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When Your 'Chronic Illness Fears' Become Your Reality

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Those with complex chronic illness know that after being tossed around the medical system, we sometimes can end up traumatized. Appointments become scary things. We worry about the outcome. We worry about whether our doctor will be able to help or not. We worry our doctor will give up on us.

And sometimes, our fears turn into reality. Today, I was refused a treatment I’ve been getting that allowed me to walk normally again. Horrified? Devastated? Shocked? There is no perfect word to describe my reaction to this event in my life. I had been given a part of my life back with this treatment, and it was now being taken away.

Unfortunately, with more people experiencing the downfalls of our medical system and care, appointments gone wrong is a common event. Life with a rare, chronic illness really is a rollercoaster, from being shuffled around to different specialists, offered different medications and dealing with awful side effects, to progression of disease.

I tend to be a very emotional person. When something goes so wrong, I get extremely upset. So although I can’t follow through all the time, I’ve found some ways to cope with bad news or a bad appointment.

1. Make a plan to move forward. Starting to think of what actions I can take next to remedy whatever has gone wrong is the biggest and most effective coping mechanism for me. Do I need to see a different doctor? Do I need to take a different approach? What is the next step? Having that plan and thinking of possible next steps has a calming effect on me.

2. Lean on your support system. Whether that be at home or online, don’t keep the difficult aspects of being ill to yourself. Think about who in your circle would most closely understand what is happening to you. If they are someone you feel comfortable talking to, they will usually be more than willing to listen and be your shoulder to lean on. Because more often than not, you can’t do this alone. Here’s a quote that really drives this point home: “You are not a burden. You have a burden, which by definition is too heavy to carry on your own.”

3. Prepare a list of things that make you feel good and keep it with you. Whether it be taking a hot bath, some good old retail therapy, eating some ice cream, or binge watching your favorite show, allow yourself to do these things while you heal.

Follow this journey on Love, Light and Insulin

Originally published: May 29, 2018
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