Loving someone with lupus comes with a host of responsibilities, and not getting the desired outcome and test reports after months and even years of caregiving and supporting them can demotivate any person and make them lose whatever little hope they were holding on to.
In order to love and be there for someone with lupus, it is important to first understand the nature of the illness. Lupus is an auto-immune disease in which a person’s immune system attacks its own healthy tissues, leading to severe problems such as organ failure and, in extreme cases, even death.
Lupus And Relationships
Lupus information for spouses with the disease is essential to know in order to lend support to your loved one and be there for them when they need it the most. They probably would not want to be coddled and babied, so, the way you lend support also makes a difference in how they receive the help.
It’s important to educate yourself about the disease, make a plan, and understand that loving someone with lupus is not only a physical battle but also a mental one. And, for that very reason, you will be required to make changes to your lifestyle and adapt to new situations much faster.
Related Reading: How She Coped With Her Spouse’s Mental Illness
A near death experience
The shell fell directly into the bunker.
Six of us were taking cover from heavy shelling at our location in the remote post located at icy heights in a faraway glacier. When I recovered from the impact, I was surprised to find myself alive and unhurt. At that moment, my brain was devoid of all thoughts but one — I had not even told my girlfriend that I loved her!
Amidst the chaos of the days that followed, I found time to write to her on a torn sheet of paper. No preamble, no flowery language, no obvious signs of flirting — I even forgot to mention that I thought she was the most beautiful girl I had ever met. I simply wrote that life was too short to not admit that I loved her and wanted her to be my wife.
We moved around a lot
I was twenty-one, and she was still in college. I was fresh out of the military academy and on my first posting. Both our fathers were army officers serving in the same station and that is how we had met several years ago. She was very bright academically and her parents had high hopes for her career.
That was Moira. The next six years passed in a dizzy blur of love and bliss. We moved often due to my postings. We lived in mud houses and tents. It was in those little houses that we created the most amazing memories. Wives had little to do in those remote areas, so Moira taught herself to cook the most delectable dishes and even mastered desserts.
She also gifted me my most precious gift, our daughter Shay. When she turned twenty-six, Moira noticed rashes on her skin. Fearing an infection, we visited a dermatologist. His diagnosis shattered our perfect life.
Related Reading: My body was broken but my girlfriend kept my heart whole
She was diagnosed with Lupus
Moira had Lupus, an autoimmune disorder that affects all the organs of the body, gradually killing off each in random order. Worse still was the news that Lupus was incurable and that Moira had about two years left to live. My friend has lupus, and after watching him suffer in pain every day, I was dreading watching my wife go through that too.
I made it my mission to learn everything that I could on Lupus. With the help of the Internet and books, I delved deep into medical research being carried out at any medical facility in the world. All concurred that no cure was available. There were several suggestions on how to prolong the patient’s time, though, and we started working towards that.
By then, her disease had spread to her lungs and heart. She and Shay were my reasons to not give up on love, and I knew I would be there to hold her hand through every step of the way.
We decided to make every moment special
The next phase of our life was acceptance. Once we stopped being in denial over the situation, we decided that we were not going to allow it to destroy the joy of spending our remaining days together. We started living life like every moment was our last.
No desire was to be left unfulfilled; no dream was found hard to be followed. We dined at the best restaurants, saw every movie that rolled out, every weekend involved a picnic to the countryside. We squeezed out the maximum that every day had to offer.
We bought a second-hand SUV and scoured every place worth visiting within two hundred miles. A person with lupus is often bogged down with pain and despair, but Moira wanted her family to remember her as someone who lived a happy, free life, and so we continued to travel.
Related Reading: Testing times bring out the best in relationships
The more her condition deteriorated, the more intensely we lived
Our love and devotion for each other grew to obsessive levels. We discussed Moira’s illness openly and dealt with her frequent hospital visits in a matter-of-fact way. Our daughter grew up in this environment. Moira kept us fully occupied with her plans to live more, do more, and see more every day.
She pushed me to do my best. When I was offered a prestigious UN assignment in Africa, she urged me to take it up, as it would do wonders for my career while giving me invaluable international exposure. She lived alone with Shay during that time. On my return, I was promoted to the rank of colonel and deployed to command my unit halfway across the country.
And soon, she left us
After a year of separation, living together again became even more special. We bought a new car. We made new friends. We attended every party even though it was becoming increasingly difficult for Moira to climb stairs, live without air-conditioning, and be out in the sun. But, for a person with lupus, she was more enthusiastic than any of us.
Christmas was approaching. Our friends dropped in to invite us to a Christmas party the next Saturday. True to form, Moira offered to bring the dessert. She lay in bed that day, scarcely lifting her head, but her spirit was bright as ever. Fussing about what if somebody saw her in her pajamas but still planning desserts to make, she remained alive and aware of everything.
The Christmas party never happened. Moira passed away the next day. She was thirty-eight years and eight days old. Although her passing wasn’t exactly sudden, we weren’t prepared for the immense grief it brought us. Soon after, I decided I wanted to become a stay-at-home-dad and not miss any milestone in Shay’s life since she was the only family I had left.
She loved me more than any woman could love a man. Her friend told me, after she died, that Moira had once said, ‘My skin is turning so bad, I have warts and marks all over me, but Ron still makes me feel like the most beautiful woman in this world. I want to live a little bit longer only so that I may love him some more.’
Loving someone with lupus is the most difficult thing I have ever done. The times are always testing and there is the constant niggling fear of death at the back of your mind. But true love conquers all. Life is too short to deprive yourself or anyone else of love, so make sure you tell your friends and family just how much you love them today.
Lupus can bring about many changes to one’s mental health, resulting in severe mood swings and anger issues.
Life is too short to not be with the one you love. Lupus or no, make every moment with your partner feel special.
Some research has been done to prove that extreme stress can lead to auto-immune diseases such as lupus and arthritis.