I tried to hide my illness when it started to develop when I was about 18. I wanted to be the cool, smart, high achieving androgynous best-selling author. That was the nutshell. And when illness constantly interfered, I got angry, embarrassed, a little unbalanced.
Only the closest of my friends, my boss and of course, my parents knew about the migraines, the chronic fatigue and fibromyalgia. My diagnosis came in phases, and I felt so deeply sad and embarrassed with each limitation that came.
Hyperprolactinemia, caused by pin head tumours on my pituitiary gland, came with migraines and lactation. As in, me, tiny boobs, no baby Juliet was dripping breast milk all over the place. If I got angry, had a laugh, talked to my crush, anything, it would trigger squirts of milk from my boobs. I had to wear those mama bras for a while.
Then came Cushing’s Disease triggered by corticosteroids to control autoimmune activity. Uncontrollable weight gain. The shape of my face changed. I developed a hump. At one time I was dripping cerebral spinal fluid from my nose due to intracranial pressure.
A huge turning point career-wise, came when I developed a series of opportunistic infections. A most severe chest infection closely followed by a kidney infection that turned to septicemia. I didn’t think I was going to make it out of this one. At the time, my kidneys were injured but not failing. The pain was incredible. The loneliness even worse.
When I started to recover, I called my boss to explain what was going and that I might not be able to continue working. Instead of letting me go, she sent me a new laptop and cash for internet bundles and instructed me to handle my usual tasks from home but only what I could. Of course, I did way more than was required. And I loved it! Seven whole years of writing, editing and department support, working incredibly hard from the safety of my home, sometimes even from my bed or hospital bed.
I still did not have a diagnosis at this time. One doctor said this, the other said liver damage. I had/still have type 2 right ventricular dysfunction. Some doctor called it heart failure. We were scared. So off to India we went. Best decision.
The doctors in India explained that I have Undifferentiated Connective Tissue Disease which meant that I had some, but not all features of different autoimmune diseases. I have the basic symptoms that cut across all autoimmune cases; headaches, fatigue, sensitivity to ultra violet rays, general low grade fever and opportunistic infections.
I also have GERD and thickening skin from Scleroderma, Extremely painful muscle inflammation and weakness from Myositis, dry and inflamed eyes from Sjorgens, organ & skin inflammation from Lupus, porous bones from corticosteroids, Raynauds Syndrome which gets incredibly painful and and can even cause wounds on toes and fingers (digital vasculitis) when there is severe cold.
I also live with mental health challenges from having to deal with this debilitating illness. Sometimes the mental health issues are brought on as side effects of medications I take. Right this moment, I’m suffering severe anxiety attacks which include hallucinations caused by one of the drugs that I have to take to save another part of my body.
I am now managed by several doctors here in Nairobi which is a whole adventure in itself that I must write about sometime.
I still have vestiges of shame, sadness and often frustration because this is not how I thought my life would be at this point. So I am working really hard to accept myself, adjust my goals and live life joyfully.
One day, a beloved friend asked me: don’t you think sharing what you go through can help someone who is suffering too by helping them see they are not alone, and / or helping their people understand them better? I thought about it quite hard, even talked to a few Lupus and Autoimmune bloggers I knew from the the US and UK.
The advice was good. I had to have it clear what I wanted, how the media I used would help me reach my goals, but most importantly, I had to remember that I was still living with chronic illness so it was important to rest, sometimes rest even more when a flare was coming on.
A large part of the commitment I made to raising Lupus and Autoimmune Awareness was driven by a desire to demystify Lupus and autoimmune disease from a layman’s point of view in the hope that increased visibility and awareness might help with public health policies, patient care, and patient agency and so on while we still live in this system of things.
In the meantime, we do what we can, what we want to cope, survive and be our best while living with these illnesses.
And as Barbara Wanjala has declared on her Facebook Wall let one’s worth not be diminished by their diagnosis. If you choose to live your illness privately, it’s a personal choice. Or you can live it loudly, just for yourself or to shine a guiding light for those that follow. You have absolutely no obligation to perform your illness for anyone.
May you have love, beauty, kindness, grace, peace, and all the warm hugs from those you love and who love you. Hugs after corona, of course.
I chatter a lot more about Lupus, my dog Guillermo and cat Mr.Finnegan on Facebook or Twitter.