{"id":2619,"date":"2024-05-03T10:42:07","date_gmt":"2024-05-03T09:42:07","guid":{"rendered":"https:\/\/www.rareminds.org\/?page_id=2619"},"modified":"2026-08-10T16:35:40","modified_gmt":"2026-08-10T15:35:40","slug":"change-and-loss","status":"publish","type":"page","link":"https:\/\/www.rareminds.org\/nl\/wellbeing-hub\/uncertainty-change-loss\/change-and-loss\/","title":{"rendered":"Verandering en Verlies"},"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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width_phone=&#8221;80%&#8221; width_last_edited=&#8221;on|phone&#8221; custom_margin=&#8221;||0px||false|false&#8221; custom_margin_tablet=&#8221;||||false|false&#8221; custom_margin_phone=&#8221;||||false|false&#8221; custom_margin_last_edited=&#8221;on|phone&#8221; custom_padding=&#8221;||||false|false&#8221; text_font_size_tablet=&#8221;21px&#8221; text_font_size_phone=&#8221;16px&#8221; text_font_size_last_edited=&#8221;on|phone&#8221; header_font_size_tablet=&#8221;43px&#8221; header_font_size_phone=&#8221;28px&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; header_4_font_size_tablet=&#8221;17px&#8221; header_4_font_size_phone=&#8221;15px&#8221; header_4_font_size_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;]<nav aria-label=\"breadcrumbs\" class=\"rank-math-breadcrumb\"><p><span class=\"last\">Home<\/span><\/p><\/nav><\/p>\n<h1><\/h1>\n<h1><\/h1>\n<h1><\/h1>\n<h1>Change &amp; loss<\/h1>\n<p><span style=\"font-weight: 400;\">Types of change and loss, grieving the changes, recovering from trauma<\/span>[\/et_pb_text][et_pb_image src=&#8221;https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/03\/Rareminds-Wellbeing-Hub-Website-Mockup-Images-Uncertainty-Change-and-Loss.jpg&#8221; title_text=&#8221;Rareminds-Wellbeing-Hub-Website-Mockup-Images-Uncertainty-Change-and-Loss&#8221; align_tablet=&#8221;left&#8221; align_phone=&#8221;left&#8221; align_last_edited=&#8221;on|phone&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; width=&#8221;350px&#8221; width_tablet=&#8221;200px&#8221; width_phone=&#8221;150px&#8221; width_last_edited=&#8221;on|desktop&#8221; module_alignment=&#8221;right&#8221; custom_margin=&#8221;||||false|false&#8221; custom_padding_tablet=&#8221;&#8221; custom_padding_phone=&#8221;|10px||10px|false|false&#8221; custom_padding_last_edited=&#8221;on|desktop&#8221; module_alignment_tablet=&#8221;right&#8221; module_alignment_phone=&#8221;left&#8221; module_alignment_last_edited=&#8221;on|tablet&#8221; border_radii=&#8221;on|50%|50%|50%|50%&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; specialty=&#8221;on&#8221; padding_right_1=&#8221;2vw&#8221; padding_left_2=&#8221;3vw&#8221; padding_top_bottom_link_1=&#8221;false&#8221; padding_top_bottom_link_2=&#8221;false&#8221; padding_left_right_link_1=&#8221;false&#8221; padding_left_right_link_2=&#8221;false&#8221; padding_1_tablet=&#8221;|0px|||false|false&#8221; padding_2_tablet=&#8221;|||0px|false|false&#8221; padding_1_phone=&#8221;|0px|||false|false&#8221; padding_2_phone=&#8221;|||0px|false|false&#8221; padding_1_last_edited=&#8221;on|desktop&#8221; padding_2_last_edited=&#8221;on|desktop&#8221; module_class=&#8221;reverse-columns-mobile&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; background_enable_color=&#8221;off&#8221; use_background_color_gradient=&#8221;on&#8221; background_color_gradient_direction=&#8221;90deg&#8221; background_color_gradient_stops=&#8221;#ffffff 75%|gcid-cda4ad62-552d-4861-ac19-bc0028373e46 75%&#8221; inner_width_tablet=&#8221;85%&#8221; inner_width_phone=&#8221;85%&#8221; inner_width_last_edited=&#8221;on|tablet&#8221; inner_max_width=&#8221;80%&#8221; 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_tablet=&#8221;|2vw|30px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>There can be a lot of different changes and losses to come to terms with when you are living with a rare condition. The type, and extent of these, will vary according to your condition, and how or when it impacts you personally.<\/p>\n<p>Being able to acknowledge and recognise change and loss as it happens is the first step in being able to manage its practical and emotional impact on you, and those around you.<\/p>\n<p>[\/et_pb_text][et_pb_video src=&#8221;https:\/\/www.rareminds.org\/wp-content\/uploads\/2025\/01\/Change-and-loss-english.mp4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; border_radii=&#8221;on|10px|10px|10px|10px&#8221; border_width_all=&#8221;1px&#8221; box_shadow_style=&#8221;preset1&#8243; global_colors_info=&#8221;{}&#8221;][\/et_pb_video][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>How change occurs<\/h2>\n<p>Some changes might happen quite quickly. Others will happen over a longer period of time.<\/p>\n<p><strong>Changes might include:<\/strong><\/p>\n<p><strong><\/strong><\/p>\n<ul>\n<li>changes to your personal relationships<\/li>\n<li>a new type of family life, or parenting experience<\/li>\n<li>changes to your finances<\/li>\n<li>adaptations to your home, or living arrangements<\/li>\n<li>changes to your work<\/li>\n<li>your body no longer behaves (or looks) as you want it to<\/li>\n<\/ul>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; custom_margin_tablet=&#8221;|2vw|30px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>How you might feel<\/h2>\n<p>Change and loss are always a lot to manage emotionally.<\/p>\n<p>Change is hard to come to terms with when it is \u2018imposed\u2019 on us, in the way a lot of the changes involved in adapting to a rare condition often are.<\/p>\n<p><strong>There is no one way to think, feel or respond. <\/strong><\/p>\n<p>You might feel:<\/p>\n<\/p>\n<ul>\n<li>angry, resentful or \u2018stressed out\u2019<\/li>\n<li>anxious or agitated<\/li>\n<li>sad or tearful<\/li>\n<li>low, exhausted or withdrawn<\/li>\n<li>absent-minded, or unable to concentrate<\/li>\n<li>more prone to headaches or stomach upsets<\/li>\n<li>more tired than usual, or find it hard to sleep<\/li>\n<\/ul>\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>Grieving the changes<\/h2>\n<p>Recognising when experiences involve loss can help in giving yourself permission to grieve the changes. Grieving is essentially allowing yourself to experience the thoughts and feelings that change and loss bring up.<\/p>\n<p>We talk more about grief <a href=\"https:\/\/www.rareminds.org\/wellbeing-hub\/uncertainty-change-loss\/grief\/\">here.<\/a><\/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>Loss &amp; change may be sudden &#8211; or gradual<\/h2>\n<p>With some rare conditions, things may change daily and life feels quite unpredictable. Trying to make plans or establish routines under these circumstances can be very challenging.<\/p>\n<p>For other conditions, there might be long periods when things feel quite \u2018stable\u2019. If something then changes unexpectedly you might feel quite unprepared.<\/p>\n<h5>Gradual change and loss<\/h5>\n<p>Some changes might be gradual. You might not always notice gradual changes in your own or a family members\u2019 health, appearance or abilities. If someone then draws your attention to it, it might feel upsetting. At other times, you may be all too aware of things changing.<\/p>\n<blockquote>\n<p>I hadn\u2019t realised how bad my speech had got as [my wife] was used to it. I hadn\u2019t been for an appointment for a few months, and then they pointed it out. It was a bit upsetting to be honest, but they\u2019ve made some suggestions of things that could help.<\/p>\n<\/blockquote>\n<h5>Sudden change<\/h5>\n<p>If you have been living with your rare condition for some time but without it impacting you too much, it can feel very unsettling if something suddenly changes. It can feel a bit like being diagnosed &#8216;all over again&#8217;, or even for the first time.<\/p>\n<p>Some rare conditions also include unpredictable or sudden life-threatening events. If this is an aspect of the condition you are impacted by, make sure you have a clear plan in place with the help of your healthcare professional about what to do if this happens. This will help you feel more prepared both practically and emotionally.<\/p>\n<blockquote>\n<p>T\u2019s neurological condition means any one of his regular seizures could be the end. When he was younger, it was terrifying but I think we\u2019ve sort of come to terms with it now. It sounds strange, but you sort of find a way to live it.<\/p>\n<\/blockquote>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;0px||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_tablet=&#8221;|2vw|30px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Trauma<\/h2>\n<p>Some experiences are not just stressful or difficult to cope with, but traumatic.\u00a0 Trauma is a consequence of having felt &#8216;overwhelmed&#8217; or at the edge of being able to cope with something.<\/p>\n<p><strong>Trauma can result from:<\/strong><\/p>\n<ul>\n<li>one-off events involving violence, distress or pain<\/li>\n<li>our own needs being neglected or ignored<\/li>\n<li>witnessing someone else in pain, be harmed or be hurt<\/li>\n<li>sudden, unwanted and unexpected change<\/li>\n<li>caring for a family member with high complex needs, especially if you have little or no support<\/li>\n<li>repeatedly supporting your child with unpleasant medical procedures<\/li>\n<li>violent or aggressive behaviour by a family member<\/li>\n<\/ul>\n<p><strong>Recognising trauma and post-traumatic stress is not necessarily straightforward, but can involve aspects such as:<\/strong><\/p>\n<p><strong><\/strong><\/p>\n<ul>\n<li>flashbacks, or being very preoccupied with a particular incident<\/li>\n<li>nightmares, bad dreams or finding it hard to sleep<\/li>\n<li>avoiding certain situations or environments<\/li>\n<li>being on constant \u2018high alert\u2019 or finding it hard to relax<\/li>\n<\/ul>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;6d2bc1d8-a2e9-472c-821a-6aa6bc293122&#8243; custom_margin_tablet=&#8221;|2vw|30px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Coping with a traumatic event<\/h2>\n<p><strong>Remind yourself that the event is now past, and not still happening in the present.<\/strong><\/p>\n<ul>\n<li>use grounding techniques from our <a href=\"#\">You and your feelings<\/a> pages<\/li>\n<li>your thoughts and feelings will take time to reduce in their intensity<\/li>\n<li>talk with someone you trust to help process what happened<\/li>\n<li>focus on spending time with people who help you feel calm, safe and understood<\/li>\n<\/ul>\n<p>Unless you are really struggling to cope, try to allow at least a month before seeking any professional help. This can help things &#8216;settle&#8217; in their own time, and for professional help to be more effective at that point if you need it.<\/p>\n<p>You can read more from the Royal College of Psychiatrists about coping after a traumatic event <a href=\"https:\/\/www.rcpsych.ac.uk\/mental-health\/mental-illnesses-and-mental-health-problems\/coping-after-a-traumatic-event\" target=\"_blank\" rel=\"noopener\">here<\/a>.<\/p>\n<h5>Complex trauma &#8211; when stress and trauma accumulate<\/h5>\n<p>Living with the impact of some rare conditions can increase the likelihood of &#8216;complex trauma&#8217;. This results from the repeated exposure over time to difficult situations which cannot be easily avoided.<\/p>\n<p><strong>Examples of complex trauma might include:<\/strong><\/p>\n<ul>\n<li>living with a family member whose behaviour is violent, unpredictable or hard to cope with<\/li>\n<li>lack of, or interrupted, sleep<\/li>\n<li>medical interventions or treatments which are unpleasant or painful<\/li>\n<li>chronic pain<\/li>\n<li>rejection or stigma resulting from appearance, difference or behaviour<\/li>\n<\/ul>\n<p>The signs of complex trauma can be very similar to event-related trauma. However, as complex trauma can result from living with situations or contact with institutions which are not easily avoided, finding strategies and support to help mitigate the impact is important.<\/p>\n<p>This might include:<\/p>\n<ul>\n<li>ongoing support from a professional counsellor<\/li>\n<li>being part of a support group so that you feel less alone with what you are dealing with<\/li>\n<\/ul>\n<h5>When to seek professional help:<\/h5>\n<p>There are no &#8216;hard and fast&#8217; rules about when to seek help. If you are finding it hard to cope, feel overwhelmed, or it is interfering with how you feel about the future, talk to a healthcare professional. You can decide together about the best type of support for you at that moment as an individual, and what is available.<\/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; icon_placement=&#8221;left&#8221; content_max_width=&#8221;100%&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; header_font=&#8221;||||||||&#8221; body_font_size=&#8221;16px&#8221; body_link_font=&#8221;|600|||on||||&#8221; body_link_text_color=&#8221;#000000&#8243; custom_margin=&#8221;||40px||false|false&#8221; custom_margin_tablet=&#8221;||30px||false|false&#8221; custom_margin_phone=&#8221;||30px||false|false&#8221; custom_margin_last_edited=&#8221;on|tablet&#8221; custom_padding=&#8221;20px|20px|20px|20px|true|true&#8221; link_option_url=&#8221;#&#8221; body_font_size_tablet=&#8221;14px&#8221; body_font_size_phone=&#8221;14px&#8221; body_font_size_last_edited=&#8221;on|desktop&#8221; border_radii=&#8221;on|30px|30px|30px|30px&#8221; border_width_all=&#8221;1px&#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>Mitigating the feeling of \u2018being on your own with something\u2019 is a key aspect to avoiding, and recovering, from trauma. Reaching out to others is important.\u00a0\u00a0<\/p>\n<p>[\/et_pb_blurb][et_pb_text module_class=&#8221;wh-text wh-quote&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; text_font_size=&#8221;16px&#8221; link_font=&#8221;|600|||on||||&#8221; link_text_color=&#8221;#000000&#8243; header_2_font=&#8221;||||||||&#8221; header_5_font=&#8221;|700|||||||&#8221; custom_margin=&#8221;||||false|false&#8221; custom_margin_tablet=&#8221;||||false|false&#8221; custom_margin_phone=&#8221;||||true|false&#8221; custom_margin_last_edited=&#8221;on|phone&#8221; custom_padding=&#8221;5%|5%|5%|5%|true|true&#8221; custom_padding_tablet=&#8221;8%||||false|true&#8221; custom_padding_phone=&#8221;20%|5%|9%|5%|false|true&#8221; custom_padding_last_edited=&#8221;on|desktop&#8221; text_font_size_tablet=&#8221;14px&#8221; text_font_size_phone=&#8221;14px&#8221; text_font_size_last_edited=&#8221;on|desktop&#8221; custom_css_before=&#8221;content: url(https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/04\/link-icon-txp.png);||position: absolute;||width: 90;||height: 90;||top: -10px;||right: -5px;||background: #D9EBDF;||border-radius: 0 0 0 30px;&#8221; border_radii=&#8221;on|30px|30px|30px|30px&#8221; border_width_all=&#8221;1px&#8221; border_color_all=&#8221;gcid-56bff3fb-e765-4a78-b152-15a836421100&#8243; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-56bff3fb-e765-4a78-b152-15a836421100%22:%91%22border_color_all%22,%22border_color_all%22%93}&#8221; custom_css_before_last_edited=&#8221;on|phone&#8221; custom_css_before_tablet=&#8221;content: url(https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/04\/link-icon-txp.png);||position: absolute;||width: 90;||height: 90;||top: -10px;||right: -5px;||background: #D9EBDF;||border-radius: 0 0 0 30px;&#8221; custom_css_before_phone=&#8221;content: url(https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/04\/link-icon-txp.png);||position: absolute;||width: 90;||height: 90;||top: -10px;||right: -5px;||border-radius: 0 0 0 30px;&#8221;]<\/p>\n<h2>Resources &amp; useful links<\/h2>\n<p>&nbsp;<\/p>\n<p><a href=\"https:\/\/www.affinityhub.uk\/1\/Welcome.html\" target=\"_blank\" rel=\"noopener\">Affinity Hub<\/a> talks more about the complex trauma of being the parent of a disabled child with high care needs.<\/p>\n<p><a href=\"https:\/\/www.mind.org.uk\/information-support\/types-of-mental-health-problems\/trauma\/coping-with-trauma\/\" target=\"_blank\" rel=\"noopener\">MIND<\/a> have more information on understanding trauma, and how practical strategies to help both cope and recover.<\/p>\n<p><a href=\"https:\/\/www.bacp.co.uk\/about-therapy\/trauma-and-ptsd\/\" target=\"_blank\" rel=\"noopener\">The British Association of Counselling &amp; Psychotherapy<\/a> has more information about how counselling and therapy can help manage trauma and post-traumatic stress disorder.<\/p>\n<p>If you are still struggling several weeks or months after a difficult incident, there are particular specialist treatments such as <a href=\"https:\/\/emdrassociation.org.uk\/a-unique-and-powerful-therapy\/\" target=\"_blank\" rel=\"noopener\">EMDR therapy<\/a>.<\/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; custom_margin_tablet=&#8221;|2vw|30px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>You &amp; your identity<\/h2>\n<p>Coming to terms with what having a rare condition means for you does not happen overnight. Whether it is you who are affected, or someone you are close to, it may have a different meaning to you at different points in your life.<\/p>\n<p><strong>Diagnosed later in life:<\/strong> This can mean coming to terms with a \u2018new piece of information\u2019 about yourself (particularly if your condition is genetic).<\/p>\n<p><strong>Diagnosed as a child or young person:<\/strong> You might have a range of different feelings about it as you get older, or it begins to impact you differently.<\/p>\n<p>Getting used to being identified as disabled, a \u2018parent of a disabled child\u2019 or as \u2018a carer\u2019 can be a big psychological change.<\/p>\n<blockquote>\n<p>I didn\u2019t know anything about disabilities, hospitals or parenting \u2013 never mind a child with different needs! \u2013 until Cara was born. The world turned upside down and it&#8217;s fair to say there were a lot of tears. It\u2019s not all been bad, but there have been some very tough times and I am quite a different person now\u2026 not better or worse \u2026 but definitely different.<\/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; custom_margin_tablet=&#8221;|2vw|30px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Coping with changes to personality, thinking or emotions<\/h2>\n<p>Some rare conditions involve changes over time to thinking, the expression of feelings, or personality. If these symptoms are part of the condition you are impacted by, this might feel quite challenging.\u00a0\u00a0<\/p>\n<p>Your healthcare professionals are there to help you monitor and manage any changes such as these if they occur.\u00a0<\/p>\n<p>Rare condition-specific groups can be very supportive for both affected people and carers. The most important thing is to reach out to others that you feel comfortable with, and not feel you have to cope alone.<\/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; custom_margin_tablet=&#8221;|2vw|30px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Mobility or disability aids<\/h2>\n<p>Some conditions involve coming to terms with changes to your, or your child\u2019s body, or what it can do.\u00a0<\/p>\n<p>If you are offered the use of mobility or disability aids, it&#8217;s ok to have a range of feelings about these. Adaptations are designed to help keep and promote independence, not take it away. Many people find that their energy levels and mood improve as a result because certain actions are no longer as tiring.\u00a0 \u00a0 \u00a0<\/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; custom_margin_tablet=&#8221;|2vw|30px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Coping with change &amp; loss<\/h2>\n<p>There can be lots of different feelings involved when you are facing change and loss.<\/p>\n<p>Sometimes you might feel more &#8216;accepting&#8217; of what is happening, whilst other days feel much harder.<\/p>\n<p>Try not to feel you have to keep difficult feelings at a distance, or that you &#8216;shouldn&#8217;t have&#8217; particular thoughts or feelings. This can take a lot of energy.<\/p>\n<p><strong>Finding ways to express your feelings, or talk about what is going on for you, can make changes easier to bear. <\/strong><\/p>\n<p>You could try:<\/p>\n<ul>\n<li>talking to a supportive friend or family member that you trust<\/li>\n<li>writing down, or drawing, how you feel<\/li>\n<li>having a good cry, or shout (somewhere private if that&#8217;s helpful)<\/li>\n<li>learning a skill like Mindfulness or relaxation<\/li>\n<li>joining a peer support group<\/li>\n<li>talking to a psychologist or counsellor<\/li>\n<\/ul>\n<h5>Surfing difficult feelings and experiences<\/h5>\n<p>Think about a surfer at sea.<\/p>\n<p>They keep upright on their board by adjusting their body and movements according to the waves.<\/p>\n<p>This is what it can be like living with a rare condition. Some days will be more turbulent than others.<\/p>\n<p>Finding ways to keep afloat is important. It can be tiring, but you become more &#8216;skillful&#8217; with practice.<\/p>\n<p>This is a useful image for living with a rare condition. Have confidence in your ability to adapt and cope.<\/p>\n<h5>Keep room for hope<\/h5>\n<p>As humans we have a tendency to fill a future which is uncertain with our worst fears. This is one of the ways to try to feel more prepared.<\/p>\n<p>However, we often cope much better (even with very difficult future events) than we initially feared.<\/p>\n<p>Uncertainty &#8211; and not knowing &#8211; also means allowing room for hope. This includes the hope that the future may not be quite as difficult as we first believed, or that we cope better than we think.<\/p>\n<blockquote>\n<p>I was really angry for quite a while about [the condition] and what it was doing to my life. Now, I find it hard to think about who I would be without it..not that I want it particularly!.. but it&#8217;s all part of who I am now . Even my scars I don\u2019t mind particularly, and I never thought I\u2019d say that.<\/p>\n<\/blockquote>\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; 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}&#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 of the surfer: If you have been \u2018knocked off your surf-board\u2019 or feel like you&#8217;re drowning, reach out to a rare condition organisation, or professional counsellor. Living with a rare condition is uniquely psychologically demanding. Having support helps both you, and those you care about.<\/p>\n<p>[\/et_pb_blurb][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#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 module_class=&#8221;wh-text wh-quote&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; text_font_size=&#8221;16px&#8221; link_font=&#8221;|600|||on||||&#8221; link_text_color=&#8221;#000000&#8243; header_2_font=&#8221;||||||||&#8221; header_5_font=&#8221;|700|||||||&#8221; custom_margin=&#8221;||||false|false&#8221; custom_margin_tablet=&#8221;||||false|false&#8221; custom_margin_phone=&#8221;||||true|false&#8221; custom_margin_last_edited=&#8221;on|phone&#8221; custom_padding=&#8221;5%|5%|5%|5%|true|true&#8221; custom_padding_tablet=&#8221;8%||||false|true&#8221; custom_padding_phone=&#8221;20%|5%|9%|5%|false|true&#8221; custom_padding_last_edited=&#8221;on|desktop&#8221; text_font_size_tablet=&#8221;14px&#8221; text_font_size_phone=&#8221;14px&#8221; text_font_size_last_edited=&#8221;on|desktop&#8221; header_2_font_size_tablet=&#8221;&#8221; header_2_font_size_phone=&#8221;20px&#8221; header_2_font_size_last_edited=&#8221;on|phone&#8221; custom_css_before=&#8221;content: url(https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/04\/link-icon-txp.png);||position: absolute;||width: 90;||height: 90;||top: -10px;||right: -5px;||background: #D9EBDF;||border-radius: 0 0 0 30px;&#8221; border_radii=&#8221;on|30px|30px|30px|30px&#8221; border_width_all=&#8221;1px&#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%93}&#8221; custom_css_before_last_edited=&#8221;on|phone&#8221; custom_css_before_tablet=&#8221;content: url(https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/04\/link-icon-txp.png);||position: absolute;||width: 90;||height: 90;||top: -10px;||right: -5px;||background: #D9EBDF;||border-radius: 0 0 0 30px;&#8221; custom_css_before_phone=&#8221;content: url(https:\/\/www.rareminds.org\/wp-content\/uploads\/2024\/04\/link-icon-txp.png);||position: absolute;||width: 90;||height: 90;||top: -10px;||right: -5px;||border-radius: 0 0 0 30px;&#8221;]<\/p>\n<h2>Resources &amp; useful links<\/h2>\n<p>Psychology Today &#8211; <a href=\"https:\/\/www.psychologytoday.com\/us\/blog\/in-flux\/202007\/5-tips-help-you-deal-when-life-suddenly-changes\" target=\"_blank\" rel=\"noopener\">5 tips to help you deal when life suddenly changes<\/a><\/p>\n<p>Mental Health Foundation &#8211; <a href=\"https:\/\/www.mentalhealth.org.uk\/explore-mental-health\/articles\/change-loss-bereavement#:~:text=Sometimes%20you%20%20may%20find%20 it,an%20 outlet%20is%20 helpful%20too.\" target=\"_blank\" rel=\"noopener\">Change, loss and bereavement<\/a><\/p>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][et_pb_column type=&#8221;1_4&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][pac_divi_table_of_contents title=&#8221;Contents&#8221; collapse_when_sticky=&#8221;on&#8221; marker_position=&#8221;outside&#8221; level_markers_2=&#8221;icons&#8221; icon_marker_2=&#8221;&#x5e;||divi||400&#8243; indent_amount_2=&#8221;0px&#8221; allow_collapse_minimize_tablet=&#8221;off&#8221; allow_collapse_minimize_phone=&#8221;on&#8221; allow_collapse_minimize_last_edited=&#8221;on|desktop&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; sticky_position_phone=&#8221;none&#8221; sticky_position_last_edited=&#8221;off|phone&#8221; global_colors_info=&#8221;{%22gcid-cda4ad62-552d-4861-ac19-bc0028373e46%22:%91%22title_container_bg_color%22%93,%22gcid-cf9415ef-e483-4e35-a620-b796a7d52716%22:%91%22body_area_text_link_color__hover%22%93}&#8221;][\/pac_divi_table_of_contents][et_pb_text disabled_on=&#8221;on|on|off&#8221; module_class=&#8221;wh-text wh-quote&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; header_2_font=&#8221;|700|||||||&#8221; header_2_line_height=&#8221;2em&#8221; header_3_font_size=&#8221;23px&#8221; header_5_font=&#8221;|700|||||||&#8221; header_5_text_color=&#8221;#82c398&#8243; header_5_font_size=&#8221;20px&#8221; header_5_line_height=&#8221;2em&#8221; width=&#8221;250px&#8221; custom_margin=&#8221;||26px||false|false&#8221; custom_padding=&#8221;|||15px|false|false&#8221; sticky_limit_bottom=&#8221;body&#8221; header_2_font_size_tablet=&#8221;&#8221; header_2_font_size_phone=&#8221;22px&#8221; header_2_font_size_last_edited=&#8221;on|phone&#8221; header_2_line_height_tablet=&#8221;2em&#8221; header_2_line_height_phone=&#8221;1.4em&#8221; header_2_line_height_last_edited=&#8221;on|phone&#8221; header_5_font_size_tablet=&#8221;20px&#8221; header_5_font_size_phone=&#8221;16px&#8221; header_5_font_size_last_edited=&#8221;on|phone&#8221; header_5_line_height_tablet=&#8221;2em&#8221; 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;Uncertainty&#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@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI0NzgifX0=@&#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%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>The challenge of uncertainty, managing anticipatory grief and anxiety<\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;Change &#038; loss&#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@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI2MTkifX0=@&#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%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>Types of change and loss, grieving the changes, recovering from trauma<\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;Grief&#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; 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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@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI2NDkifX0=@&#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%93}&#8221; background_color__hover=&#8221;#b4dbc1&#8243; 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custom_padding=&#8221;5px|10px|||false|false&#8221; animation=&#8221;off&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjIyNDUifX0=@&#8221; header_font_size_tablet=&#8221;1.1em&#8221; header_font_size_phone=&#8221;1.1em&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; custom_css_main_element=&#8221;width: 250px&#8221; custom_css_blurb_title=&#8221;padding-top: 6px||&#8221; border_radii=&#8221;on|15px|15px|15px|15px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22%93}&#8221; background__hover_enabled=&#8221;on|hover&#8221; background_color__hover=&#8221;#cde7d6&#8243; background_enable_color__hover=&#8221;on&#8221; custom_padding__hover_enabled=&#8221;on|hover&#8221; custom_padding__hover=&#8221;|||10px|false|false&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Uncertanty change and loss&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; icon_color=&#8221;#000000&#8243; icon_placement=&#8221;left&#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;||||||||&#8221; header_font_size=&#8221;1rem&#8221; header_letter_spacing=&#8221;1px&#8221; header_line_height=&#8221;1.3em&#8221; body_font_size=&#8221;16px&#8221; custom_padding=&#8221;5px|10px|||false|false&#8221; animation=&#8221;off&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI0NzUifX0=@&#8221; header_font_size_tablet=&#8221;1.1em&#8221; header_font_size_phone=&#8221;1.1em&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; custom_css_main_element=&#8221;width: 250px&#8221; custom_css_blurb_title=&#8221;padding-top: 5px||||&#8221; border_radii=&#8221;on|15px|15px|15px|15px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#cde7d6&#8243; custom_padding__hover=&#8221;|||10px|false|false&#8221; custom_padding__hover_enabled=&#8221;on|hover&#8221; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Relationships&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; icon_color=&#8221;#000000&#8243; icon_placement=&#8221;left&#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;||||||||&#8221; header_font_size=&#8221;1rem&#8221; header_letter_spacing=&#8221;1px&#8221; header_line_height=&#8221;1.3em&#8221; body_font_size=&#8221;16px&#8221; custom_padding=&#8221;5px|10px|||false|false&#8221; animation=&#8221;off&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI2NjkifX0=@&#8221; header_font_size_tablet=&#8221;1.1em&#8221; header_font_size_phone=&#8221;1.1em&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; custom_css_main_element=&#8221;width: 250px&#8221; custom_css_blurb_title=&#8221;padding-top: 5px||&#8221; border_radii=&#8221;on|15px|15px|15px|15px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#cde7d6&#8243; custom_padding__hover=&#8221;|||10px|false|false&#8221; custom_padding__hover_enabled=&#8221;on|hover&#8221; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;You and your feelings&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; _builder_version=&#8221;4.24.3&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;ec31b593-7ea3-4476-a3e9-378d966a363d&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI3MjYifX0=@&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22,%22background_color__hover%22,%22background_color__hover%22,%22background_color__hover%22%93}&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Coping with pain&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; _builder_version=&#8221;4.27.5&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;ec31b593-7ea3-4476-a3e9-378d966a363d&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjUwOTQifX0=@&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22%93}&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Fatigue, tiredness &#038; exhaustion&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; _builder_version=&#8221;4.27.5&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;ec31b593-7ea3-4476-a3e9-378d966a363d&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjUxOTkifX0=@&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22%93}&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Navigating healthcare&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; icon_color=&#8221;#000000&#8243; icon_placement=&#8221;left&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; header_font=&#8221;||||||||&#8221; header_font_size=&#8221;1em&#8221; header_letter_spacing=&#8221;1px&#8221; header_line_height=&#8221;1.3em&#8221; body_font_size=&#8221;16px&#8221; custom_padding=&#8221;5px|10px|||false|false&#8221; animation=&#8221;off&#8221; link_option_url=&#8221;\/wellbeing-hub\/navigating-healthcare&#8221; header_font_size_tablet=&#8221;1.1em&#8221; header_font_size_phone=&#8221;1.1em&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; custom_css_main_element=&#8221;width: 250px&#8221; custom_css_blurb_title=&#8221;padding-top: 5px||&#8221; border_radii=&#8221;on|15px|15px|15px|15px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#cde7d6&#8243; custom_padding__hover=&#8221;|||10px|false|false&#8221; custom_padding__hover_enabled=&#8221;on|hover&#8221; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Sources of support&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; icon_color=&#8221;#000000&#8243; icon_placement=&#8221;left&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; header_font=&#8221;||||||||&#8221; header_font_size=&#8221;1rem&#8221; header_letter_spacing=&#8221;1px&#8221; header_line_height=&#8221;1.3em&#8221; body_font_size=&#8221;16px&#8221; custom_padding=&#8221;5px|10px|||false|false&#8221; animation=&#8221;off&#8221; link_option_url=&#8221;\/wellbeing-hub\/sources-of-support&#8221; header_font_size_tablet=&#8221;1.1em&#8221; header_font_size_phone=&#8221;1.1em&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; custom_css_main_element=&#8221;width: 250px&#8221; custom_css_blurb_title=&#8221;padding-top: 5px||&#8221; border_radii=&#8221;on|15px|15px|15px|15px&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22,%22background_color__hover%22%93}&#8221; background_color__hover=&#8221;#cde7d6&#8243; custom_padding__hover=&#8221;|||10px|false|false&#8221; custom_padding__hover_enabled=&#8221;on|hover&#8221; background_enable_color__hover=&#8221;on&#8221; background__hover_enabled=&#8221;on|hover&#8221;][\/et_pb_blurb][et_pb_blurb title=&#8221;Deciding to have children (or not)&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#x39;||divi||400&#8243; _builder_version=&#8221;4.27.6&#8243; _dynamic_attributes=&#8221;link_option_url&#8221; _module_preset=&#8221;ec31b593-7ea3-4476-a3e9-378d966a363d&#8221; link_option_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjU4NDUifX0=@&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{%22gcid-921d75e2-c63d-46b3-a7b4-c6fdbe950b00%22:%91%22background_color__hover%22%93}&#8221;][\/et_pb_blurb][\/et_pb_column][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p><nav aria-label=\"breadcrumbs\" class=\"rank-math-breadcrumb\"><p><span class=\"last\">Home<\/span><\/p><\/nav> Change &amp; loss Types of change and loss, grieving the changes, recovering from traumaThere can be a lot of different changes and losses to come to terms with when you are living with a rare condition. The type, and extent of these, will vary according to your condition, and how or when it impacts [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":2475,"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":"","_members_access_role":[],"_members_access_error":""},"folder":[35],"class_list":["post-2619","page","type-page","status-publish","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.rareminds.org\/nl\/wp-json\/wp\/v2\/pages\/2619","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=2619"}],"version-history":[{"count":19,"href":"https:\/\/www.rareminds.org\/nl\/wp-json\/wp\/v2\/pages\/2619\/revisions"}],"predecessor-version":[{"id":6084,"href":"https:\/\/www.rareminds.org\/nl\/wp-json\/wp\/v2\/pages\/2619\/revisions\/6084"}],"up":[{"embeddable":true,"href":"https:\/\/www.rareminds.org\/nl\/wp-json\/wp\/v2\/pages\/2475"}],"wp:attachment":[{"href":"https:\/\/www.rareminds.org\/nl\/wp-json\/wp\/v2\/media?parent=2619"}],"wp:term":[{"taxonomy":"folder","embeddable":true,"href":"https:\/\/www.rareminds.org\/nl\/wp-json\/wp\/v2\/folder?post=2619"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}