Medical gaslighting What happens when your coping mechanism is removed Religion and Ableism being the good friend, daughter, daughter in law, wife. The exodus of family and friends How medical gaslighting keeps you from medical care and endangers lives (tiktok nurse) Job impact of chronic illness ADA needs Setting boundaries with family and friends when discussing illness The grieving process for chronic illness The importance of online advocacy ie keyboard warriors The cost of health and life goals Website/Blog, Twitter, & Instagram Handle Instagram: @autoimmuneabbey Name * Autoimmune Abbey Disorder Info What is your disorder? * Chronic migraine, POTS, undifferentiated spondylitis, generalized anxiety, OCD, gluten intolerance, IBS At what age did your disorder become a daily issue? * 22 Who were you before your illness became debilitating? * I was a long-distance runner who loved marathons and ultramarathons and felt completely invincible. Although I was always a bit of a sick kid and teen - I had episodic migraine, a dairy allergy that I eventually started to outgrow at around 12, and a long history of painful periods - I took my health for granted. I was only sick a handful of days each month, and I was ambitious, mentally healthy, and had lots of close friends. What would you do if you were not dealing with your disorder and/or disability? * I would certainly still be a long-distance runner, and I would also be doing triathlons. I would probably not have lost so many friends and would have a better relationship with my parents and in-laws. I experienced the typical quiet mass exodus of friends and family that many other disabled people also experience upon becoming ill. Thankfully my spouse and a few best friends stuck around. What would you like people to know about your daily life? * Chronic illness is isolating, exhausting, and often traumatic. It's really hard to stay mentally healthy when you're fighting daily symptoms but you constantly feel like you have to prove your symptoms to everyone around you. Being gaslighted on such a grand scale, especially by doctors, has a serious impact on a person's health. What would make living and moving in the world easier for you? * The biggest thing that would make the world more accessible to me would be less fluorescent lights. Chronic migraine and POTS make me sensitive to sensory overload, and fluorescent lights are impossible to deal with as a migrainuer. I have turned down jobs simply because of the lighting in the workspace. People think my intolerance for bright lights is just a preference, but it's definitely a non-negotiable accessibility need. Do you have any life hacks? * Write EVERYTHING down in your phone calendar to help compensate for brain fog. It's a game-changer. What kind of support do you get from family or friends? * My spouse and a few of my close friends have been amazing at supporting me through my illness. They are curious about my symptoms and experience with chronic illness, open to learning about ableism and medical gaslighting, and willing to make sure I don't go hungry at social events because of the gluten intolerance. Unfortunately, my family and my spouse's family have not been so supportive. For a while, I tried to be assertive with them about my needs and limitations, but at this point, I'm setting clear boundaries with them - I will not talk to them about my health anymore, beyond just sharing my diagnoses. And of course, like most chronically ill folks, I've lost a few friends since becoming ill. Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? * YES. This is what I refer to as medical gaslighting. In my experience, the majority of doctors will begin to doubt my symptoms the moment they realize they don't know how to explain my symptoms or treat them. For example, when I asked my OBGYN about Endo, she did an ultrasound and found nothing. Now she blames my pelvic pain on the fact that "redheads have a lower tolerance for pain." My first neurologist told me my chronic migraine was all in my head. And several specialists have blamed all my symptoms on my anxiety disorder. How has your chronic illness affected your relationships? * It has strengthened my relationship with my spouse and a few close friends but has alienated me from most of my family and some friends. Is there anything you are afraid to tell people in your life? * I'm afraid to tell them that I'm still grieving the loss of my health and I badly need their support. What is your best coping mechanism? * My Instagram advocacy work has provided me with so much comfort, community, and a sense of purpose again. I can't imagine dealing with chronic illness without the Instagram community. What are you the most concerned about and the most hopeful for in the future? * I'm most concerned about and hopeful for my future career in therapy. I feel called to the field and I want to specifically work with disabled people and other marginalized groups, like the LGBTQ community and racial minorities. But I'm scared that the stress and exhaustion of grad school may harm my health and that I might fail to complete my degree. Is there anything you *don't* want to talk about? Is there a subject we should avoid during the Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with. Medical gaslighting. It also may be interesting to talk about ableism in religion. I'm an ex-Christian who ultimately left the faith because I found it incompatible with my progressive values and because I got burned by religion and religious people when I became chronically ill. What makes you energized or enthusiastic? What drains you? Watching Netflix with my husband, training my puppy, doing disability advocacy work, and going for walks when I'm able to all energize me. Big social events and traveling with chronic illness all drain me. Any favorite books or shows? On Netflix: Sex Ed, Working Moms, Stranger Things, Glow; On Hulu: The Great; Books: Carry On by Rainbow Rowell, of course Harry Potter What is the hardest and/or best lesson your condition has taught you? That you never know how strong you are or how much pain you can tolerate with a smile until you become chronically ill. What is the best purchase under $100 that helped your life The Headache Hat on Amazon is a lifesaver for migraines. I own three now, and I rotate through them on a regular basis. It's a wearable icepack. EPISODE TRANSCRIPT (please forgive the errors!) Monica: [00:00:26] Well, "Autoimmune Abbey", thank you so much for coming on. And you've filled out this incredible form and I kind of thought I knew, like we're just going to talk about medical gaslighting, and we're definitely gonna talk about that, but you brought up so many really important things in your. Your form, like from like religion and abelism, Abbey: [00:00:46] which hit Monica: [00:00:48] the cross hairs. And, yeah. So where do you want to start? Do you want to start with medical gaslighting or do you want to start with, yeah, I have a list, so anytime I can Abbey: [00:00:58] evolve it to things to talk to you about. Yeah. Let's start with that. Cause I think that's definitely really important, but the. The ableism and religion is something I've been looking forward to talking about. And, haven't really talked about on Instagram very much yet, cause I'm not very open about that with a lot of friends and family yet, but it's the thing that's important and harmful. So yeah, we should definitely talk about that too. Monica: [00:01:24] And if at any time you feel uncomfortable with that line of questioning, just raise your hand and I will switch questioning, like no problem. but you also had brought up, boundaries and I totally want to talk to you about boundaries. So I guess we'll start with medical gaslighting. Kind of move through. do you want to give just like a quick account of what you have so people know who aren't familiar with you and if you're not familiar with auto immune Abby, I have been stalking auto-immune Abby on Instagram for a very long time. And then, please go to Instagram and follow autoimmune. Abby. I will refer to you as Abby from now on, but I want to make sure everyone had to get your handle. Abbey: [00:02:00] Yeah. So, I have chronic migraine, which was, the first illness that I developed, like back when I was 22, I've had episodic, migraine, my whole life, but the chronic part started very suddenly, and inexplicably. And so that was really disabling for a long time and really my first experience with the gaslighting. and then. Symptoms just kind of started to quickly snowball after that. So then I started having like a lot of the pots symptoms, which I know you also have, so you can relate to how, like, I don't know how odd all of those symptoms seem individually and how like doctors are just like, I don't know what this is, is probably anxiety. Like. Go see someone else. So, yeah, the pots is really the second thing. And then, undifferentiated spondylitis, which is, an autoimmune disease where your immune system attacks your ligaments, especially in large joints, like the knees and Achilles and back and neck and that sort of thing. So. So that was the, the third thing. and then of course, along with all of the physical stuff came the anxiety and, I mean, mental illness is pretty much in my opinion, like impossible to avoid when you're like disabled and you don't know how to explain your symptoms. So, so yeah, all that fun stuff came along with the physical symptoms. So. By Monica: [00:03:30] the way, if I laugh and someone says that it's at a wrong point, I just need to explain she's the cutest cat on her lap right now. He keeps jumping up and batting and I swear I am not Abbey: [00:03:39] laughing at
