Q:If you could go back and do things differently when you started university or tell your freshman-self some advice, what would you do/say? I start college in a few weeks with chronic pain and I'm very nervous about new challenges and how to manage my disease away at school.
Ooh. Loaded question. I’d do a lot of things differently, very few of them having anything to do with my health.
Things I’d tell my 18 year old freshman self:
- Get involved with your Student Disability Resource Center ASAP. Do not wait until your symptoms get out of control, don’t feel ashamed or like you’re abusing the system. I’d have reached out to them for help much sooner than I did. Use the accommodations you’re offered. If you find you don’t need to use them, great! But keep them as a safety net. Trust me on this.
- Put a lot of effort into getting to know your professors. Again, if I had asked for help instead of feeling embarrassed and shutting down, I probably wouldn’t have failed stats 3 times (perspective: I aced the class the 4th time I took it and asked for accommodations and now I really like stats!). Now, I make a point to get to know my professors, share with them a tiny bit of what I’m up against physically, and it has made a world of difference. I don’t hesitate to miss class when I need to, I know I can stop in and not feel like I’m offending my professor if I need to be caught up on some work, etc. They have appreciated me keeping them up to speed with where I’m at, understanding my limitations, and are able to tell me what they need from me in order to make things work. Also important: write thank you notes at the end of each semester!
- Get involved, but pace yourself and be particular about where you invest your time. I wish I had done this earlier. Join greek life, join an organization, club, academic fraternity, whatever, but find one you really love and give it your time. Physically, I don’t have it in me to give 4 or so organizations my time and energy. I choose two and I wish I had thought to do this when I was a freshman instead of jumping from group to group and half-assing the effort I gave to them. It can be tough to make friends when you’re chronically ill for a multitude of reasons, but if you can harness some of your energy into a smaller number of extracurricular groups, you might have an easier time! Don’t spread yourself too thin, find something you’re passionate about, and get to know the people who share that passion!
- Schedule your rest. That might sound odd, but now that I’m in upper level classes, my days are incredibly long and busy. If I don’t schedule rest into my routine, I won’t rest. This usually results in a 2am crash and burn in a Strozier library study room and it’s not pretty. If your major, classes, and schedule are demanding, make sure you get into the habit of scheduling an hour or two of mandated rest. It might sound a little weird, but it’s important to make your health as high a priority as your new social/academic life.
- Not everyone is going to understand your limitations—and that’s okay. If I could go back, I would stop apologizing for my physical limitations in social situations. Yeah, you might have to plan your outtings better (is there seating at that bar? Do we have to walk far to the club? etc etc) and others might find it annoying. That’s okay. Chances are, anyone not willing to understand, accept, or welcome how you handle your medical situation isn’t someone you want around. There will be a ton of people coming in and out of your life over the next little while—it’s okay if some of those people don’t stick around very long. Make no apologies for your disability or disease.
- Remember that going to college is a huge change and the transition takes time. Some people adapt right away, others take a year to feel comfortable. It took me two and a half years, believe it or not. And if I had given myself the time to adjust instead of beating myself up for my limited abilities and the challenges they posed, I probably would have been a happier 18-20 year old. College isn’t really like the movies. It’s okay if you hate it at first—it can be an overwhelming experience. It’s okay (and dare I say, normal) if your body freaks out in response to a new living situation and routine. Give your mind and body some time to adjust, and ask for help if you are struggling.
Good luck, Anon. I know it’s a scary change, but you’ll be okay! You can do this! Please submit some more specific questions if you have them, and check out these other posts:
Don’t forget to care for your caregivers. I was reminded of this today, of just how much work it takes to be in a caregiver role, and how lucky I am to have the loved ones I do. It’s a reminder that I think we, those of us that are chronically ill, need to hear from an outside source every once in a while.
Don’t forget to thank the friends, boyfriends, girlfriends, husbands, wives, and other family members that give their time, emotional and physical energy, love and support.
It’s unbearably difficult, exhausting, and painful to sit back and watch as someone you love suffers in any capacity.
So here’s to the caregivers. Don’t forget to tell those around you that you love them, that you appreciate them. Give them a break the way you give your own body a break when it needs rest.
And while you’re at it, watch this fantastic ignite speech on Patient-Caregiver Relationships by Afternoon Napper. It will give you chills and a massive dose of perspective.
One of the welcome shifts under way in medicine is the move towards “shared decision making,” where hubris and hierarchy give way to humility and equality.
American Society of Health-System Pharmacists
There is yet another Methotrexate shortage affecting patients. If you’re due for a refill any time soon, PLEASE call your pharmacy and make sure it is available or start hunting for places where it might be available. More details in the link provided.
Q:Does it ever make you frustrated that your diet didn't cure you? I cut out everything that people suggested and it didn't significantly change my joint pain. I feel like a failure in some way. I guess I had held out hope that changing my diet would do more for my autoimmune issues.
YES. Yes, I know that frustration all too well.
A diet not being a cure is not your failure. Your body did not fail! And the diet did not fail either! Diet is a great tool and treatment to help reduce inflammation—especially if you have specific food sensitivities—but it is by no means a cure. If a gluten/whatever-free diet could cure all autoimmune diseases, don’t you think we would be able to do away with biologics and other medications?
Does your diet have other benefits and is it worth staying on said diet for the benefits? If so, great. That’s a huge achievement—lifestyle change is always difficult.
I’m really sorry to hear that diet overhaul wasn’t a game changer for you. I know how hard that must be for you. I get where you are coming from—I don’t think I realized how much hope I had been holding onto until my own diet didn’t magically reverse my inflammation. But, that’s life. And that’s autoimmune for you. What works for some will not work for everyone. Remember that your disease and treatment is not a one-fits-all thing, and that the success of others (in this case, success with diet as a treatment) is not your failure.
I know it sucks, anon, I really do. If you ever want some other dietary resources, feel free to message me. Sending you a lot of love and wishing you nothing but the best.
There is a thin line between a “new normal” with active inflammation (I am never entirely pain or symptom-free) and a “big” or “full on flare. For the past few days, I’ve been riiiight on the edge of crossing that line. My fatigue caught up with me in a way it hasn’t in quite some time and my GI symptoms have resurfaced. It’s not uncommon for me to flare when the summer heat (and my stress level) starts to get intense, but I know where this is headed.
So today, I quit.
I quit a commitment I made to a volunteer position a few weeks ago.
It was demanding, ~9-10 hours a week + the studying for the training. It was challenging me and I really believe I would have benefited from sticking it out. But, something had to give.
Learning how to take a step back without feeling inefficient, incapable, incompetent has been an enormous challenge for me. I’m still learning. Last month, I reached out to friends to ask them to take the lead on certain projects. Sent emails to certain mentors/leaders to ask them to support me taking small steps back. It feels inherently wrong—I have spent my life swimming against the current; to suddenly change course mid-swim feels wrong. But the way I grew up was “wrong.” I don’t always have to swim against the current. I don’t have to struggle—there is not always success or strength in the struggle.
I want to give 100% to Medicine X. I want to give 100% to advocacy. I want to give 100% to academics. I want to give some serious effort to my social life and community work. And perhaps most importantly—I need to give my body 100%. I can do these things, but it’s a delicate balancing act.
I did the right thing, made the healthiest decision for my body and mind, and this isn’t “failure” or “incompetence.” It is my new normal, and it’s okay to embrace my new normal instead of fighting it—even when others do not understand the way I delegate my time and energy.
I was able to see a health decline incoming and take proactive steps to (hopefully) prevent that decline from turning into a major downward spiral. That’s a little victory as far as I am concerned.
I am tired. I have been tired.
So I quit. I’m sitting this one out. Letting go. And that’s okay.
I’m wondering, how many of you struggle with finding balance? Do you struggle with saying “no” or taking on too much? How do you overcome this or learn to balance your priorities better?
Stanford School of Medicine Design for Health
The last Design for Health class of the semester will go live at 9PM EST/6PM PST here! My speech is in the first 5 or so minutes of the class, but please watch the duration of the program—it’s a fantastic watch for patients and providers alike. Med students, specifically, this is for you.
- Each class is accompanied by a live discussion online using the hashtag #MedX.
- We will be taking questions from twitter, so please tweet Chris Snider @iam_spartacus with your questions or comments.
- Med students/providers looking to preserve your anonymity: join under a pseudonym and send your questions—we need to hear from you, too, not just patients.
A huge thank you to everyone who submitted photos. unfortunately, I did not receive any input from health professionals or health students. But the patient responses were absolutely fantastic. I was unable to include them all, but the ones that didn’t make it in will be included in my speech slides in September.
I hope everyone will tune in,
Do you want your photo in my presentation at Stanford? Representing Tumblr Patients and Medblr at MedX
As mentioned, I am giving a speech at Stanford School of Medicine next week. Much of my speech will focus on giving patients a voice in our deeply flawed healthcare system and the communication breakdown between patients and providers. This means I’ll be sharing my story and discussing what it’s like to be invalidated by physicians for years, etc etc etc.
I would like to include YOU, the tumblr community, into my speech next week, and to do so, I want to include your photos in my presentation.
This is your opportunity to get your message across.
The challenge: take a selfie with a piece of paper. On the piece of paper, write or type a short message you would give to health care providers, designers, other patients, loved ones, and future health care providers/medical students.
Some examples might be "look outside of the box" or "listen more" or "I am the face of (whatever disease here)." Even something like “let patients help” or “I deserve to be heard” or “Do not invalidate my pain just because it is not visible,” whatever. Anything you want to communicate, you can.
This is an opportunity for you to say what you want to say and have it broadcast on a big platform—I really want your messages to be echoed through this speech because you have all been an integral part of my journey. I wouldn’t be doing this without the social support I get here.
I’d also like to extend the offer to medblr: med students and current providers: what do you want to say to ePatients? Of course you can send me a selfie without a name attached through a made up email address to preserve anonymity. Neither myself nor anyone watching the speech will know who you are or if you have a blog, etc. I will not be identifying anyone and the photos will be small—made into a collage. Your choice—the offer is there. Cough cranquis cough. Maybe the message is "we do not have all the answers" or "we are doing our best in a broken system," again—this is whatever you wish to communicate to your patients.
I would not have found my own voice if you had not let me foster it here in this community, so please help me echo the voices of all of us next week.
- All photos have to be sent to my email, email@example.com, by Monday evening to be included. Please include “Photo project” or something in the subject line!
Not Just Arthritis: Honoring Two Rheummates
Today the #rheum community lost two of its rheummates.
I’d like to take a moment and honor them. Maybe you pray. Maybe you just give them a moment of your time mentally. Whatever it is you do, please do it.
This disease is not “just arthritis.” It’s not just joint deformity and a bottle of Aleve. It’s vasculitis. It’s heart failure. Behind the statistics are real people leading very real lives.
It is never “just arthritis.” Patients like Emma and Ali deserve more. They deserve better.
Please send your love to their families in a tweet, comment, or just a passing thought.