More Voices for Lupus Awareness Month
Updated: May 26, 2020
Interviews with the authors of Despite Lupus and Getting Closer to Myself
As we continue in our series for National Lupus Awareness month, we had the privilege of interviewing two more Lupus Blogger - author Sara Gorman and Leslie Rott, PhD. We hope these conversations connect our readers to a deeper understanding of living with chronic illness, and we hope visiting Sara and Leslie's blogs help ease feelings of isolation during these times. I am hugely thankful to both Sara and Leslie for sharing their stories and their time with The Client Corner, and wish them and all our readers comfort and health this spring.
The interviews below represents the one individual's unique experience and is not a recommendation or endorsement of any particular therapy, course of treatment, or medical advice.
Ph.D. Sociology, M.A. Health Advocacy
Author of blog Getting Closer to Myself
CCN: Thank you for spending time with The Client Centered Network and The Client Corner readers. We found you when we were looking for Lupus bloggers, but that of course doesn't define you. Tell us more about yourself - you have a PhD in Sociology and a Master's in Health Advocacy, what led you to pursue those?
LR: I do. I actually completed the PhD first. I got sick during my first year of graduate school, and while I ultimately decided that going the purely academic route is not what I wanted, I was determined to see the PhD through until the end. Based on my experiences as a person with a chronic illness, I decided to pursue that passion in health advocacy.
CCN: We understand that people living with chronic conditions interact extensively with the healthcare system - everyone from physicians, to lab technicians, to schedulers, to pharmacy clerks. What parts of these interactions are most frustrating, and what interactions have been most helpful or supportive?
LR: I think what's most frustrating is when these various entities fail to see patients as experts. I may not have gone to medical school, but I am the expert of my own body, and 12 years living with lupus and rheumatoid arthritis have taught me A LOT. What's most helpful and supportive is when these entities truly listen to patients, attempt to understand their experiences, and learn from them.
CCN: How has the COVID-19 outbreak impacted your ability to make appointments, receive care, or get labs done? You write about shortages of your prescription medications due to the crisis, how are you managing that?
LR: This is a scary time for everyone. For me, pretty much everything has been cancelled. I wrote in a blog post that, in a way, I feel normal for the first time in 12 years, because I'm not flooded with doctors appointments every two to three months. On the other hand, I have had some health concerns come up that I am trying to table until my next schedule rheumatologist appointment, which will likely be via telehealth. Not sure how my rheumatologist will be able to get a good feel for my situation being unable to manually manipulate my joints, but we'll see how it goes. I do worry how many of us with chronic illnesses will fare when we come out of this. Right now, going to the doctor feels very, very risky. As far as meds, I'm managing, but I know many who aren't.
CCN: I really liked your post about every person being a 'clinical trial with an N of 1'. Can you tell us more about this concept, and any advice for those struggling to find the right treatment or care team for them?
LR: I've had many experiences over the last 12 years that have taught me that no matter how "tried and true" a treatment is, it might not work as expected for you. It goes back to patients being experts in the care of themselves. I believe firmly that treatments fail patients not the other way around. I don't believe that patients fail treatments and I wish that this is a phrase that we would dispense with. After a very lengthy stretch of having my treatments work really well, I'm back to a point where I think I need to sit down with my doctor and re-evaluate. Unfortunately, COVID is complicating things, and I'm not going to sign myself up for more immunosuppression right now. I think no matter what, you have to keep fighting, whether it's for the right doctors, the right treatment, or both. I've had several doctors that I couldn't stand. You don't have to stand for doctors that don't care about you.
CCN: You write that you have both Lupus and Rheumatoid Arthritis. What symptoms of these conditions impact your daily life the most? On 'bad' days, what helps you through?
LR: Joint pain and fatigue are the big ones for me. I also suffer a lot with headaches, gastrointestinal issues, and joint swelling. On bad days, I have to allow myself to rest. Depending on pain levels, heating pads and blankets really help. I am super type A, so giving in to the pain and fatigue was very hard for me in the beginning, but if I don't listen to my body, I'll end up in an even worse position.
CCN: Your blog has a clinical trials widget. Can you talk more about that and any other resources (sites, blogs, support groups, etc) you suggest people living with Lupus or wanting to educate themselves check out?
LR: Though I haven't participated in clinical trials myself, they are extremely important in advancing the treatment of lupus, rheumatoid arthritis, and many other illnesses. A lot of people don't know where to even begin looking for trials. That's why I have the clinical trial widget. The Lupus Foundation of America and Arthritis Foundation are good places to start. RheumatoidArthritis.net is another good place. Personally, patient blogs were the most important thing for me when I was first diagnosed, and continue to be incredibly useful. When I first got sick, I felt so alone, like I was the only person in the world dealing with what I was. Ultimately, that wasn't true. I found that through other patient blogs, some of whom I've become lifelong friends with.
Blog and Book Author - Despite Lupus: Living Well With Chronic Illness
CCN: Your blog is great and has a little bit of everything - medication education, clinical study information, and pill organizers. Tell us a little bit about yourself and what inspired you to start writing about your experience.
SG: The goal of my writing, in both my book and on my blog, has always been to share my trials with lupus, so others might learn from my mistakes, as well as my successes. Diagnosed at the age of 26, it took me several years to figure out how to balance my fiery, independent, get-it-done attitude with a life with lupus. My initial approach of pushing through pain and ignoring the severity of my symptoms was fruitless. The more I pushed, the more my disease flared. My body was crying out for a change, so I decided to try a new approach. I started making lifestyle changes – little ones, at first, then bigger, more life-altering decisions – and I immediately noticed an improvement in my symptom activity. The more accommodations I made, both mentally and physically, the better I felt. It was as if I had unlocked the secret to successfully living with lupus, at least for me! I continue to tell my story so that others might benefit from my years of managing my illness.
CCN: We understand that the journey to a Lupus diagnosis can be a long and winding path. Can you share with us how long it took to arrive at your diagnosis and any obstacles you faced?
SG: My diagnosis story is somewhat uncommon, as it only took six weeks to get a diagnosis. It usually takes months, if not years, for people to finally reach a lupus diagnosis! Because of the acute symptoms I was experiencing, including severe chest pain, which x-rays revealed to be pleural effusion (fluid around the lining of my lungs), accompanied with fever, joint pain, swelling, and my positive blood work, I went from my primary care physician to a pulmonologist to a rheumatologist within weeks. I am thankful that it took such a short period of time to reach a diagnosis. But because my symptoms had come so quickly – I expected them to go away just as quickly. The concept of having a chronic illness - that these symptoms, as well as others, would persist, and ultimately impact every aspect of my life - was completely foreign to me. It was a long, difficult adjustment to come to terms with this fact.
CCN: When you first started the blog or when you first shared your diagnosis with others, did you find that people had an understanding of Lupus? Did you find that people had any assumptions or misconceptions about the condition?
SG: When I was diagnosed in January of 2001, there was very little about lupus in the media, and social media channels were limited, so I was unfamiliar with the disease, its symptoms, or the complications of the disease. The medical resources online existed, but were often outdated. In fact, my pulmonologist discouraged me from doing any lupus research online because of the misinformation too easily discovered back then! Thankfully, things have changed considerably. Reliable, accessible information about the disease has significantly increased, and there are more lupus patient blogs, patient-focused communities, and education sites popping up than ever before. Today, the job of the lupus patient is to sift through all that is available, overwhelming as it may seem, to find nuggets that are relevant to their experience: constructive information, applicable data, and honest opinions that ideally foster hope, and promote well-being.
CCN: How does living with Lupus impact your daily life? Other than medications, have any other strategies (meditation, mindfulness, yoga, etc) helped you cope with daily living with a chronic illness?
SG: Throughout my years with lupus, symptoms like fatigue, joint pain and swelling have significantly impacted my activities of daily living, for periods of time and at varying degrees. Some days, I struggled to bathe myself, get dressed, or fix a simple breakfast. Other times, I could manage at home, but buckling a seat belt, gripping a steering wheel, or punching buttons on a smartphone were painful, excruciating tasks, bringing me to tears. Of all the symptoms that I’ve experienced, the one that still lingers today, despite the fact that my disease is well-managed, is fatigue. To combat it, I take a 90-minute nap every afternoon. My daily nap allows me to refresh and recharge, and to function for a full 14-16 hours. Without it, my day would end by 4 or 5pm, due to complete exhaustion! As well, other symptoms like joint pain and swelling are kept at bay, simply because I'm allowing my body the downtime it needs. Along with my nap, I exercise 5-6 times a week, and eat a fairly healthy diet. All of us can benefit from diet and exercise, but I’ve found that it is paramount for my mental and physical wellbeing with lupus!
CCN: How often do you have to interact with the healthcare system to access your treatments (pharmacies, clinic appointments, labs, etc)? How has the current COVID-19 outbreak impacted your ability to get the care you need?
SG: Because my doctors’ appointments are currently spaced 3 months apart, I haven’t experienced any difficulty due to COVID thus far. I also haven’t experienced any difficulty obtaining prescriptions, but I understand it has been a problem for other lupus patients.
CCN: What is one thing you wish everyone understood about living with Lupus?
SG: I think many fail to understand that living with a chronic illness requires a daily commitment to living well. All the little decisions I make each day - how much I try to accomplish, how much stress I allow to creep into my work, or how many hours I wait until I take a nap – they all impact my disease activity. If I try to do too much, get too stressed, or wait too long to nap, there are consequences. My body reacts, my symptoms increase, and I risk a flare. So despite the fact that I look normal, happy, and healthy, not a day goes by that I don’t think about living with lupus.