COVID COVID Go Away – A Test in Self Advocacy!

Written by Deborah Bloom | September 23, 2020

COVID, COVID go away and please DO NOT come back another day….

Do I go…or do I not? I am sure I am not the first or the last to grapple with this decision since the start of COVID. Recently, this is where I found myself. Not only do I have chronic migraine and other comorbid conditions, but I also needed major surgery. 2 nights in the hospital, no visitors allowed (even my husband), and an 8 week recovery was daunting to say the least!

There were days of increasing worry, feelings of helplessness, tears and worsening levels of pain from migraine. Every day I wracked my brain endlessly trying to figure out how to turn this around. How could I feel like I had some control and support in this situation? I know that I am not alone in having to deal with a situation like this. Those of us who live with migraine often have multiple other diagnoses, and unfortunately chronic illness doesn’t understand the need to take a break during a pandemic! Self-advocacy to the rescue, maybe?!

Advocating for Myself

As it turned out, self-advocacy really was the key. Learning to advocate for myself made all the difference as I faced the unknown, and here are some of the things I learnt:

  • Talking To The Doctor: My parents always taught me “the squeaky wheel gets the grease.” So, in a respectful way, I frequently communicated with the doctor and his staff my anxiety about this procedure. Questions about updates on hospital visitor policies, other things I could do to help, and even whether it was safe to delay the procedure were just some of the issues.
  • Trying to Impact Hospital Policy: I spoke with the patient liaison for the hospital, wrote to the president of the hospital, and even emailed the president of the corporation running the hospital. I urged them all to change this policy that seemed to have a double standard in terms of who “needed” a support person and who did not.
  • Organizing My Hospital Bag: I organized my overnight bag well ahead of time to include not only essentials, but also things that would bring comfort. Photos, my own pillow, a favorite blanket, and of course that much needed extra-long phone charger! I also had to prepare my own arsenal of daily medications – in their original prescription bottles. Hospitals don’t necessarily have all the medications available or on formulary, so this was really important. I am made multiple copies of my medication list and how I take everything.
  • My Migraine Plan: Hoping for the best but planning for the worst also means being prepared for a migraine attack of course! I brought multiple copies of my migraine plan should an attack rear its ugly head during all of this, my rescue medications, favorite flavor of Gatorade and hydration powders, and of course migraine friendly snacks!
  • Day of Surgery: When the big day finally arrived, my plan was to self-advocate to every person in the pre-operative area about the medications they were going to give me and any potential side effects such as nausea. Honestly, like many of you, I am often “that patient” who is different and has the unexpected happen! And finally, a pact with my husband that if he couldn’t be there, to remind my doctor about all these things when he was called after the surgery.

My Promise To Myself

Above all, I promised myself that I would do my best to self-advocate during my stay, even if groggy from medications or “green” from nausea. It can be challenging to speak up and find your voice even at the best of times, but immediately post-surgery is uniquely challenging. However, it is SO IMPORTANT! Self-advocacy is such an important part of chronic illness, but one that sadly we often set aside. Remember, your healthcare is about YOU, and your relationship with your doctor is a PARTNERSHIP. You have a right to speak up. You have a right to be heard and taken seriously. You have a right to be involved at every level!

So how would you cope with a situation like this? Have you needed surgery recently and what was your experience like? How do you survive your fear-filled moments, and what do you do when anxiety about the unknown takes over?

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