Caitlin Ash - Life with Lupus
I’m Cate and sharing with the CBJ Foundation my life with Lupus, but you’ll also hear some funny jokes, learn what it’s like to be 28 and living with multiple autoimmune diseases, and the realities of navigating the American healthcare system.
About my health
I’m 28 and have been (officially) living with undifferentiated lupus/undifferentiated connective tissue disease since 2014 (2011, RA diagnosed - I’ll explain later). But, I also live with type 1 diabetes, gastroparesis, fibromyalgia, bilateral hip impingements, and chronic idiopathic hives/allergies.
My day job is marketing a higher education library. I’ve been married for four years (and my husband’s a saint of a caretaker). I have a passion for getting creative, whether I’m hand-lettering or out taking photos. And recently, I picked up Pure Barre again, which has saved my sanity. I have an affinity for loud music and long drives. My goal in life is to inspire others living with complex diseases that this life can still be pretty fricken great in-spite of its challenges!
The Road to Diagnosis
The fact is... after a road that began in 2011, in 2014 I was finally diagnosed with undifferentiated lupus/undifferentiated connective tissue disease. Initially, I was diagnosed with rheumatoid arthritis - which, made total sense given my widespread joint pain, swelling, and exhaustion. In those early years, I took many of the meds I'm on today, but also tried methotrexate pills, injections, and took 3 different biologics. I've had doctors push me aside, question my integrity, doubt my symptoms, and ignore my concerns.
That day in 2014 is clear in my mind as if it was yesterday. You see, when you've been dealing with what you think is RA for 3 years (was dx'd with fibro in late 2013) but you're not getting the care you need, sometimes you wave a white flag and give up. And that's what I did between a series of bad doctors... until I was so frustrated in the doctor's office (with a scarred veteran rheum and her fellow) that I cried. I pleaded. I begged. They weren't going to change anything with my treatment or run any new tests UNTIL I started to cry. That's when they decided to move my legs around (because I had lost so much mobility with my hips and was in excruciating pain) and low and behold - they thought I might have a bilateral hip impingement. Something there prompted them to run more tests. I remember driving with my husband and laughing off lupus - "there's no way I have lupus. I'm sure it's my RA flaring and we'll get to the bottom of it."
Eventually, I received those test results, which shocked those doctors as much as it did us - disappointed with the continued lack of care we made the decision to go to John's Hopkins in Baltimore for a confirmation of my diagnosis. They were great at helping me develop an action plan for treatment and gave me the confidence to be the boss of my own healthcare back home.
The reality is... in those early years I gave up caring about my health. This is a topic that weighs on my mind constantly: living for my body versus living for me, Cate, a human being with dreams and desires. I like to joke I'm a bit doctor whore and I'm not ashamed of it.
My current rheumatologist is the fifth doctor (eighth, if you count the three rhuem fellows I was assigned between 2012 to 2017). All those doctors who couldn't give me the care I needed and deserved, fueled my confidence to say "F*** off, I'm going elsewhere." Every day is a new challenge and I wake up frequently gauging my pain/exhaustion levels. Truly, the definition of the "spoon theory."
But, the good news is, after years of hard work (and two hip surgeries) I'm back to exercising, I'm back at work regularly, I'm seeing friends again - I feel like I'm living for me again. Don't get me wrong, on a bad day looming health care costs, or the fact that I still have so much I want to accomplish, the concept of a sick day can send me to a dark place. But in the words of John Mayer, "the circle of your friends will defend the silver lining... no, it won't all go the way, it should. But I know the heart of life IS good."
Caitlin’s Life Hacks for Living with Lupus
I'm going to let you in on a little secret. No one, I repeat no one, knows what they're doing in this life. Sure, we all have plans & get stuff done, but no one person has it figured it out. I want to share with you the abridged version of how I manage (see: twirling a million plates in the air) my chronic illnesses. Let me preface: I have no clue what I'm doing. I'm just good at making my life look pretty via social media.
- Step 1
- Take your meds. Seriously, do WHATEVER it takes to make that a habit. Pill containers, basket by the nightstand, a partner who organizes it for you (😉). DO IT.
- Step 2
- Treat yo' self. Really though, "self-care" is such a buzz phrase but there's a reason. Life is short, don't waste it on shit you don't like (chronic illness management excluded) or not doing something you love (that's legal). You gotta stay sane and need a healthy vice to stay afloat.
- Step 3
- Find yourself a "Sean," aka a mental health care professional you feel comfortable sharing your every secret with and they're knowledge about living with chronic illness. Some days I can't share the dark, icky places of my mind with my family or friends, but I can with Sean. Psychology Today has a great list of professionals in your area - use it!
- Step 4
- Exercise. I know... I just punched myself in the throat saying it. But it really does help. Keep searching until you find what works for you - have fun with it. I recently got into Pure Barre (bc I'm a masochist) but find what leaves you feeling like a damn queen 👑 when you're done... even if you cursed your way through it.
- Step 5
- Stay organized. Bahahaha. I'm terrible at keeping my medical documents, EOBs, bills, etc. organized - my office is an episode of hoarders. BUT it will make life easier when you're fighting a bill, need to pay one, have collections knocking at your door, or need to get reimbursed by your flex plan. Set things up via email & organize it into folders. This has CHANGED my life.
- Step 6
- Listen to your body. If you need to take a step back & reevaluate your priorities or take a day to rest. Do it. I get a decent amount of migraines (thx lupus) & if I don't take meds immediately, I'm out. Seeing spots for weeks after a headache's gone is just not a way to live. I've left parties early, canceled plans, and yes, lost friends. But if shitty people can't handle you at your worst (cliche, I know), ditch 'em.
- Step 7
- Get a medical alert bracelet, necklace, put it on your watch band/screen, or at least a card in your wallet so people can take care of you if you (god-forbid) were ever to need it. I got mine from @laurenshopeid & wear it daily.
The Person Behind the Disease
Often I feel like I have to defend my diagnosis. Do you feel that way, too? It's the feelings that well inside me when someone says, "but you don't look sick," or "you make it look so easy." Personally, if my outside looks good, it helps me mentally overcome how my insides are feeling. But I hate it when people make assumptions or mitigate my disease, symptoms, or prognosis. I don't want to dwell in the negativity surrounding my health, but I do want people to understand the challenges and sacrifices that are required to maintain a healthy life when you're living with a chronic illness. More importantly, I want people to understand I am a person who is more than their disease(s). I mentioned being able to open up to a mental health professional - I feel like honesty is highly undervalued in communicating with medical professionals. Seriously, be honest about what is happening in your life, how you're feeling emotionally, and/or what you feel like you're sacrificing to keep yourself healthy. Don't be afraid to ask an embarrassing question or confess some undesirable side-effects you're having. You only get to go around this world, once. Don't waste it being too afraid to live the way YOU want to live.
In the meantime, here is a brief list of embarrassing, but TOTALLY NORMAL symptoms... depression, anxiety, panic attacks, lack of libido, IBS, diarrhea, missing work frequently, requiring a handicapped pass, rashes in weird places, dry skin, hives, blisters, too exhausted to shower, etc. My weakened immune system has kindly subjected me to just about any awkward symptom, infection, and situation you could imagine. And if you need a confidence boost to help you be honest with your doc, just remember I once spilled a cup of pee in my pants while doing a urine test. And yes, I had to walk back through the waiting room to leave. Yikes. 😬
Questions for Caitlin
How do you explain Lupus to people who may not have any medical/scientific background?
Simply put, I tell people it’s an autoimmune disease that attacks the tissues in the body - from my skin (rashes, lesions, sores) to cartilage (joint damage, tmj, bursitis) in my joints but it also affects my nerve endings (I have a hard time touching cold things - it’s super painful), sun sensitivity (I get blistery hives), & exhaustion.
How do you handle social stigma?
As for social stigma, I’m still learning how to deal. I think remembering who I am as a person BEFORE my disease(s) helps. And reminding myself and others how hard I work just to stay alive even if I look normal. I don’t often feel judged, but I do feel guilt about missing things or not being able to participate #fomo. My friends and family are incredibly understanding and make me feel supported in all situations, which is amazing!
Do you see life differently now?
Completely! Sometimes that makes me really grateful because I don’t take anything for granted and we celebrate really little things now. But, I sometimes wonder what my life would be like had I not gotten sick and could have stayed on the career trajectory I wanted. I try to just focus on the here and now - it’s all I’ve got!
How do you deal with demands of a job and life while having such a tough chronic illness?
Lots of planning! And transparency. I’m lucky that I have a job that’s fairly flexible and a boss that’s incredibly understanding. But, there’s a lot of communication between us on upcoming appointments and prioritizing tasks so I’m on track even if I’m missing work. I do have ADA accommodations through work, which protects me to an extent (as long as I’m able to perform the core functions of my job). At home, I have an awesome partner who understands and doesn’t demand much from me. I help with meal planning and grocery lists but he’s the one who cooks and shops. We also know what chores I can handle (laundry) and which are too much for me (vacuuming). Communication is key! And owning your limits - it’s ok to say ‘no’ to things.