How My Invisible Illness Prepared Me for Uncertainty


"The uncertainty of the current situation can bring with it anxiety, and stressing about things big and small. Realizing that I'm no stranger to change, helps a little with the isolation."


"Grounded" can sound more like just another buzzword than a reality, for most of us right now at this time. With all the cases of COVID-19 climbing steadily, times have never felt more shaky in terms of the health of our planet and those who live on it, at least in the years I've been on this earth. In the same token, this is not the first time I, and many other illness warriors, have dealt with an invisible threat.

As a "spoonie" I'm accustomed to a pretty regular state of not knowing what my tomorrow will look like. I've been seeing people voice this in a variety of ways on social media. Some approach it with a "well, now the rest of the world knows how it feels" vibe, while others reject that attitude, thinking that it brings with it a hostile temper to an already hostile situation.

No matter the initial reaction myself nor you have had to this outbreak, and to the changes it has brought to our lives, we do still in fact have control over our response and can choose to change it at any time. Though it may sound generic in some ways, it couldn't be truer in a time like this. Now is a time where not only seasons are changing, but our daily routine and the way we refer to others around us is changing. It's up to me (and all of us) if we want to change that reaction for an even better one. I've seen so many mixed responses in many people. Others see and listen intently to others' perspectives, about how every life is valuable, while some just shut each other's concerns down-- despite experts saying "now is the time to put others' welfare beyond our own". For the sake of argument and cortisol, this post is not going to do a deep dive into politics, economic impact, or social impact this is having. I'm sure we're all getting our fair share of that daily. I want to talk about how I am, and have been on a long journey, to shift my perspective about uncertainty.

The topic I want to dive into is the things I can control, as I said before, is how I am able to pivot my own reactions during this time, toward others and myself. Listening not to respond, but to understand. Even when people have reactions from a place of fear. Not so much trying to understand the flawed point of view or what sounds like possibly a selfish perspective. But trying to connect the emotion of fear, behind the rhetoric they're using. I found myself getting so upset and even angry at people who said things about it, "only affecting the elderly or those already immunocompromised". I do agree with many of you, in that this is a very selfish way of looking at things. Being someone who is compromised right now, and not even in a way I fully understand yet, it is disheartening to know that some people are more concerned with their social status, than protecting others' lives from an invisible threat. And when speaking about uncertainty in my life, I've been told by my doctor that she believes that I do most likely have an autoimmune condition, they are just not sure what yet. And then another doctor says, "oh it's definitely not an autoimmune condition, because your blood doesn't show this and this...". So just being in a state of confusion itself is extremely isolating and disheartening. This contradicting information I've gotten time and time again from doctors is similar to this misinformation people are receiving right now through media. One person says this, another contradicts it. This not knowing for me personally, was taking a toll on my quality of life before all of this chaos, but now it has become frightening in other ways.

Being present with the unknown is no foreign concept to me as someone who has received very little answers from so many doctors and healthcare professionals. I do understand the urge to want to lash out. To say, "well, now the rest of society sees what it is like to have an invisible illness/threat that is out of their control, and that no one will believe them about". The fact that it is so incredibly difficult for those with invisible illnesses to get aid or just support and resources from the public has been brought to light by this situation.

Given that what I face daily a lot of the time is an invisible battle, I try to allocate my energy, instead of to resentment, to instead knowing my audience. This is a concept I have referred to so frequently with chronic illness. When we know who it is that we can talk to about our struggles and be met with empathy, instead of pity, or patronizing, we create a barrier around our psyche and mental wellbeing. The last thing you need in a moment of personal crisis is condescending rhetoric. It is important for me personally to manage my priorities in terms of who will and won't (even try) get the privilege to know my whole story. Especially with the stigma out there that surrounds fibromyalgia, it is especially important to keep a level of privacy.

As for self care, it doesn't just include taking baths or yoga poses, it also includes boundaries that can protect us from those who aren't going to have the space to hold for our difficulties. However, the proper way to implement boundaries are to let them co-exist with empathy. Boundaries are not meant to leave us feeling ostracized or that no one truly would understand, so why explain? Boundaries allow us to sit with others who may not (ever) understand, and allow us to be okay with them not knowing what it is like to be in our situation. Whatever situation that may be. For some it is chronic illness, for others it is mental illness. Our common humanity shows us that we are all fighting our own battles. Someone may not understand what it is like to have pain everyday, just as I may not understand what it is like to have special needs children (not that they are a comparison particularly, just in the personal struggles).

I have had to learn to be okay with not knowing what additional illness I may have. With symptoms such as chronic hives that have lasted 8+ months, red, swollen hot joints, that bruise and damage blood vessels. Among extreme pain in my stiff feet and fingers. An illness that so closely resembles RA, or an autoimmune illness. Even though it remains to be unseen why odd symptoms keep occurring for me, I've had to find comfort in my own time, to be able to withstand disappointment of a new normal I don't want. I'd like to say it is easy to keep this mindset and that if we apply it to this situation we'll feel better. You or I may not feel better. But learning to breathe through uncertainty has become my new normal.

I keep my head up knowing I am not alone. That has been the biggest contributor that comforts, a common struggle. I don't find comfort in knowing others are suffering, just knowing that my suffering is not exclusive. This is not to say that we do not need to process through emotions that come up. In fact, not processing them is toxic to our minds and bodies. As Brene Brown mentioned in her podcast, Unlocking Us, that the antidote to shame is empathy. We shouldn't feel shame about anger, doubt or uncertainty that we have right now, but shower each other and ourselves with empathy.

Stay safe out there. With your bodies and minds.

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