In January of 2023 I had a LIFESAVING brain surgery. I had a Chiari Malformation Decompression, which is a fairly common type of brain surgery. Before I had maybe 30 minutes of upright time before a migraine and seizures overtook me. There was not a day where my head didn't hurt, and that isn't an exaggeration. I was a zombie barely counting as a functioning human. Everything in my life paused and in my family's life. I just got the post operation all clear from my surgeon! So to have some physical ability back is beyond amazing!! However, it's brought up some things I wanted to touch on. Not to downplay the amount of blessing that have been brought on from this surgery but to bring awareness to able bodied minds.
I have multiple genetic conditions that will be with me my entire life, so that being said I'm not "fixed". However, we did seem to fix a major problem such as the seizures. I will still have bad days and limits to what my body can physically do, much to my dismay. Yes, I will still need accommodations and help. Sadly, this didn't resolve the other problems I have. So please bare that in mind when telling me "you are all set now right, you can be productive now?". I know most of these comments come from a place of joy for my positive news, which, I appreciate. Please remember that some things don't have cures, we are doing are best with treatments and management plans to give ourselves a "normal"life. Many with chronic conditions already feel like a heavy burden and comments about work and being productive can be very detrimental to mental health. We know that we may not be the most productive or helpful at times. We are trying with all we have, but sometimes we are just trying to survive. There is a large assumption around the chronic health world that if we just do (insert thing) we would be healed. This comes from the abled body perspective that it's always in your control. Take a second to think about it from our perspective, if it was something within our control to fix, Wouldn't we? Many of us are at our breaking point, so throwing solutions at us is simply a reminder of the bigger mercy we are under. If things like this were easily controllable there wouldn't be sick people. So please be kind and remember that people are always trying their best, even if their best looks different than yours.
Another point that I don't see talked about often is how medical trauma affects you. Medical PTSD is a very real thing. I recently had a burst of panic attacks because I had a headache. I was so triggered by that because my brain went straight to "the surgery failed", when really it was just the weather. Doctors offices and hospitals are so anxiety inducing for me, even just sitting here thinking about it triggers anxious feelings. Thinking back to the MANY horrible experiences in those places and the thought it could happen again can be paralyzing. I've had several spinal procedures with just numbing instead of being under anthesia and I could still feel most of it. It was one of the most painful things I've dealt with. People still can't brush up against my back without me clenching up. It's not something I am consciously doing but the body stores trauma. Cue the title- forever the sick kid- these memories will stay with me forever. The brain tries to protect us from going through it again. Every persons anxiety will display differently, it may not always be hyperventilating, it could be nail picking or negative thoughts. So just another reminder to be kind always! We ALL have demons we are facing, don't add to someones' list.
So i'll always be chronically ill thats just a fact but thankfully we are finding ways to manage this. Even though someone may appear fixed, we my truly still be struggling. We are so grateful for the relief we are getting but don't discredit the struggles they are still facing. Remember for the most part this is out of our control and we are trying our best. So beautiful souls; go spread your light!
Thank you for all the support!
-M