What does it mean to make better friends with your body when you are also managing a disease process or dealing with an unpleasant diagnosis? Britt Johnson of The Hurt Blogger talks about life with autoimmune arthritis, how movement helped her to rehabilitate her body, her work to facilitate more patient-centered care as a bio-consultant and e-patient scholar, and her ambitious training to meet her mountaineering goal of one day climbing Denali.
Britt defines what the term “autoimmune arthritis” means as differentiated from osteoarthritis, which is what most people are familiar with and which affects a particular joint.
Autoimmune arthritis, as with other autoimmune diseases, is one in which your body is attacking itself. This means it can affect anything in your body- head to toe, as well as all of your organs.
She describes how long it took to get her diagnosis and the sequence of events, or triggers, that led to the beginning of symptoms.
She began showing symptoms when she was 7 years old, but it was written off as growing pains or being a hypochondriac. It wasn’t until her teens that doctors started considering if it was actually a legitimate health issue.
Many doctors told her she had to get worse before she got better. Britt talks about how this is a horrible way of thinking.
She was almost 21 when she finally got her diagnosis from a doctor she had flown out of state to see. She began on disease modifying medications that day.
She fights a great deal for children in that same position today.
These days she is doing pretty well. She is not in remission, and is still managing a lot of fatigue, pain, and swelling. It is managed with many treatments: 2 weekly injections of Orensia which changes the way her immune system functions, Methotrexate which is low dose chemotherapy, and steroids which she is trying to get off of.
A year and a half ago she recommitted herself to doing everything in her power to get better. She took a look at how she was treating her body and her mind.
She became vegan because she had tried many other diets and that was the one that worked best for her.
Using the app My Fitness Pal (in resources) as a food diary to see if she is feeling bad one day what may have set it up.
Britt describes her process from blogging to beginning to work as a patient advocate.
She was asked to do a patient film (in resources) with Stanford Medicine X conference and was accepted as an ePatient scholar in 2012. She’s been on the Medicine X ePatient advisory board since then. This gives her the opportunity to meet with everyone from researchers, to designers of technology like the physical products we may carry around, new electronic health records, etc. It’s all about elevating the patient voice.
Recently in her work she’s asking, “Why did healthcare get away from the patient?” It’s not focused on the wellness of that patient or what happens to that patient when they go home at the end of the day. Doctors see us for a small blip of our lives.
Britt tells about how she woke up with a severe migraine with slurring speech and how when she went for help initially they thought she was on drugs. It turned out to be a rare form of complex migraines. It took about 9 months to get that under control. Being house-bound was when she started her blog- and becoming an advocate sprung from that.
We got so far away from thinking about the patient, but now there is this birth of the empowered patient. Britt explains that she realizes that it’s intimidating for a lot of people in healthcare. On both ends- patients and providers- are afraid of sharing. But if we can take that fear out and have these really real conversations that’s where change happens.
We [patients] inherently understand things that would expedite the system. If things are working better, it’s going to work better for them financially as well. Patients learn this base knowledge that is being taken for granted or not being utilized.
Smart Patients company- trying to take these conversations that patients have and turn it into something tangible that can improve the system.(in resources)
Comitting her self to getting stronger led to moving more. During a bad flare up last spring when her knees were so swollen she couldn’t walk up the stairs to her bedroom, she started walking again outside just a couple of blocks and waited to see how her body did and the next day. The inflammation in her knees was a little better and her movement a little better.
Little by little she made her way to running her first 5K and then a few more.
Once she found that she could set these small goals and accomplish them she started dreaming again and rekindling this idea she had had as a teenager to climb Denali.
Last fall she started committing herself to getting physically conditioned for it though it is still a few years out.
She’s been running, swimming, and hiking. With the movement she has found that she’s rebounding much more quickly.
In two weeks she leaves for Colorado to hike a couple of peaks that are over 14,ooo feet.
Find what works for your body, and challenge some of those beliefs out there about your disease. Patients know what is best for their body.
Britt’s reach goal is Denali… what’s yours? It doesn’t have to be big and audacious, though it certainly can be. But what is one thing you want to commit to working towards right now?
In the case of something that is a smaller goal- like mine of learning how to climb up a (limbless) tree– can you just write it down and commit to working on it with frequency? I started my process two weeks ago and I would just get my feet and arms on the trunk and hang there at ground level. But now I’m actually climbing up the tree! To the point that I figured out that I need to know how to climb down, since there is actually a height at which you cannot just jump off! Oops. (I am still in one piece…)
In Britt’s case of a large, bold goal- can you write it down and then also write down the small steps (really, really small daily/weekly/monthly) steps you can take to work your way there? Britt started with walking around the block and is now off to Colorado to climb a couple of 14’ers!
Want to know the top secret, patent-pending secret to both my and Britt’s success? Small, incremental progress that was attended to on a nearly daily basis. Now go have some fun!
Britt’s 2012 Stanford Medicine X talk and ePatient profile:
Smart Patients online community