When You Receive the 'Fix' but Still Aren't Cured

I’m three days post-op from a surgery to place an occipital/peripheral nerve stimulator in my head, also known as a Reed Procedure. I had my trial stimulator for five days in September and it was an amazing week. I was in significantly less pain and because of that I slept better and had more energy during the day to live life more the way I had always imagined I would. I put on makeup every day and was able to go out to lunch and go to a movie in the same day! It wasn’t a cure, but it definitely was helpful. We forged on and fought the fight to get insurance approval for the permanent device immediately. There were times that things were a little bit shaky and we worried I would be denied, but our prayers were answered and I had the surgery scheduled!

I was beyond excited going into surgery. Things went well and I was programmed the following morning by a rep I hadn’t worked with before. She was a very kind woman and gave me some program options to try out and wished me luck. However, the programming was done while I was still on pain medications and long-lasting anesthesia for the five incisions. As the medication has worn off and I have regained sensation, I realized the device was not working as well as the trial did. I know it can be a long process trying to find the right combination of stimulation to control the pain, so I haven’t been too worried that these past few days haven’t been improved with the headache pain. I know it will take time and that things change as I heal.

The difficult part of all of this is that although I have prepared myself and I know that I need to be patient, my family and friends who support me have not been prepared for this. In their eyes, this surgery would leave me completely headache-free and much closer to my pre-sickness self. It feels as though every time someone asks how I’m doing and I don’t have the answer they want, I am disappointing them personally. I’ve done the work to accept my life with chronic pain and illness. I don’t expect a cure and I’m not waiting on one. I will likely always be in some amount of pain until the day I die. To my healthy friends and family though, that sounds an awful lot like I have given up. For those of us dealing with these incessant health problems, we know there is actually a world of difference between the two. I knew going into this surgery that it would be hard to keep everyone else’s hopes in check. Their prayers that I would now have a “pain-free life” make me cringe. It is so hard for people to understand an invisible illness and it’s even more difficult when you have received the “fix” but are still not cured.

I plan to have many more good days as I work to find the programs that work best for me, but I know there will always be some amount of pain. I’ve learned to have realistic expectations for my body and that has allowed me to be content in my life rather than always looking ahead for the next doctor with a promise to cure me. I’m working on communicating to others that I won’t “get better,” but I will always do what I can to have more good days. I haven’t given up but I won’t be disappointed anymore that I’m not pain-free. I’m not losing hope for myself but I don’t want to spend any more time being bitter and angry that I haven’t gotten my “cure.”

I want others around me to understand that I appreciate their support greatly but that I want them to join me in acceptance of my current way of life. Please don’t expect me “feel better” or “get well” or “pick up where I left off.” That isn’t likely to happen and I am OK with that now.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

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