After two years of learning to live with my diagnosis, I can finally see that some positive things have happened since I found out I have lupus. When I was first diagnosed, I spent most of my time and energy just learning how to get through each day. Although I didn’t realize it at the time, one by one I was making some important and significant changes that have made my life better.
1. I’ve started saying no.
I no longer say yes every time someone asks me to do something. There was a time (my entire life really) when I struggled with saying no to people. If my boss asked me to work overtime, or a friend asked to borrow money, I could never say no. It didn’t matter if I already had plans or was low on funds. It was like saying no was a skill I had just never learned. And honestly, I felt guilty for even wanting to say no. Lupus changed that.
I learned pretty quickly that lupus leaves me with an energy deficit early in the day if I don’t pace myself right from the start. Each day begins with a finite amount of energy — an “energy budget.” Learning how to balance my energy budget was a crucial skill and it took me a lot of time and practice to get it right. I can do quite a few things most days, but can seldom do everything I want to do. Some things just have to wait for the next day. If I overdo it today, it may very well take me two or three days to get back to where I started.
I’ve found that people don’t really understand — not family, friends or co-workers. I had to realize that if I didn’t start saying no, I was going to burn out quickly. It is my responsibility to look after me. I can only do that if I am able to say no when I need to.
2. I’ve stopped caring what everyone thinks.
This was a huge change. I used to worry a lot about what people thought of me. So much of my self-image was dependent on being a hard worker and being reliable. I never wanted anyone to think I was a “slacker.” For my entire career, I could count on one hand the number of times I had taken a sick day. But lupus is such an unpredictable disease: you never know from one day to the next (or even one hour to the next) what it is going to do to you. So I had to let go of my fear of others’ opinions. If I can’t get out of bed one morning because the pain is just too awful, I refuse to spend that entire recovery day worrying people don’t believe or understand.
3. I’m no longer afraid to ride the “big” coasters.
I have always been a theme park nerd. But I admit, some of those roller coasters are just plain scary. Every year when we made our way to Orlando to Disney and Universal, I would promise myself “this is the year I am going on the Rip Ride Rockit, or Hulk,” but of course I never did. Somehow, finding out and accepting I have this disease was liberating; being afraid of a roller coaster didn’t seem to make a lot of sense anymore when I compared it to the challenge of living with lupus. So I decided not to let an irrational fear stop me from doing something I had wanted to do for a long time. And yes, it was awesome!
4. I’ve stopped holding grudges.
I have learned from dealing with this disease that holding a grudge is just too stressful. And stress is one of the major triggers for lupus. As well as being the right thing to do, letting go of grudges is the healthiest choice I can make for myself. And thanks to the lupus brain fog, I just can’t spare all the energy it takes to remember why I was holding that grudge in the first place.
5. I’ve learned to “chill.”
Taking a break is not a weakness. In my pre-lupus days, I would get up before the alarm even went off and go non-stop all day long. It seemed like there were more things that needed to get done than there were hours in the day. I didn’t even take time for lunch breaks at work. Now I’m forced to take breaks just to get through the day. There are even days when I am wrung out by noon, and my 30-minute lunch break turns into a 30-minute nap. Now when I have an energy deficit, I take a break, and I don’t feel quite as guilty about it as I used to.
6. I’ve let go of vanity.
Once upon a time I looked so much different than I do now. To be completely honest, there are still days when I avoid mirrors because I just don’t like what I see. The prednisone makes my face puffy (or cushingoid as my doctor calls it), and my cheeks are red from the malar rash. I have put on so much weight from the steroids and cannot seem to get it off. I have bruises everywhere. I’m a visual mess.
On the flip side, my quality of life is good. While there are days when I still mourn the loss of how I used to look, I am grateful the medications help with the pain and inflammation of lupus. I cannot imagine where I would be today without them. The people who love me don’t care that my appearance has changed. I am still me — just a bigger, better version of me.
7. I’ve learned to accept help.
My husband says I’m stubborn. I call it being independent. Whichever one of us is right, I have learned that at times I do have to accept help, whether I want to or not. And let me just tell you: it is humbling. When I was first diagnosed with lupus, I wasn’t able to walk for more than 100 feet without having to stop and rest. I remember the rheumatologist looking at me in amazement and asking “do you realize your sed rate is 110?” I just knew I hurt. Everywhere.
I look back now and realize I could have made things so much easier on myself then just by accepting a little bit of help. But instead, I made it harder because I didn’t know how to let anyone help. My poor husband. I’ve come a lot closer to accepting my diagnosis today, but there are still times when I have to remind myself it is OK to let my husband or children do things I used to do myself.
8. I’ve quit being “the fixer.”
Every family has one. As the oldest child, I was the self-appointed fixer of problems. When my siblings needed advice or help, they called. But things changed when I got sick. I lost my focus and no longer had the energy to help like I wanted to. I couldn’t even solve my own problems anymore. So I gave up the role I had created and taken on myself. Turns out, they do just fine without me. Some days I wonder if I was ever quite as helpful as I thought.
9. I’ve started to see the value in frivolity.
A massage? Getting my nails done? A spa day? At one time I felt they were a waste of time and money. Oh my, I did not know what I was missing. It turns out the things I used to think were frivolous are some of the most wonderful and relaxing experiences for me now. I don’t know if I ever would have slowed down enough to try them in my old life. The therapeutic value of an hour of relaxation cannot be overstated. It just helps.
10. I’ve stopped saying “Someday I’m gonna…”
Like most people, I’ve always put off doing the things I’ve wanted to do until “someday.” For instance, my husband and I have talked for years about becoming snowbirds. We just figured we would do it when we turned 65 and retired. We never spent any real time trying to figure out how to make it happen now, while we are young enough to enjoy it. The reasons why we couldn’t do it now seemed so obvious and insurmountable that we didn’t even seriously try to look for ways to make it happen.
When I learned I have lupus and my doctor started talking about things in terms of “number of years,” it felt like my priorities changed right then and there. The things that had seemed so important before just weren’t anymore. All of a sudden, getting out of the cold and snow here in northern Maine for three or four months seemed entirely possible. Why not? If we wait another 10 years, I may not be able to go at all. I am no longer willing to wait.
Lupus has taught me to live for today, not for someday. And that is the major bright side of this disease for me.
Getty image by Victor Tongdee.
Being diagnosed with lupus in 2016 may have slowed me down for a moment or two, but I was determined to keep doing all of the things that I love in spite of it. That meant learning how to effectively manage the disease. I want to share with you the things that I have learned and continue to learn about living with lupus.
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