About a month ago, I wrote a post about the book, “Despite Lupus”, by Sara Gorman. I enjoyed reading the book, but was left with a lot of questions. I contacted Sara, and she was nice enough to answer my questions, to be shared with my readers in the guest post that follows.
For those who haven’t read your book and/or blog, tell us a bit about yourself.
SG: I was diagnosed with systemic lupus 9 ½ years ago, at the age of 26. There was a time after my diagnosis where I just couldn’t imagine life ever being the same again - I never thought I’d be able to have children, I didn’t know if I’d be able to work, and I really didn’t know if my body could endure the pain and suffering caused by lupus much past my 30th birthday. Thankfully, things began to turn around once I started making changes in my life to accommodate the disease, a process I often refer to as, “working with the disease rather than against it.” It was a wonderful thing once I realized that life with lupus could improve, and that I could actually do something about it.
You refer to lupus as “she”. This is very interesting. How did this come about?
SG: From the very beginning, I thought of lupus as an adversary – as an opponent that needed to be won over, conquered, and even extinguished. It was just a natural step to personify the disease because it gave me an image upon which I could unleash my frustration, anger and resentment. In the end, I think it worked in my favor, because as I came to the realization that lupus really was an entity in and of herself – I learned that if I was going to live in harmony with the disease, I needed to give her the respect, consideration, and attention she deserved.
The spreadsheet is clearly an important aspect of your illness experience, but I worry that such cataloging would make me obsessive. Is there a happy medium between not knowing anything about ones illness and knowing every single detail? What does that look like to you?
SG: Sure! In my book, I offer a full spectrum of options – in-depth vs. not in-depth; long vs. short; thought-provoking vs. one-word (or number) responses – because most certainly, not every one wants or needs to create a spreadsheet. I can assure you, however, that any insight you have into what exacerbates your illness, what helps, what doesn’t, what medications are working and which aren’t, will undoubtedly give you a leg up in trying to live well with the disease. Anything you do – be it a tracking system, a journal, or a list you keep on the fridge of things to watch for– that allows you to become more engaged, enlightened and informed about your disease, the better!
You mention going to the National Institutes of Health (NIH) for a second opinion. Would you recommend that other lupus patients seek care at the NIH or other similar institutions (i.e. Mayo Clinic)?
SG: I had a wonderful and enlightening experience at NIH, so I would recommend it highly. However, what I would recommend above all else is that if you have doubts about your treatment, have questions about the manifestations of your disease that your doctor can’t (or won’t) answer, or feel like you need to get another perspective on what’s happening with your body, run, don’t walk, to get a second opinion, wherever that may be. There are so many reasons why seeking the help of another medical professional is a good idea – it will most likely bring to light options, treatments or therapies that you and your doctor haven’t explored and could (or even should), or it will confirm that your doctor has indeed been doing everything that should be done. T hat was the case with me – I went to NIH, and they confirmed that my rheumatologist was doing all the right stuff…it was just my disease that was out of control at the time. Thus, when I returned to my doctor’s care after a couple of months at NIH, I felt a whole new level of collaboration between the two of us. I was no longer scrutinizing his every move (because I realized that he really was doing everything he could to make me feel better – it just hadn’t worked yet), and I believe he had a new-found respect for his patient. He knew I was serious about getting better – now he could really get down to business.
You talk a lot about the workplace, and the way you describe it, the company you worked for when you first got sick and were adjusting to the changes that come with lupus, was very accommodating. What advice do you have for people with lupus who don’t find themselves in such an accommodating situation, or for people like me, who are in graduate school, where the implicit response is, “If you can’t cut it for any reason, you shouldn’t be here”?
SG: My office was extremely accommodating, and I consider myself lucky. And while I realize not everyone chooses to be open about their disease, I found that being upfront about lupus worked to my advantage. How else could I have explained my prolonged absences, or my reduced energy levels, or my inability to walk from one end of the office to the other? I tried to be very proactive about addressing the difficulties I faced at work – and that is the recommendation I would make to anyone faced with a strenuous or taxing work/school situation. Realize that your productivity, your attendance, your attention to detail, your ability to function, may slip – and you need to be prepared to address those issues. I would also recommend, no matter what situation you’re in, to really evaluate your work/school situation, and if you find that there are aspects of your daily commitments that are truly inhibiting your ability to live (and, of course, by my standards, I mean live well), perhaps there are some accommodations/ changes/ alterations you can make to schedules, workload, deadlines that will allow you to get better. I would encourage you to look outside the box – thinking of options that you may not even consider feasible – if your health is really suffering. Sometimes those changes can be very difficult to consider (and even harder to make), but if it’s your overall health and wellness we’re talking about…if it’s a matter of life and death…well, then, you many have to muster up the courage and inner strength to make them, so that you can even have options down the road.
Ultimately, you end up leaving the workforce altogether and “retire”. Do you have any advice for people with lupus (or other chronic illnesses) who aren’t in the position to take such a step?
SG: I had no idea I was going to let go of my career for good when I started down the path to living well. I made the first change at work because I literally could no longer function, but I figured I’d just take some time to slow down a bit, work from home one day a week, get some rest on my shortened work days, and then I’d be right back at it as soon as I “recovered.” But once I got a taste of what it felt like to feel good…and to be healthy…and to not hurt 24 hours a day, my husband and I realized that, that existence, whatever it looked like, was our #1 goal. And that goal doesn’t have to be reached by letting go of your career. That just happened to be the concession I was willing to make in order to make it happen. Yours may be completely different – I just encourage you to look long and hard at the obstacles that are currently keeping you from living well, and decide, based upon your own personal goals, dreams, needs, and desires, which one you should concentrate on removing so that you can live better than you are right now. It could be anything – treatment you’re refusing, the tropical, sunny vacations you don’t want to sacrifice, your “life’s agenda” you’re refusing to put aside – anything that is hindering your chances for a long, productive life. I talked of this very issue in a blog post recently on www.despitelupus.com, and a woman wrote into my blog saying that while she has chosen to keep her career, she chose to concede on having more than one child, because of her lupus. She felt that was an acceptable, necessary accommodation to make, in order to live well with her disease. It’s a very personal matter, and it takes some serious soul-searching to make the right choice.
You also talk a lot about pregnancy. You mention that pregnancy has a tendency to put women with lupus in remission, so it may seem like an attractive option for that reason. You also mention your sincere desire to have a family. What was it like working around your illness and working your illness into getting pregnant, with the final result being a healthy baby girl?
SG: For me, the most difficult part about wanting to get pregnant was realizing that my personal timeline for having kids might not coincide with the timeline that my body, my disease, or my health had for child-bearing (or rearing, for that matter.) Emotionally, it was very difficult to accept that I couldn’t do anything about that fact, and that I had to stop trying in order to allow myself to heal, emotionally and physically. I had to put my plans for pregnancy on hold for quite some time (years actually) while I built up my strength, got my disease under control, and got my body in a healthy, stable condition so that I could even start trying to have children again.
By the time I started trying again, I felt fabulous about the whole thing. At peace with myself, at peace with my body, and at peace with whatever was in store for the future. There had been so much desperation and panic surrounding the process the first time…and I realized after the fact that, that was no way to bring a new little life into this world. Of course, the greatest blessing is that little girl of mine. She is an absolute miracle – and an angel in every sense of the word…even on the days she doesn’t nap.
Your book is definitely a “must read” for those newly diagnosed with lupus. What advice do you have specifically for those who are lupus “veterans”?
SG: Just like I tell myself every day, I would remind the “vets” that living well isn’t a one time event. It takes a concerted effort and a daily commitment to managing the disease. I make decisions every day that perpetuate my desire to live well, despite lupus. And every once in awhile, I make a choice that doesn’t quite fit in with that motto. But the great thing is that every day, I have the opportunity to make the right choice.
A little off the topic of lupus, what advice would you give to patient bloggers, like me, who want to get published?
SG: The great news is that there are a ton of options out there for people just like you and me who have something to say. Self-publishing was an absolute dream for me – it worked within my timeframe (I was due with my baby in October of 2008, and knew that I could make my book “happen” with the limited time I had/would have), I got to keep control of my book, the content, the cover, etc., and financially, it’s worked out quite well. The flip side, of course, is that it takes a lot of work to self-publish, to market, promote, and get your book out there. And I had to work VERY hard to keep my expectations under control during the first 3 months the book came out. I was ready to hit it hard, but given that I have lupus, I couldn’t do that. I had and still have to pace myself…and my husband reminds me all the time that I can’t let writing a book about living well prevent me from living well. Smart, huh?
You title the last chapter of the book, “Life After Lupus”. What do you say to those of us who can’t really imagine that such a state exists?
SG: My reason for writing the book – my intention for sharing my story – is to provide hope to those who don’t have it, to those who have lost it, or to those who can’t seem to find it underneath the pain, suffering, and misery that lupus has caused. I was there not so long ago – and I am here now – poised and ready to tell you that life with lupus CAN improve – and that you can actually do something to make that happen. It might not be easy, or simple, or instinctual (which of us instinctively likes “compromising”?), but there are ways to make your life with lupus better, physically and emotionally. If you walk away with one thing from my book, my blog, or this interview – believe that you have the strength, courage, and hope to live well, despite lupus.
Thanks, Sara, for humoring me and answering all of my questions, for allowing me to share your answers with my readers, and for writing an informative and patient-friendly book about lupus. We can all always use lessons about living well despite illness.
And be sure to check out my post about the book, and make sure you head over to www.despitelupus.com and say “hi” to Sara!