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:
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.
Radio Silence: Adventures in Leaving a Physician’s Practice
Recently, I left my rheumatologist’s practice. There were two major reasons for this: I live 7 hours north of the practice and no longer travel south, A, and B, major communication breakdown.
It took me over a month to get a single refill of Kineret and countless voicemails returned—something that a single phone call and a small amount of paperwork would have resolved. I went without Kineret for weeks in April.
In my leaving the practice, I need my medical records and a referral to a clinic closer to where I live. I have called my rheumatologist’s assistant every week for the past three weeks (today marks week three), leaving my reason for calling, my name and number, etc.
No response. I had the new clinic fax a referral form last week. No response.
These administrative issues and breakdowns in communication within a physician’s practice have real-life consequences. We’re not just talking about a referral form that gets delayed or a phone call that doesn’t get returned: we’re talking about a patient whose care is being delayed while they are not well. This is my life. I’m in an active flare that seems to be intensifying by the day, and would really like to establish myself in a clinic closer to home. Without this referral, I cannot receive care.
How this is seen as not important enough to address within a 21-day period is beyond me. I get that this practice is extremely busy. I understand my physician is working hard, is likely stressed, possibly underpaid and understaffed. I understand—the system makes it terribly difficult for providers and that is not the fault of my rheumatologist by any means.
But at the end of the day (or a 3-week period…), when that phone call doesn’t get returned and that referral form doesn’t get faxed, who goes home with a paycheck and who goes home with pleurisy..?
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,
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.
June 5th Ignite Speech at Stanford School of Medicine MedX Design for Health
I am so excited to announce that I will be flying out to Stanford School of Medicine to speak on June 5th! You can watch live by tuning into MedX Design for Health at 6pm PST (9pm EST), but more importantly, you can join the conversation via a live chat using the #MedX hashtag. We will be taking questions from the class as well as online audience, so please tweet me or the moderator (whose twitter I will link shortly) your questions or comments.
I’m honored to have this opportunity to share my story and I hope everyone here in the Tumblr patient community will watch and join the conversation. We’d love to hear what you have to say—your story and your input matters.
More details to come soon.