As humans, we take pride in people admiring our strength and capabilities. I’m sure if I were to ask you right now if that could ever turn into a negative- you’d probably say no. Well, I can say I completely disagree with you. I think that the minute your well-known strength becomes a negative, it can destroy you more than anything else. No, I’m not referring to when you think you are too strong at the gym and end up tearing something because you trying to be freakin Hulk in Planet Fitness. What I am talking about is the mental strength it takes to have chronic pain. The ability for your body to adapt just to keep you alive. What needs to shut off, what needs to be hyper aware, etc. The minute people recognize that strength, they feel like you can take on anything. Let me tell you, its not that it gets easier because of our strength, its that we get better at hiding it due to the strength.
I was the very first kid in my family to get a real surgery. Now, because of this, it was very new and scary to everyone. I was promised basically the world if I could be strong that day. I can say that I was pretty damn strong. I was having a pretty significant operation and not once did I freak out while I was there. But once I went home, I started receiving all sorts of presents, calls, and texts. By the second surgery, I was receiving texts, but not as many people stopped by the house. It wasn’t as new, so it wasn’t as scary (but still pretty freakin scary after the trauma). When I started to feel the significant pain in November, I had to get a shit ton of tests done. I needed a MRI on my shoulders, chest, neck, armpits, and on and on, I needed an EMG on both of my arms, and I needed more bloodwork than you could imagine. It was a full work up. I don’t want to talk too much about those two tests in case anyone will be needing them. But let me just say, I was in the MRI machine for hours- what a mind battle, but I got through it. Then the EMG is a test where they first send shocks into your arms and hands to see if the major nerves are reacting and then insert a needle into your muscle and have you actually move the muscle to see how it functions. All I have to say about that one, is it is the worst test I have ever experienced and I did that one TWICE. Anywho- by the time I was diagnosed with Complex Regional Pain Syndrome, I had already been through a lot. Too much in my lifetime and I didn’t even have a clue just how much I would go through.
Now why am I telling you this? Is it just to talk about all the gifts and nice words from people throughout the years? Absolutely not. Honestly I would give up all of that stuff to not go through even some of what I’ve been through. I am talking about this just to let you know how much I heard about support and well wishes early on. As time went on, this began to change. I was still receiving messages from people checking in on me or just to chat. But it was different. I began to feel more and more alone. I always knew that I had an incredible family there with me. I knew I had a community who would be there if I asked- but there was something still off. I was always rude to myself claiming that it was because I was upset about not getting attention. I mean what was I even thinking? That has never been me. But just the pain talking again. As I’ve been reflecting on these past few years, I realized exactly what was off. I became just that “strong girl” Alexis.
At the beginning of this post, I talked about being strong as a compliment. Normally, I would agree. However, in my case- it just isn’t. When you are known as being strong, people think you can take anything. They worry about you slightly less because they assume you can do it all. Yes, you will still get a text from time to time, but that’s about it. You have another test or another surgery or more pain and it’s just another day. I am not saying this sucks because you don’t get as much attention. I am saying that this is traumatic to someone with chronic pain because once they feel like “old news” they will be pushed even closer to giving up. I can say from experience that when you feel like you are fighting alone, you start to ask yourself what’s the point. You will start to doubt what you are capable of. Since I have had CRPS for 5 years, I have had a lot of time to get settled in this new me with a condition. But as time went on, I started to feel like amongst my family and friends that they always knew “I was strong” so I would be able to handle it. No matter what new complaint, pain, or symptom I had- I always got how strong I was. That was so hard because it was dismissing how hard everything really was. People became so reliant on my strength, that I started to be hard on myself when I struggled. “I should be able to do this, I’m strong”. The words sound so positive, yet they are so damaging.
Often I get told that I have a lot more knowledge than other people my age. I have a different look on life because of what I have gone through. I do agree that pain can change someone. I look through life with a completely different lens than people without pain. I learned to appreciate things. I am able to figure out how to speak about what I have been through and what I have learned. But this is all at a cost. I am 24/7 on guard and examining every single environment for danger. I use mental strength even when I don’t necessarily need it. My brain actually knows how to check out of life even when I am in a public place. I need to ‘dip my toes’ in every little thing I do before I do it all out. There is so much I have exchanged for this knowledge. I used to get so tired of hearing how I was strong. I don’t give a shit how strong I am, things are still hard. Sadly, I am just able to hardly show it. If I am ever out with you, I am mentally scanning for dangers. I am looking at all surfaces my arms are going to touch before I actually touch them. Sometimes my pain is so freakin bad and yet I can still pretend like nothing is happening. Sure, that’s strength. But it’s also extremely sad.
So often I wish I could play a movie of what my brain is doing in a day. It would make my life so much easier, but that is why I am speaking out on multiple platforms. No, I don’t want people to constantly ask me how I am. No, I don’t want them asking me what’s going on in my head. But I do want to ask one thing of you. Just acknowledge that all the strength I have-I still work for every single day, all day. The only difference is it’s internal now. So sure, I’m a badass. In the words of Tia B Stokes, I’m a Bad A Mothertrucker. I can confirm I am strong as hell. Anyone is who goes through chronic pain. But please don’t just rely on that. I have to work to keep that strength. CRPS burns strength up faster than it spreads (pretty damn fast). Remind me that there are people always with me, so I don’t need to use ALL the strength all the time. I’m a person too and things are hard for me no matter how long they have been happening to me. I might just be able to handle a little bit extra-kinda like a superhero ❤️.