Living with an “Enemy” in My Body
After being diagnosed with an autoimmune disease, she has learned to slow down, accept her body, and appreciate little things in life more.
In 2010 I was diagnosed with an autoimmune disease. It’s called Hyperthyroid and Sjogren Syndrome all in one package.
The thyroid is a butterfly shaped gland at the front of your lower neck and it plays an important role for your body’s metabolism. My thyroid gland produces too much of the hormone thyroxine, which causes weight loss, rapid heartbeat, sweating, weakness, extreme fatigue, insomnia and nervousness. Sjogren Syndrome causes dry eyes, mouth, skin and vagina, as well as painful and stiff joints. It also causes brittle nail and split ends, too.
Prior to the final diagnosis, I consulted with different specialists about the different symptoms. For over a year, I saw ophthalmologists, dermatologists, endocrinologists, immunologists, before, finally, a young ophthalmologist came to a conclusion. Severe dry eyes, hand tremors, stabbing chest pain, rapid weight lost and frequent sudden high fever indicated it was an autoimmune condition.
There’s no cure for autoimmune diseases, which means I will have to live with it for the rest of my life. When my hormone is at normal level, it’s called the “remission stage”, as the condition can flare up without notice. We have to take medication every day.
I joined a regular yoga class in 2009, and began to adopt a clean-eating diet as well as listen carefully to the signs that my body sent. Although I naturally love being busy, I learned to slow down whenever my body said so.
For a while, the efforts paid off. I started cutting down the dosage of my medication in 2013. But in the middle of 2015, the symptoms reemerged. I had severe headaches, my joints hurt, my skin itched, and there were red bumps all over my body. Hence began countless visit to the doctor. I was also hospitalized for a week due to inflammatory bowel that caused nausea and severe vomiting. Since then I’ve been back on medication, though in lower dosage.
For people living with autoimmune disease, some days are rainbow, some days nothing but gloom. Even in our best condition, we tend to be more fragile than we were before the diagnosis. There are always symptoms to manage, blood tests to take, meals to restrict (even though I am sometimes a bad patient, as I enjoy the occasional sugary gluten food to satisfy my palate).
It’s not easy. As an active woman who enjoys having many things to do, I have to accept that fact that being too active can cause extreme tiredness afterward. Some days we can function properly, but some days we just can’t.
Sometimes I’m stressed out because I’m not able to do the things that I used to do. I have to postpone developing “Nyai”, my hobby-turned-small business after being hospitalized, because I know I have to selectively choose how to spend my energy. I prefer to have quality times with my daughter instead of spending weekends and off days on my business, because I still have obligation as a corporate slave too. And I hate myself for that, even though I know it’s the best way to prevent my condition from getting worse.
Despite my bubbly personality or my penchant to tell cheesy jokes to make people laugh, I harbor fears and hate. I hate being dependent on others to manage my own energy. I hate cancelling plans on my friends. I hate telling my office that I have to (again) take some days off when the symptoms flare up. Most importantly, I hate seeing a doctor regularly to ensure my hormone is under control.
Brain fog scares me. Especially when my friends make jokes about my forgetfulness for little things. There are days when unrolling my mat can save my day, but my body says otherwise, as I cannot even walk steadily because of dizziness.
When you know that the road ahead of being healthy is unpredictable, you know how blessed you are on your days when you can function.
I know some people are skeptical because I don’t look like a sick person. But, trust me, some days when we cannot function, it is not because we are lazy. There are days when we are in pain, exhausted and sometimes depressed, because we cannot make others understand what we go through on daily basis. I knew from a good friend of mine, that some people think I was merely affecting a certain self image by eating green and leafy vegetables everyday, or bringing my own meal box. They don’t know that I do those things to keep myself healthy.
I also know that certain people mock me behind my back, as I often write on social media how grateful I am for little things in life. To them it looks as if I am merely bragging. The truth is I am grateful as I still have a chance to do things that I love with so much passion and energy. When you know that the road ahead of being healthy is unpredictable, you know how blessed you are on your days when you can function.
Sometimes I feel like living a double life. When I’m at work, I am the kind of person who goes all the way. I love going on a series of working trips and I can meet all the deadlines. Finishing feasibility studies for every city, where our company will build digital television is not an issue. As the Chairman of Division Program for Indonesia Digital Television Broadcasting Association, I have to attend a series of meetings with stakeholders.
I do yoga three times a week and sometimes more. I swim on a weekly basis, too. I love cooking and doing house chores on weekends. I also take my baby girl to her piano lessons and attend parents’ meetings and the likes. In short, I love what I do.
I know sometimes I push myself too hard, trying to prove to the world that my illness cannot beat me. I don’t want people to feel sorry. But I occasionally forget to accept who I am, so I forget to take care of myself and to listen to my body.
People don’t often talk about autoimmune disorders; for many it is a silent attacker. People show no symptoms for a long time, then all of a sudden a flare up occurs, which can leave friends and family baffled.
In reality, I am sometimes a mess. I have to find a quiet place to cry because I am tired of trying to control the illness. It’s so much easier to pretend everything is okay, because I believe my coworkers or my friends don’t want to hear my truth day after day without feeling sorry. Why share the glooms anyway? No one likes to hear people complaining.
Despite the downside, however, I will continue what I am doing: do things that I love, work on my emotional and spiritual health, move my body as often as I can with yoga, eat clean (with some cheating days, perhaps), and practice self love in every thought because I deserve it.
The silver lining is autoimmune has given me the greatest gift in life. It has taught me to find balance, despite the mess, despite those lowest days. Sure we need understanding and support, but I learn the hardest way that the only person who can be my biggest supporter is my self.
I shall continue to learn to get up and clean my mess, letting go of the chattering monkey inside my head, and pressing forward. And I learn not to care about what others think of me, however they want to judge me.
Autoimmune has given me priceless lessons to live life to the fullest as well as appreciate little things in life. The sound of birds chirping in the morning, a walk in the park, a hug from my daughter, or breakfast made by dear husband. And with these little things, I learn to make peace with myself.
Inka Prawirasasra is a self-confessed ambivert who lives a double life due to her extroverted-introverted nature and her autoimmune disorder. Often misunderstood, she struggles to balance herself and her life despite her illness.
