3 Tools for Patients Coping With Medical Uncertainty

Radical Acceptance

When we’re facing scary things, it’s really easy to resort to avoidance and resentment. Like children who need comfort, we try to tell ourselves that everything is fine and that eventually the problem will just work itself out. 

Unfortunately, however, rather than comforting us, avoidance actually has the opposite effect. As we neglect working through difficult feelings, our anxieties are amplified and we end up in a vicious cycle of ignoring our ever expanding anxieties about our health. 

The trick to getting out of it is to accept our new limitations and pains, along with the possibility that they’re here to stay. With that, we can recognize new possibilities that would have been closed off in our minds before. For instance, there are ways that we can adapt to changes in our bodies, to accept and work with them, rather than against them. 

I’ll add this caveat. I’m not saying that there’s no chance your illness will go away or be cured—every circumstance is different. All I’m suggesting is that accepting and grieving that possibility can help you move forward and even find ways to thrive. 

Control What You Can

Being able to differentiate between what we can and can’t control can help us move through hard times by giving us back some of the power we think we’ve lost. In my weaker moments of dealing with encephalopathy, it feels like everything is out of my control: the progression of my illness, the training my doctors received, their very human biases, the cost of my treatment and whether insurance will cover it, etc.

But the truth is that there are always things within our control.

When my neurological symptoms went from bad to hellish, one of the first lifestyle adaptations I made was to start working from an ergonomic lap-desk in my bed. With a wedge pillow behind me and an electric heating pad wrapping my belly, I’m able to write for a few hours a day. By making one small change, I was able to keep working part-time.

By tapping into things that we can control, we can add more certainty back into our lives. Here are a few prompts to get you thinking:

• Set a small routine for yourself. This can be as simple as watching a comfort TV show every day or trying to be better about eating all three meals.
• Are there ways you can adapt your home for changes to your health?
• Prepare something in advance that you know causes you strain when you need it urgently. Some ideas include a hospital go-bag, a menstrual kit, or meal plan.

Learning about your health can also be an important way to take control of your life. Particularly in cases where you really are being gaslighted or dismissed by your doctors, taking your life back into your own hands may mean looking for a second or third opinion (it’s okay to fire doctors who aren’t helping you).

It’s also okay to take the reins on researching medical conditions yourself to get to the bottom of things. In some instances, you might find the right information to show your doctor for feedback. There have even been a few cases where I’ve correctly figured out what I had before my doctors did. However, if it’s causing you more anxiety to do this, it may be time to take a break.

Support

I understand as well as anyone how hard this one can be. When my neurological symptoms started to peak, I had just moved to a new state. Between the three-day drive and unpacking, my body was wrecked. I didn’t have the stamina to go out and make friends, and I by the time I was too sick to move, I didn’t want to talk to my old friends.

I missed them terribly. I just didn’t want to give them more bad news. I felt like I shouldn’t be allowed to have so many problems.

The thing is, getting support from other humans is crucial to coping with uncertainty, and it may save your life in more ways than one. Trusting relationships offer something we can feel certain about in the face of darkness and pain. 

Support will look different for every person and every time of life. A few examples of how it might look include:

• Venting about feelings related to the illness while they just listen.
• Asking for help with tasks you can no longer do.
• Asking for help advocating for yourself at doctor’s appointments.
• Asking for help making your home more accessible.
• Asking for support fundraising for medical bills.
• Doing an accessible activity or spending quality time together at home.
• Having a them take you out somewhere if you can’t leave the house on your own.
• Talking with a therapist.

For some people therapy can be a better option than talking to friends and family for a couple of reasons. Not everyone has close friends and family, and many live so far away from those they love that it’s hard to talk to them often.

You might also find that your friends just aren’t equipped with the right tools to support you. For instance, hearing people say “everything’s alright” when you really just need to be seen and understood isn’t helpful. Whatever you need, it’s important that you let your friends know what you need so that they can support you more effectively. If you don’t know what you need, it’s okay to let them know that too.

For pointers on finding a therapist, check out my post on the topic.

Before I go, I just want to say that whatever illness you’re going through, you’re not alone. My experience might not be the exact same as yours, but I know how hard it is to feel totally at a loss for now to cope with what life gives you. If I could, I’d give you a big hug and tell you, “you’ve got this.”