I wish to share my lupus story during this time of grieving for the recent loss of my beloved uncle, Mr. Clair Goodwin. He passed on May 16, 2017.
I wrote him a letter while he was in hospital, detailing my journey with lupus that he was not aware of. It was written to encourage him while he struggled with his health ordeals and give him insights into what it is like living with a chronic health condition.
Dear Uncle Clair,
I have always found writing to be therapeutic. With pen in hand, I allow myself to go deep into my emotions. A form of freedom of expression.
As you now find yourself on your own health journey, I wish to share with you my lupus story. For we are more similar in our health struggles than you may know. Both of us on warfarin and thyroid pills, bruise easily, permanent swelling in the lower legs so we have to wear support stockings. And most crucially, we must learn to live with chronic, life-long health conditions. What a pair we are, ha! This is the first time I’ve ever written about my lupus to anyone. So I begin to tell my truth.….
At 33, my life changed forever. After two years of mysterious illnesses and blood clots in my legs over this period, I was officially diagnosed with lupus in 2008. Lupus is an autoimmune disease where the body turns on itself and attacks healthy areas. It can affect the skin – called discoid lupus- in which large, red welts appear on the body. It can also affect any vital organ. It primarily strikes women between childhood to age 50 and there is no cure. Now, extensive research has come a long way so that someone with lupus can, generally, live a normal lifespan.
In my case, which is common, I had inflammation of my kidneys. This was discovered through a biopsy. I remember my anxiety waiting for the test result…..the scary thoughts that ran through my mind: If it’s severe, would I need life-long dialysis or even a transplant? My symptoms prior to diagnosis were sun sensitivity, poor circulation, blood in my urine, achy body, and very fatigued all the time. I went from being a person with excellent health all her life to someone on 8 medicines and endless doctor appointments and blood tests. I’ve lost count how many needles have been poked into me and how much blood has been sucked out of my body. Essentially, I became another number in the health care system.
Physically, the worst pain I experienced was two issues. I developed intense leg muscle cramps. It felt like having a Charlie horse that never ends; a searing hot knife stabbing through my calves. I could find no relief and had to wait it out, as I lay on the couch crying in pain. Sometimes it was so bad, I thought maybe I wouldn’t be able to walk properly again. Often, it would wake me in the middle of the night, as I twisted in agony. The other incident was suddenly getting (what I thought) was severe migraines. My head would explode in excruciating throbbing in one area. I would sit wailing, holding my head in my hands, desperate to make the pain go away.
When it became unbearable, I went to emergency where I was given a cat scan. I had a subdural hematoma, which is bleeding under the skull but outside the brain. I was admitted overnight and I found myself, like you, in a thin hospital gown with nurses constantly poking at me at all hours. In the morning I awoke to a doctor and his team of 8 medical students all staring at me in their white coats and holding clipboards. I felt like an alien species that they gawked at. Your dignity gets thrown out the window.
Emotionally, I felt disbelief and the unfairness of having lupus. The day I was diagnosed, I went home, filled the bath tub, and lay in the hot water for a long time. I didn’t cry, but I was lost in my own sadness. Over time, it became a loss of many things: my physicality and strength diminished, I could no longer be out in the sun without burning, I could no longer run, I couldn’t walk long distances with always having to sit down. I wasn’t allowed to play contact sports due to bruising easily or anything that could further injure my legs. Most evidently, my energy level was permanently lowered. I can’t remember what it feels like anymore to have 100% energy.
It caused me to isolate myself. I withdrew from friends. I lacked confidence to do normal activities. I was embarrassed if I couldn’t keep up with my friends. I was ashamed of how physically weak I could be, even with simple chores. This disease struck me in my child-bearing years and it was too risky to have children at the time. Indeed, I felt so different from other people who were “healthy”, while I had entered the realm of “the sick ones”. A friend told me that once you wear the crown of health problems, you are forever changed.
Thankfully, I have been in remission for the last 7 years, meaning I no longer have inflammation and my symptoms are manageable with medicines. But I have had to undertake lifestyle changes, whereby I should create a stress-free, low-key existence. I laugh sometimes because simply living is stressful!! Life is not for the weak; there are constant struggles. I have come to a place of acceptance and choose to remain positive instead of cynical or self-pitying. If I feel down, I remind myself that there are millions who suffer much greater afflictions than me.
Those of us who live with chronic health problems are faced with unsettling questions: Who am I now? What are my physical and emotional limitations? Where do I find my purpose anymore if I can’t work or enjoy my regular activities? How do I obtain a good quality of life with these new changes? The answers only come, in time, with each individual. The road is long and the struggles are plenty…..Do we break like a dry twig in a storm or bend like the willow reeds in the wind? This I know: that which doesn’t bend shall break.
Know that I am here for you during your recovery and beyond. You are not alone. When I am not physically present, I am always supporting you through encouraging and loving thoughts. You are my teacher, a role model, and my friend.
So take my hand and let us sway in the winds of life. We will not be broken!
I love you forever & always.
Your niece, Sue-San xoxo