An electric shock sensation started in my toes, moved slowly all the way up my body, then back down until fizzling out in the middle of my back. What in the actual f*ck was that? I thought as I tried to keep my composure in my work meeting. The burning, tingling sensation in my legs started moments later. Stoically, I finished the meeting and returned to my desk without my colleague noticing the discomfort each step caused me.
Several weeks later, I was diagnosed with Multiple Sclerosis. My immune system mistakenly attacks the myelin in my central nervous system (CNS). The myelin damage (lesions) interfere with communication between the brain, nervous system, and body—causing varying symptoms.
MS is an inescapable, unpredictable, and incurable disease. The location and size of your CNS lesions determine your symptoms. We all want to know the answer to one question after being diagnosed with an incurable disease: what’s going to happen to me?
With MS, the only prognosis you’re given: a lifetime of uncertainty.
It’s Okay if Your Struggling to Cope with Uncertainty
Uncertainty, a prognosis given to a woman that has a plan for everything, a deep psychological need to control my future. My uncertainty tolerance wasn’t strong enough for this prognosis. Worry consumed my mind.
Will my legs ever feel the same again?
Will I lose my cognitive abilities?
Will employers discriminate against me?
Will I finish my doctorate?
Will I lose my ability to walk?
What will my family, friends, colleagues think of me?
Will my health be a burden on my husband?
I used unhealthy avoidance and control strategies to cope with my diagnosis. MS wouldn’t impact my life, a lie I often told myself. I threw myself in my work, added hobbies to fill every moment of the day, and bottled-up my emotions. Anxiety soon consumed me.
I viewed my anxiety and inability to accept my disease as critical emotional flaws. My response embarrassed me. People struggled with things far worse than MS, yet there I was with a racing heart and a doom’s day moving playing over and over in my mind. Why was I struggling with uncertainty?
Our desire to resolve uncertainty is typical and often helpful. When planning a camping trip, you bring extra water and a first aid kit just in case. You avoid the dark alley just in case. Every day, our actions effectively manage our uncertainty. It triggers your brain’s stress response process to give you the energy to find ways, or information, to resolve the threat. But sometimes the threat cannot be resolved, at least not quickly. You may not have the tools, or information, required to fix your threat. Or, it is uncontrollable and terrifying, such as having cancer.
A prolonged state of uncertainty may cause anxiety and places you at higher risk of depression, cogitative impairment, heart attack, and stroke. I’m not broken. You’re not broken. We are just human. We need the correct tools to manage our reactions to uncertainty.
Tips for Increasing Your Uncertainty Tolerance
Many people can accept and manage uncertainty, even when facing significant threats. They aren’t better than you. They simply reach into their stress and anxiety management toolkit to cope. I’ve spent years perfecting my tools to help increase my uncertainty tolerance.
Recognize your anxiety triggers
It’s difficult to manage anxiety is you’re unsure what is causing it. Consider keeping a journal and writing down every time you feel anxious, what caused your concern, and if you did anything that made your anxiety better or worse. Over time, you’ll see patterns and can begin addressing your triggers and using the management strategies you find most helpful.
Reading MS stories on the Reddit subreddit r/MultipleSclerosis is one of my anxiety triggers. Some of the Reddit stories are helpful and gave me hope. Others fuel my worry. Stories about cognitive decline destroy me (I’d happily trade my legs for my brain if the MS devils gave me a choice). Once I recognized the subreddit caused me more harm than good, I banned myself from reading it.
It was my neurologist who pointed out my other trigger. I explained how my anxiety increased during the week of my monthly infusion. I wondered if it was medication related. She pointed out that my infusion reminds me that I’m sick, that I have MS. The inability to hide from my disease resulted in anxiety. I use my other tools during this week to manage this trigger.
Practice mindfulness when you’re worrying
Uncertainty causes us to worry about the future and the “what ifs.” A little bit of worry is okay and constructive. But if you find your thoughts causing anxiety, or you are unable to distract yourself from worrying, consider practicing mindfulness. New research suggests that practicing mindfulness is useful for reducing repetitive and intrusive negative thoughts that frequently occur in depression or anxiety. I use a meditation app anxiety-based practices to learn how to identify, be with, and let go of my fears.
Focus on controlling the controllable
My greatest joy is conversing with my husband. We spend most nights listening to music, deeply examining ourselves and the world. MS threatens my greatest joy. For example, I regularly forget words, but not like when it’s just on the tip of your tongue type of forget. (I remember those days). The word is erased from my memory. The definition and synonyms are still known to me, but the word is gone.
Whether MS steals my cognitive function is something I cannot control. Nor can I control whether it will steal my ability to walk, among other things. Spending energy trying to control the uncontrollable is not productive and will only result in stress and anxiety. When examining the uncertainty in your life, consider identifying the controllable and focus on creating plans to manage only those items.
Learn to Accept Uncertainty
One thing is sure. You will always have uncertainty in your life. Similar to the benefits of practicing mindfulness, learning how to accept uncertainty may help manage your anxiety. I avoided or push down negative thoughts. My philosophy was that pretended nothing was wrong, that eventually, everything would be fine (take it until you make it). A happy, controlled appearance cannot trick a scared, anxious subconscious. Eventually, I broke.
I find the R.O.L.Ling technique helpful. The process is to recognize your anxious thought, observe the impact of your thought, and then visualize letting it go. Instead of avoiding your negative thoughts, this practice teaches you to accept them and move forward.
Most importantly, finding a reliable support system is vital to coping with uncertainty. Because I tried to avoid my reality, I pushed people away, even my spouse. I didn’t tell my mom, who is a nurse, I had MS for nearly two years. No one knew the extent of my emotional struggle, which made me feel lonely and sad. My biggest regret is not being honest with myself and others, and not having the bravery to ask for help.
You do not have to navigate your emotional health alone. Find people to help you and accept their help when offered. You need it. We all need it.
A good time to be diagnosed with a life-changing disease doesn’t exist. My diagnosis came shortly after my 27th birthday. That year undoubtedly was not it. Working full-time and a year into my doctorate degree, I needed every ounce of energy and cognitive function available. Instead of taking time to cope with my new reality, I bottled up my emotions and avoided it. A strategy I now recognize as destructive.
If you are struggling with uncertainty, regardless of the cause, you are not alone. We cannot possibly know how to solve all problems that come our way. You cannot control uncertainty. It will always be present in your life. You can, however, arm yourself with tools to increase your uncertainty tolerance to live more harmoniously with this reality.
The tips shared in this article are based on personal experience. I am not a medical professional. If you are struggling with anxiety, depression, or coping with something in your life, I highly encourage you to seek professional help. The Anxiety and Depression Association of America has resources to has resources to find help and so will your health care team.
© 2020-2021 Alexys Carlton. All Rights Reserved.