post in honor of international self-care day 2021. My whole life changed the day my rheumatologist shifted from trying to recruit me into rheumatology to telling me that my body could no longer both survive lupus and complete med school. While the six-month diagnostic process of hospital stays and doctors’ visits was traumatic at sixteen years old, we were able to get the lupus under control. I continued on with life without genuinely recognizing the ticking time bomb inside me. My entire relationship with lupus changed when I had a massive flare in medical school. I could not work or engage i ..read more

Do you ever run into friends demanding more of you than you can give? I've always found it interesting how life events challenge or strengthen friendships. Some friends step up. Others can't handle it and disappear. But what does stepping up really mean? For some of my friends, it's meant that they double down on what they were already doing - or whatever they have already decided a good friend would do. For others, the ones that have truly taken the time to understand my new reality, it has meant adapting to my new reality with me. Ultimately, no matter whether they adapted or not, a friends ..read more

When my lupus flared into the worst flare of my life... I was living half-way around the world in a foreign country and trying to survive medical school. I felt lost and alone. So I turned to the internet. I made a slew of amazing friends on Twitter - many of who I'm still friends with today. Last year, I created an Instagram account for my dog Ollie and started posting there about my lupus journey too. With so many of my most supportive friends existing in virtual settings, I often find it hard to disconnect from social media. I always feel like many of the people I rely on are there... and ..read more

Did you know purple butterflies represent lupus? The classic lupus rash appears in the shape of a butterfly across our faces. Butterflies symbolize hope. Hope for a cure, hope for relief, hope for answers about what causes lupus. But butterflies weren't always butterflies. We forget that they were fuzzy little caterpillars. And then stuck inside weird little cocoons. We only see what they look like now. Living with lupus is like that too. A recently diagnosed lupus warrior messaged me the other day and said that I seemed more put-together than she feels. I think getting diagnosed with lupus i ..read more

Do you ever wonder what your past self would think of who you are now? 10 years ago, I was on my second year of being too sick to work. My second year after being forced to leave med school because I was too sick to continue. There's some definite irony in the fact that the sick, who best understand what it's like to be a patient, are often too sick to be doctors. I didn't know what I would even want to do after years of working toward and being in med school. Fact is, I didn't even know whether I was going to be able to work again. I never could have predicted that I would go on to get an ad ..read more

Sometimes the best self-care is trusting that you know your body and advocating for yourself. A huge challenge for people with invisible illnesses like lupus is that we're constantly being questioned. Doctors inevitably think we're making up our symptoms. While I was being diagnosed, they sent me to a psychiatrist who told me it was school stress and put me on antidepressants. It wasn't - but many of us are told it's all just in our heads. Family questions us. If we're juggling a job, surely we must be well enough to keep our houses pristine and not miss any family events? We can't - we use u ..read more

The hard truth about living with a chronic illness is that you often can't do everything you previously could. Plus you have a bunch of new stuff on your schedule: treatments, medication times, doctors appointments, the list goes on. So how do you juggle it all? My biggest frustration is that after 18 years, I still struggle with balancing: work, social, me time, and chores. Here are few things that I've found work well for me, but I hope you'll share what works well for you in the comments below. The goal is to create a safe space to share and to learn from each other! Consider the drain: a ..read more

What would you pack for a day at the hospital? I have to go to Into the hospital today for an iron infusion and thought I'd share some of the essentials that I pack for days when I have tests scheduled or need to spend the day at the hospital. They may seem like small things, but they help make these less than enjoyable days slightly more bearable. 1. Comfy clothes. Hospitals are cold so warm layers are essential. I like to wear a cardigan or zip up hoodie to make blood draws and IVs easier. 2. Entertainment. Waiting rooms are boring. So is waiting for an infusion to drip into your veins. Som ..read more

If someone had told me 20 years ago that I'd be happy to get new diagnoses I'd have told them they're nuts. Who wants more diagnoses? Well, people who can't get treated because the doctor's don't know what's wrong with them do. Or people who can't be treated because technically their test results are within standard ranges. I recently gained a new diagnosis. My whole life, my doctors have been testing my thyroid function. I have had all the symptoms of a hypoactive thyroid, but they couldn't treat me because my test was always just barely in range. Until... it wasn't. Suddenly my thyroid test ..read more

What does "sick/ill" look like? What does "disabled" look like? Out of curiosity, we asked our Instagram friends what they expect to see when they hear someone looks "sick/ill." Here are some of the responses: -"pale" -"looks tired" -"like you couldn't get dressed" -"pasty & feverish" -"still in bed" -"swollen face" -"idk everyone looks different. it looks like nothing?" That last answer was spot on. Disabilities and illnesses can take many forms and they're not always visible when you look at someone. One of the most common comments I hear is "but you don't look sick to me." It's such a ..read more