• Lupus develops when your immune system attacks your own tissue and organs.
  • It is a chronic disease that doesn’t have a cure.
One of the first pictures taken during our annual company retreat, 2019. As you can see, my face here is more swollen than the first picture due to the corticosteroids that I’ve been taking.

But if you prefer to watch a video instead, click here:

 

Question your beliefs

Whenever I was feeling physically tired, it dawned on me how much I’ve demanded from my body over the years. Having 12 to 15 hour-long days was perfectly normal to me; I was a student-athlete, so in school and university I was studying and training every day. In fact, I began training for sports every day since I was 9 years old. But what was going through my mind? I was always pursuing a clear objective, winning a tournament, doing my best in the Colombian national soccer team, earning a scholarship.

Question your priorities

When we go through important life events, we tend to wind down back to essentials. Being diagnosed with Lupus was definitely an important life event for me. It allowed me to review the priorities around me. I used to put other people’s needs first, and leave my own personal wishes, desires, and priorities last. So I decided that my physical, mental, and spiritual health should become my top priorities. It was important to establish my new priorities, but even more so to openly talk about them with my family, my partner, and my boss (in my case the board of directors of Bunny Studio). This also taught me that I don’t have to figure out everything right away. Instead, I worked with all of them in different ways to build my new normal based on my new needs and priorities.

Allow yourself to feel

I usually didn’t have the time or the need to stop and feel. Feel my body, my emotions. In fact, my body gave me a lot of signs of tiredness and stress, but I was not paying attention to them. When I got diagnosed, it was important for me to allow myself to feel sad. Usually, the first reaction I had was to get distracted because “you’re not supposed to cry”. But a mix of me challenging my old beliefs, medicine that lead me into a depression, and physical tiredness allowed me to finally surrender. To surrender and feel ashamed for not putting myself first, for not taking good care of myself. The grief of losing that invulnerable and idealized idea of myself, to surrender to a new me who feels pain, weakness, emotions, and feels scared about the changes that this new normal could bring. Surrender to Lupus itself and open up to its message. From the conversations I had with people diagnosed with Lupus, all of them mentioned that allowing themselves to surrender was the key to later transformation.

Giving up control

Lupus has taught me to give up control. I used to think I could control everything: my schedule, my mood, my body, my emotions. Lupus brings a lot of uncertainty; it can affect different organs in your body, so you have to go in for constant check-ups. You don’t really know if it is going to react well to corticosteroids or how long the process is going to take, you don’t really know when the next flare-up will happen or exactly why. You don’t know whether you are going to have a “good” or “bad” day tomorrow. If you are going to have enough energy to complete what you planned for.

Leading a workshop when I was still CEO of Bunny Studio during our annual company retreat, 2018.

Acceptance

Acceptance is not easy, I used to think that acceptance meant resigning yourself to it. I found myself fighting against such an idea; Lupus was not the exception. My first reaction was to fight Lupus and what it meant. Initially, I saw Lupus as my enemy. It was making me feel weak, unreliable, incapable of doing anything. I was feeling physical and emotional pain, but Lupus was only mirroring an internal conflict between two opposing sides of myself: the warrior who can do it all and will take over the world, and the peacemaker who doesn’t want to fight anybody, only to love. One that wants to do everything now and only trusts its rational mind; and the one who trusts life and its own body and emotions. It took careful introspection and emotional work to accept that Lupus is just an emissary that came to tell me that I’m, in fact, both.

The new normal

The following are actions and tips I believe were key for me when building “my new normal”, which was mainly adjusting to my new reality, priorities, and beliefs. If you are going through a difficult period in which you are being forced to create your new normal, I hope what has helped me, will help you too.

Emotional support

When diagnosed, I continued with my master’s in Gestalt Psychology. The interviews I carried out with Lupus patients were part of my thesis before graduating as a Gestaltist after four years of studying. The main conclusion was that, while all of the patients eventually did change their habits and mindsets to have a better lifestyle, it took longer for those people who did not have access to emotional support or any other emotional resources. In my own experience, emotional support was key when I was first diagnosed, and through my zombie stage as well. It was also key to figure out my new normal and achieving a much healthier lifestyle.

  • Accept that some days you won’t be able to work as you used to and learning to be ok with that.
  • Allow yourself to disconnect from the routine and work without feeling guilty.
  • Join Lupus communities and talk to people who have been diagnosed with Lupus. You are not alone!
  • Have at least one Lupus friend with whom you can talk openly about what is happening in your life.
  • Communicate and work with the people closest to you. (see: relationships)
  • Connect with yourself and your purpose. Having a purpose, and being connected with yourself helps you go through the tough times and decide what’s best for you.

Physical health

Building a loving and caring relationship with yourself can be translated into actions that you enjoy and will help you keep your stress levels at a minimum.

  • Exercise. I started off by doing a small routine one day a week and then built it up to four days a week.
  • Take breaks, maybe even take a nap in the middle of the day. I used to push myself into finishing all my tasks, even when I was tired, by telling myself that I would rest afterward. That was never the case. I always had more work waiting for me and never allowed myself to rest. Now I believe it is better to rest whenever I feel tired because when I push myself too hard, my body will shut down and I usually need one or two days of total rest to recover.
  • Take on activities that improve your health. In my case, I started getting a Thai Yoga Massage at least once a week; it helps me relax, boosts my energy, and it reduces the pain I usually feel in my joints and muscles as well. It can also alleviate any bruises and improve the range of motion of my body.
  • Food habits are also very important; I used to eat whatever was the fastest option for me. After being diagnosed I started eating organic food and cooking at home instead of ordering takeout. I realized that eating fish like salmon and tuna, as well as vegetables do have a positive impact on my body and energy levels.

Personal Relationships

Managing relationships is very important as Lupus indirectly affects those around us.

  • Use the spoon theory to explain to people that you have limited energy. Set expectations that you may have to cancel plans at the last minute, and encourage spontaneous plans as well. Make sure to explain that you can’t be exposed to the sun and while in treatment you can’t be around crowds.
  • Communicate your new priorities to your family and friends. Have open conversations about what you want, what you need, and how they can help. We do have expectations about parents, partners, and friends, but most of the time we expect them to magically know what we want or need. Communicating those expectations and needs is important; although it doesn’t mean that we will get exactly what we ask for.
  • Put yourself first! It’s likely that those around you who are not used to it will resist it. You might have to put some distance to take care of yourself. Even if you feel guilty or selfish, do it. No matter how hard it is, do it! Those who really love you will understand and support you.
  • Make sure you don’t put all of the pressure on your loved ones, as it can be hard for them to fully understand what you’re going through. It can be too much. That is why it is important to seek emotional support through professional advice and people who have gone through the same experiences.

How to work with your employer

One of the hardest topics for Lupus patients is uncertainty when it comes to working. Sadly, most of the people I spoke with ended up being fired from their jobs, quit because they were bullied by their peers (or even superiors), or simply quit because they can’t handle the amount of stress and work they were used to. Fortunately for me, I was privileged enough to be the CEO of a company, but even then, my first thought was “I won’t be able to handle this anymore”. I thought about quitting. But thanks to my doctor’s advice, I didn’t rush into resigning but instead I started a conversation with my boss, the board of directors.

  • Work along with your HR manager on a plan on how to slowly come back and incorporate yourself back into your responsibilities. If possible start trying to work towards a future where you can manage your own time.
  • What skills does the world/ your organization/ your team want and need?
  • When do ideas come to you? (Morning, afternoon, night)
  • What things aren’t as important for you? Whatever it is, try to turn it into an easy routine so you don’t have to dwell on it too long. It will help reduce the cognitive load. For example, if you don’t mind what you have for breakfast, you can eat the same every day.
  • Lock time for a contingency, as you will always have them. We usually tend to address them in our personal time.
  • Divide your big goals into smaller ones, and proactively revise how much time you spend on each of them.
  • Track how much time you spend responding to other people’s priorities instead of your own.
  • Sleep is the only area where you should not cut back on, sleep at least 8 hours. Less than 7 hours of sleep will affect your performance and increase your tiredness; several studies have shown that you will not notice that your performance is decreasing, so that is why most people do it. You also don’t want to feel tired and push yourself too hard or you will have to spend entire days recovering.
  • Plan on having days off to rest and go to medical appointments.
  • Plan on having at least an hour and a half or two hours for your lunch break; build your schedule around your most productive hours, where ideas usually come to you. Leave the other hours for meetings.
  • Actively pursue your goals each day.
  • Make sure you advance in your goals and find a system for you to keep track of your achievements.
  • Don’t passively respond to others, but instead practice proactive, descriptive, and contextual communication. If you don’t have an answer, simply say so.
  • Learn to say ‘no’ whenever you believe you can’t do it.

Remove unnecessary dependencies

Remove as many dependencies as possible. You will likely have to take a day to recover, go get tests, and then rest. If you have a flare-up you will have to take time to recover. Removing dependencies becomes essential so people get things done whenever you have to be absent. Of course, that doesn’t apply for all types of jobs and positions.

  • Build clear decision-making and accountability processes, you can use the DARCI framework which is similar to RACI but includes decision making. Make sure your team knows what decisions can be made without you and who will be the person in charge in case you are out.
  • Give visibility to your projects by having clear processes, clear documentation, and roadmaps so anyone can easily take over or know where you are at.

Reduce your number of meetings

Meetings usually take a big share of your time if you are a leader, so revise the number of meetings and the length of those meetings. Also, revise the nature of meetings; meetings should be for:

  • negotiating and resolving conflicts;
  • meeting clients or associates for the first time;
  • visually showcasing pages and receiving quick feedback;
  • building team spirit and alignment;
  • celebrating wins;
  • performance reviews;
  • personal feedback;
  • A meeting should not be set just because it is a routine.
  • No meeting should last more than 40 min.

A special thank you to Luisa Moscoso for sharing her story in this amazing blog

Please note this blog is a copy of the original published in Medium by Luisa Mosco.