{"id":183,"date":"2021-03-14T19:07:30","date_gmt":"2021-03-14T19:07:30","guid":{"rendered":"https:\/\/chronicallyfabuloustherapist.com\/?p=183"},"modified":"2021-07-07T19:36:38","modified_gmt":"2021-07-07T19:36:38","slug":"dos-and-donts-if-you-love-someone-with-chronic-illness","status":"publish","type":"post","link":"https:\/\/chronicallyfabuloustherapist.com\/?p=183","title":{"rendered":"Dos and Don\u2019ts if you Love Someone with Chronic Illness"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">Suffering with any chronic illness, especially multiple ones is physically, mentally, and emotionally exhausting. There are the physical symptoms that cause exhaustion, but there\u2019s also so much emotional and mental energy that\u2019s required as well to manage chronic illness. Between all the physician and pharmacy visits and phone calls, advocacy, treatments, medications, and self-care, managing my illnesses is another full-time job. Except this one doesn\u2019t have weekends, retirement or other time-off. It never ends.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">And because of all the stress, work, and exhaustion, having healthy support from significant others is crucial and life-giving. But on the other hand, having unhealthy \u201csupport\u201d &#8211; even though it is likely well-intentioned is even more draining, hurtful, and exhausting. Having been a chronic illness sufferer for several years now as well as an advocate for others, I would like to give some feedback to those who care about a friend, family member, colleague, coworker, or significant other with chronic illness. There are definitely toxic people out there that are best to just avoid as much as possible, but I believe that most other people genuinely want to be helpful and not harmful.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">So, here comes my non-exhaustive list&#8230;<\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>DON\u2019T GIVE UNSOLICITED ADVICE. This one deserves all caps. The #1 reason I hear for why people with chronic illness don\u2019t share their struggles with others is the overwhelming amount of unsolicited advice that follows. I can confirm that this is a rampant issue for all of us with chronic illness. I have many personal examples&#8230; The funeral where an acquaintance I hadn\u2019t seen for years had to come up to me and tell me about the cherry juice she saw a televangelist was selling on TV that would allow me to no longer need my arm crutch. The training I attended for my work where a total stranger gave me her business card and started telling me about how the diet plan she sold would be my cure-all. And so many more&#8230; Except for the people seeing me as a source of income for their at-home business, I genuinely believe that most people offering advice have good intentions. They just want their loved one\u2019s suffering to end. The problem is that just about everyone who gives advice is convinced that their advice is the one thing that not only has the sufferer not heard of before but that it is going to be the answer for ending the suffering. Essential oils, yoga poses, supplements, diet plans, juices, food items&#8230; Unless you\u2019re an expert in our specific illness (very rare), chances are that if you\u2019ve heard about it, we have too. And we\u2019ve either tried it already or know that it\u2019s not helpful.<\/li><\/ul>\n\n\n\n<ul class=\"wp-block-list\"><li>DO communicate that the sufferer is doing the best they can to care for themselves. Words cannot adequately express how meaningful it was to me when my husband, after a medical appointment where I was told I did something wrong simply for advocating for myself, put his hands on my shoulders, looked me in the eyes and said \u201cYou did not do anything wrong. You are really good at advocating for yourself. People are threatened by strong educated women.\u201d My eyes immediately filled with tears, and I collapsed on his shoulder. It felt like a huge weight had suddenly been lifted from me.<\/li><\/ul>\n\n\n\n<ul class=\"wp-block-list\"><li>DON\u2019T offer toxic positivity. According to an article posted by Healthline, Dr. Jaime Zuckerman, a clinical psychologist specializing in anxiety disorders and self-esteem, defines toxic positivity as &#8220;the assumption, either by one\u2019s self or others, that despite a person\u2019s emotional pain or difficult situation, they should only have a positive mindset or \u2013 my pet peeve term \u2013 \u2018positive vibes\u2019.\u201d <a href=\"https:\/\/www.healthline.com\/health\/mental-health\/toxic-positivity-during-the-pandemic\">https:\/\/www.healthline.com\/health\/mental-health\/toxic-positivity-during-the-pandemic<\/a> General examples of toxic positivity include chastising someone for being too negative, telling someone to just forgive and forget, \u201cJust look at the bright side.\u201d, \u201cIt could be worse.\u201d usually followed by a story of someone else with \u201cworse\u201d issues, \u201cEverything happens for a reason.\u201d or in religious circles telling someone that God has a purpose for their pain, \u201cIt will all be ok.\u201d, pointing out that the person doesn\u2019t look that sick, and the list goes on&#8230; While usually (but definitely not always) well-intentioned, these responses only lead to a sufferer feeling more alone, unsupported, and ashamed.<\/li><\/ul>\n\n\n\n<ul class=\"wp-block-list\"><li>DO offer lots and lots of empathy. Empathy is walking with a person through their pain and to the best of your ability imagining what it would be like in their shoes. Acknowledge your loved one\u2019s pain and suffering. Let your loved one know that it\u2019s ok to not be ok. That it\u2019s ok to be tired, sad, and\/or hurting. It means so much to me when my husband turns to me and says \u201cI see how much in pain you are, and I wish I could take it all away. And I know that I can\u2019t. I\u2019m so very proud of you.\u201d I feel seen, heard, and validated. And it\u2019s so very healing.<\/li><\/ul>\n\n\n\n<ul class=\"wp-block-list\"><li>DON\u2019T hold onto unreasonable expectations. Chronic illnesses are so very unpredictable \u2013 even within the same illness. Some patients go into life-long remission with medications. And others continue to struggle and decline over time. Chronic means life-long. Just because my family and I take a vacation, doesn\u2019t mean my illnesses also take a vacation. I will not experience miraculous healing while on vacation at Disney World. In fact, even a magical place like that while a lot of fun and definitely an experience to look forward to, might actually make my symptoms worse.<\/li><\/ul>\n\n\n\n<ul class=\"wp-block-list\"><li>DO partner with the sufferer in advocating for and providing for their needs. Do your own independent research on your loved one\u2019s illness(es). One of my biggest stressors is trying to make sure that my family and I are having fun on vacation while also ensuring that places are accessible for me. I felt so loved when my in-laws got a special license to drive their SUV on the beach. It\u2019s a bit stressful trying to figure out how to physically navigate sand with kids and physical disabilities. Their being proactive meant so much to me. It also meant the world to me when my best friend told me she was doing her own research on ableism so that she could help to make things easier for me. And when I see my husband reading a book about one of my diseases and putting hours and hours of time and effort into making our home more accessible for me. Most of us with chronic illness worry that we\u2019re a burden to our family and friends. So anytime you can make it easier for one of us means so much. It makes our mental, emotional, and physical load much easier to bear.<\/li><\/ul>\n\n\n\n<ul class=\"wp-block-list\"><li>DON\u2019T connect chronic illness with faith and healing. On multiple occasions I have sat through church services and heard the message that healing was there for me if I just had more faith. In other words, it was communicated that I am responsible for my suffering. This is spiritual abuse for a chronic illness sufferer. I do not deserve my suffering, and no matter how much faith I have or how much I pray, I will likely never experience healing. Sometimes shitty things just happen.<\/li><\/ul>\n\n\n\n<ul class=\"wp-block-list\"><li>DO offer more than just prayers. I always appreciate knowing that people who love me are praying for me. But&#8230; prayers will not make meals magically appear or my house to magically clean itself or my wheelchair or rollator to magically start climbing stairs. You get the picture. People with chronic illness also need tangible help and support. We don\u2019t always have the energy to make meals or clean our houses. Much of the world is still inaccessible to those of us with physical disabilities, and physical assistance is needed. Even financial supports, like disability income is inaccessible or unrealistic for many of us. We need advocates at all levels and in all places \u2013 are own personal worlds, the medical world, the financial and legal world, and in government.<\/li><\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Thanks so much for reading and sticking with me so far! This is by no means an exhaustive list. These are just the areas of support that I have personally found to be most beneficial or harmful. And if you\u2019re a caregiver or just reading this and feeling exhausted, I see you. Caring for a loved one with chronic illness is emotionally, mentally and physically exhausting. And just as harmful and isolating as the DON\u2019Ts list for us sufferers can be, the DO list can be equally healing and restorative. Thank you for all you do as a caregiver for someone like me. Sufferers don\u2019t expect perfection from loved ones. No one is capable of that. We just need your best efforts and the ability to openly and honestly communicate with you. And please get your own supports. Support groups, therapists, friendships, etc. can be so very healing and helpful for caregivers and supporters too.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Chronic illness sufferers: Please comment with DOs and DON\u2019Ts that you would add to this list as well as ways that others behaviors or words have helped or hurt you. I wish you all lots of love and support on this intensely challenging journey. Much virtual love to all of you!<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Suffering with any chronic illness, especially multiple ones is physically, mentally, and emotionally exhausting. There are the physical symptoms that cause exhaustion, but there\u2019s also so much emotional and mental energy that\u2019s required as well to manage chronic illness. Between all the physician and pharmacy visits and phone calls, advocacy, treatments, medications, and self-care, managing &hellip; <a href=\"https:\/\/chronicallyfabuloustherapist.com\/?p=183\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;Dos and Don\u2019ts if you Love Someone with Chronic Illness&#8221;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"nf_dc_page":"","om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1],"tags":[58,56,55,10,59,62,60,57,61],"class_list":["post-183","post","type-post","status-publish","format-standard","hentry","category-uncategorized","tag-advocacy","tag-caregivers","tag-caregiving","tag-chronic-illness","tag-emotional-support","tag-empathy","tag-spiritual-abuse","tag-toxic-positivity","tag-unsolicited-advice"],"jetpack_sharing_enabled":true,"jetpack_featured_media_url":"","_links":{"self":[{"href":"https:\/\/chronicallyfabuloustherapist.com\/index.php?rest_route=\/wp\/v2\/posts\/183","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/chronicallyfabuloustherapist.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/chronicallyfabuloustherapist.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/chronicallyfabuloustherapist.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/chronicallyfabuloustherapist.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=183"}],"version-history":[{"count":5,"href":"https:\/\/chronicallyfabuloustherapist.com\/index.php?rest_route=\/wp\/v2\/posts\/183\/revisions"}],"predecessor-version":[{"id":199,"href":"https:\/\/chronicallyfabuloustherapist.com\/index.php?rest_route=\/wp\/v2\/posts\/183\/revisions\/199"}],"wp:attachment":[{"href":"https:\/\/chronicallyfabuloustherapist.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=183"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/chronicallyfabuloustherapist.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=183"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/chronicallyfabuloustherapist.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=183"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}