#038; friends&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;default&#8221; header_font=&#8221;|700|||on||||&#8221; 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friends Opening up conversations, asking for support, \u2018who is good for what?\u2019Some families feel closer as a result of a diagnosis. But family relationships and friendships can often be complicated. This can include how everyone responds to the emotional impact of living with a rare condition.\u00a0 Some people may also offer [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":2669,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","_monsterinsights_skip_tracking":false,"footnotes":""},"folder":[35],"class_list":["post-2711","page","type-page","status-publish","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.rareminds.org\/nl\/wp-json\/wp\/v2\/pages\/2711","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.rareminds.org\/nl\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.rareminds.org\/nl\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.rareminds.org\/nl\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.rareminds.org\/nl\/wp-json\/wp\/v2\/comments?post=2711"}],"version-history":[{"count":8,"href":"https:\/\/www.rareminds.org\/nl\/wp-json\/wp\/v2\/pages\/2711\/revisions"}],"predecessor-version":[{"id":6090,"href":"https:\/\/www.rareminds.org\/nl\/wp-json\/wp\/v2\/pages\/2711\/revisions\/6090"}],"up":[{"embeddable":true,"href":"https:\/\/www.rareminds.org\/nl\/wp-json\/wp\/v2\/pages\/2669"}],"wp:attachment":[{"href":"https:\/\/www.rareminds.org\/nl\/wp-json\/wp\/v2\/media?parent=2711"}],"wp:term":[{"taxonomy":"folder","embeddable":true,"href":"https:\/\/www.rareminds.org\/nl\/wp-json\/wp\/v2\/folder?post=2711"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}