6 Important Discoveries I've Made During My First Year With Autoimmune Disease

I consider April 28, 2016 to be my first “anniversary” of my new life.

In fact my health issues started way before this date, but on exactly this day last year, I was walking into the ER for a terrible pain in my throat area I had been feeling for a couple of weeks, which afterwards I was told was an inflammation on my thyroid.

After this day, my life became a roller coaster of symptoms that impaired somewhat my regular life, medical visits and tons of medication. Finally around six months later I got my final (or maybe initial) diagnosis of Sjögren’s syndrome.

It’s there for the rest of my “new” life. The rebirth process has been, and still is, hard. Way too hard. It’s been a year of life-changing and painful learnings, but not less important and positive ones as well.

During this first year, amidst joy and sadness, I’ve been through all sort of situations that are bit by bit tailoring a new mindset in myself. Below are some of the new discoveries and lessons I have acquired, and I believe there might be many others to come in future years.

1. You have to live to the present — and it can be tough.

We are raised in a society that is always looking towards planning the future. You are a toddler, and you are asked about your future school. You enter elementary school, and soon you are asked about high school, and so on.

I’ve never been a super organized planner of my future; I used to let myself go with the tide to a certain point, but had at least an idea of my future intentions. But I can’t live like that anymore.

It’s not like being condemned to be idle. What happens is that unpredictability becomes your “rule number one” and you cannot make any predictions about the evolution of your illness, when a flair will come or what the triggers are for a flair. You can feel better in the morning, and all of a sudden be extremely sick in the evening.

The only way is to live the moment. But the hard part is to learn to live in the now when you have been “programmed” to live the in the now and then.

2. You observe more, consider more, and then act.

For a long period after I got sick I had heavy impairments on my mobility, due to join inflammation, pain and extreme fatigue. Temporarily I had to make use of a walking stick to be able to give a few steps per day. Consequently, I was moving extremely slowly.

Nevertheless, I realized I could observe more, analyze more and appreciate more, since it took me more time to move from a site to another. I used to be already an observer type, but I could then see all the things I was use to see more thoroughly, observe people longer, analyze more their reaction and activities. In a sense the whole world became slower as long as I got slower.

Firstly it was very annoying and frustrating, but then I realized it was beneficial. I was able to see the world in a way that I didn’t before, and it was positive.

3. Yes, suffering can lead to enlightenment.

Suffering is overwhelming, either physical or mental suffering. It drains energy, joy and your activities. Your regular thoughts may be blocked, your ideas become cloudy. You become a puppet and your pain is the puppeteer.

And then, one moment I noticed that by chasing away bad thoughts, either regarding my disease or anything else, I was able to get rid of an extra burden on top of the one I was already carrying. That sentence “always look at the bright side of life” then started making more sense.

4. In general, medicine and doctors are way behind your real needs.

I like my doctor. My father is a doctor as well and he is a good one. But I’ve always discussed with my father that what I saw as a flaw in medicine is that it sees our body as pragmatic, perfect machines. Indeed, I believe the human body is a perfect machine, but above all, it’s an organic body, and as all bodies of organic nature, it runs on top of chaos and unpredictability; therefore, it is likely opened to exceptions.

Apart from medication and treatment for those diseases, which can be rather behind current research, doctors’ practices are based on a set of known symptoms and tests described to each disease. However, the full scope of those diseases are not always completely known and understood. Even some tests are known not to be 100 percent accurate. Consequently, if you have any symptom that doesn’t fit on those models described on their literature, it most likely will be seen as “unimportant.”

On top of that, even if you present any symptom that brings some discomfort, but it’s not life-threatening or disabling, you may hear “you shouldn’t worry about that.”

For a reason I can’t fully understand yet, doctors in general seem to be trained to play the devil’s advocate, as if their job was to prove the patient is wrong, and making you sound weird or not reliable when you insist on what you have or feel.

5. Multitasking is killing us softly. 

One of the pillars of businesses and life in general is multitasking skills. I myself used to be among these people, and I did it pretty well. I worked on multiple projects at the same time, dealing with multiple responsibilities. I did like it.

However, now it’s hard for me to have multiple things to deal with at same time. It drains energy in a way that was difficult to measure before. I still can multitask, but in a much smaller scope.

By not multitasking on a regular basis, I realized how much stress it carries along. When we are in the middle of the battle it goes unnoticed, but looking from distance, I can see how it takes away your focus on yourself, your needs and your peace of mind. It makes you always want to be in “on” mode, and we are not meant to be “on” all the time.

6. You may feel lonely, even if you are not alone.

The cliché “only parents can understand what unconditional love is” in a sense works for autoimmune disease patients. It’s a storm of pain, suffering, fear and despair, besides the physical symptoms, that only people with an illness can fully understand.

And for this reason it isolates.

I know how it was before, and I know how it is now. I would never have been able to relate if I wasn’t living this now. The fatigue people get from working too hard or depriving from sleep is overwhelming, not less important, but it’s not the same.

Even when you decide to be more positive and think “there’s worse in the world” or even when people say that to you, it brings comfort only for a fraction of a second, because it doesn’t make the real pain vanish away.

Since these diseases are often also called invisible illnesses, as you don’t generally have visible symptoms, people around may think you are overreacting. Even I have wondered if I was just overreacting at times. Consequently, one day you may decide to not talk about that anymore and put on a fake mask of well-being. It makes life “easier” as the world must keep turning.

***

Like a toddler, I’m growing and learning as the days pass. I’ve always been a positive person — “always look at the bright side of life” type — and I don’t want this approach to die.

I decided also not to wear an “ashamed cloak” and pretend not to be what I am now, afraid of other people’s reactions. Also, I don’t want to be defined by my disease, but I cannot deny to myself it’s there. I just want to be my new self, with all the limitations and pain that I might have — which I’d rather not have at all! I just want to run my new life as better as I can, keep on making jokes of myself and the constraints I have and have my sad moments. Even the bravest “warrior” needs to recharge.

I just want to live an ordinary life and be my own advocate.