Life with SLE and pregnancy – The story of Zara and her spouse

Siti Zaharah, or Zara, has been an SLE (Systemic Lupus Erythematosus) patient since the tender age of 12 in 2001. Both she and her husband, Jep were present at a Share and Care session that our Persatuan SLE Malaysia held for patients and their spouse. I was the facilitator of the small sharing group where participants share their feelings of being a SLE patient/caregiver. Zara and her husband were very friendly and they agreed to take on a short interview with me.

What were the symptoms of your SLE? How was it being diagnosed?

Z: I was healthy all the while until I unexpectedly lost around 10kg in 2 weeks. I was experiencing fatigue and recurrent fever. My mom realised that I had rashes all over my body. My parents and I went back and forth between several clinics seeking medical advice on my symptoms, and I was finally referred to a hospital specialist. I had countless blood tests taken before being admitted to the local hospital for almost half a year, where I was diagnosed with SLE. I was immediately prescribed with prednisone. I was the first case ever in my state, Melaka.  

What were your family and friends’ reaction and response after they knew that you have SLE?

Z: They were shocked and sad. I witnessed the pain they had to go through to accept it. They worried for my health conditions and my future. Nevertheless, I knew that I am in good hands as I have a super awesome family, especially my parents. They acknowledge that I am not that well but they never stopped me doing things that I want to. I have super supportive friends. They are the reason why I am who I am today.

My girlfriends since primary and secondary. They witnessed the hardship I went through. They came all the way from Oman, Singapore, Melaka and Australia ❤

What are some of the inconveniences/difficulties/pain that you suffered as a result of SLE?

Z: For the past 20 years I could not get over the soreness I experience on a daily basis. The normal joint pain comes and go; the rest is all good, I guess.

How long did you take to accept SLE? Was there a moment that made you decide that you have to accept SLE?

Z: Immediately, I suppose? Since I was a very competitive student at school, I adjusted quite well. I did have my gloomy days but it past quickly. I guess I coped well because of my support system.

My mom provided all I need, my dad cherished me, my sisters and brothers keep on telling me that I am ok. My teachers came to my house and my friends treated me normal. I had my 2nd relapse in the past. When it happened, I don’t feel sorry for myself, because I am who I am.

How long are you married now? How was the journey for pregnancy?

Z: I am married for 4 years now. I found out that I am pregnant in January 2020. I waited 4 years to be ready because I was concerned about getting pregnant with SLE. I was advised to get pregnant during the early stage of my marriage but I kept postponing. Last year, I made up my mind telling myself that I’m ready. I consulted my doctors and they were so helpful. A month after consulting them, the little bean is blessed into our life.

I try to eat more healthily, I start to eat more fruits. For now Alhamdullilah (Praise to God) everything is right on track, nothing has really changed. The only thing changing is my belly. My husband knows that he needs to feed 2 peeps and have to get ready to buy me anything that I want.

Zara and Jep’s recent visit to KL during Hari Raya

Is there anything that is quite different for a SLE patient and a normal woman who is pregnant? Any words for SLE patients who wish to get pregnant but are worried?

Z: Yes, we are different because of our auto immune conditions, we have to consult our doctors if we plan to conceive. It is important to let them know because certain medications that we are taking might be dangerous for the foetus, and pregnancy itself could be a risk for SLE flare. During the pregnancy, the monitoring of blood test result of anti-Ro and anti-La is crucial, as positive anti-Ro/anti-la will indicate a higher risk of neonatal lupus syndrome for the baby.  Precautions will have to be taken if the result is not desirable. My result is still pending but I am on hydrocloroxquine now, just to ensure that the blood flow to the little bean is sufficient.

I suppose God really understands how your body and mind works. Listen to yourself. Don’t rush things if you are not ready. I was dreadfully worried every day since I found out I am pregnant, but when the little bean starts to move actively my worries has dissipated. The most important thing to me, is that the support from my husband and my family, especially mental support.

I am now super excited looking forward to the arrival of my baby! I pray hard every day that he is going to be strong, healthy and goodness above all!

Zara’s husband, Jep is a graphic designer, and they have been married for 4 years now.

What are your thoughts when you knew that Zara has SLE?

J: When I heard that Zara has SLE, that was my first time I learnt about it. I was more curious than surprised, and could not understand what she went through before I met her.

How do you think Zara is coping, and in what areas in the normal life you think you have adapted your lifestyle so that Zara’s SLE is being considered and taken care of?

J: Actually, I did not feel that I need to adapt much as the only changes I made was towards the activities and environment that we lived in, such as we do not engage in activities where we are exposed to direct sunlight. We still go for backpacking but we avoid under being the sun for a long time. I never had any unfavourable experience.

What are your thoughts when Zara is pregnant?

J: I am very happy but I am concerned with her SLE conditions as pregnant while having SLE is risky. I need to pay more attention to Zara in all aspects of her daily life, and heed the advice from the doctors in the hospital and health clinics.

Any advice/thoughts that you would like to offer to husbands/significant others of people who has SLE? Or with SLE and want to have kids?

J: I don’t think I am the right person to advise, as for the past six months our journey was smooth. Zara only encountered mild fatigue and a week of morning sickness. We think it is normal among pregnant women. So, it is hard to answer your question since SLE symptoms are very subjective and different to each person. What I can say is just to stay calm; always think of positive things; and always understand your partner’s conditions. Sometimes it will be hard but keep fighting and face what may come together.

I am moved by how supportive Jep is to Zara, and the positive attitude that both of them took to overcome the challenges and risks that arisen because of SLE. With this I hope that SLE patients do not get overly worried about conception and whether or not SLE will be triggered with a flare because of pregnancy. No doubt that we SLE patients have to really take care of ourselves and not stress ourselves out during pregnancy, hope is not all lost.

May Zara and Jep’s pregnancy journey be smooth; both of them take care of themselves well; and their baby delivered healthily in a few months’ time!

Burnt out because of Covid-19? Don’t worry, just keep moving.

“You are lucky that you still have a job!”

“A recession is looming! Don’t you ever think of resigning. You’ll never find another job!”

I wished I could feel nothing but gratefulness that I still have a job, but lately it has became increasingly hard to feel so.

Covid-19 has created history for being the latest addition on the list of pandemics that threatened the lives and livelihood of the human race every few decades. Whilst the death toll could not compare with the 1918 Influenza, the impact was nonetheless unprecedented and devastating.

The disease has triggered a ripple effect on the world economy, and many industries are hurting badly, especially aviation, tourism, live performances, fitness, eateries, beauty parlours, construction etc. The chain does not stop there. When the employees from these industries have pay cut or outright job losses, they could not pay their rentals and daily necessities, and that is how recession rears its ugly head. Unemployment rate has surged during this Covid-19 worldwide, and having a job is definitely perceived to be fortunate. It is no wonder that people who still have jobs are working harder to prove that they are still an asset to their employers.

So yes, I still have a job, and I am also burnt out.

Workers who still have jobs are experiencing tremendous stress. The economic ecosystem has already lost its balance, with a few players at the verge of dropping out of the system, and yet the existing surviving industries are still expected to perform with little interference. I work in the finance industry, and it appears that the stock exchange worldwide believes that no disruption could befall the stock market. The shareholders need their numbers and their predictions. The timelines must be met. There are many people involved in the preparation of those numbers, and with disruption in supply chain and customers’ payment, getting things moving has been harder than before.

My colleagues told me that they are experiencing precisely the same. Now we are working 10 hours workdays, and many are working through weekends. With the calls and various decisions-making cropping up (for eg. due to government announcement), work has not been efficient as pre-Covid19. The only known way to catch-up is to work more hours. Working more hours leads to mental and physical fatigue, and that exacerbated the inefficiencies. That is how the vicious cycle kept perpetuating itself.

I think we have to stop feeling guilty about not working the extra hours, if we could not. Here are some of the things that I felt that could help if you are now in that rut:

1. List down all of the things that you have to do

Having a full list helps you plan and envision the end results. I have 60 things on my list. I am not discouraged, in fact I felt that now I know “this is it”, I have clarity on whether or not I could accomplish what was on the list, and whether or not I need to speak to someone for help.

2. Achieve bite size goals everyday

Nothing is too small as an achievement. Pace yourself. Remember to strikeout items in the full list and give yourself acknowledgement at the end of each day. Remember that working home is not a walk in the park these days, simply because many other things are affecting the business that you are working in, and you are shouldering part of those burden as well.

3. Seek help and delegate

Reach out to your boss and staff to understand how is everyone coping. Chances are even your boss is feeling the heat. Discuss if you should prioritise any tasks, or if any timelines could be deferred.

4. Give yourself a break

Do things other than work. Do not lose your identity in the midst of all this chaos. If you could not finish the work anyway, what is the difference if you spent a 15 minutes doing that HIIT training or watching a video on hiking? If you continue working knowing at the back of your mind that you are forgoing the things you love, you will dread work even more.

5. Reconsider your options

At the end of the day, if your boss did not understand the difficulties that you are facing, maybe it is time to rethink if this is the place for you.

Chin up, folks.

The clock for global changes has been wound faster and like it or not we will have to learn to adapt. Maybe this means we have to pick up another skill, do a different type of work, or consider this as a crossroad, ie whether we have made the right life choices so far.  Give yourself a break. No-one could starve themselves to death in this 21st century. Hang in there. You just got to keep going. As long as you are doing something and achieving something everyday, you will get there soon.