Invisibly Visible

We all have friends-right? I mean no matter what you say, there is always some kind of support person. Chronic Illness has a bad habit of making its victim long for a strong support system and people who care no matter what. It is usually difficult to find the support necessary when your pain/illness is invisible. You know the saying, out of sight-out of mind? Well that is one of my most hated sayings. It isn’t so positive when the thing out of sight is the boiling pain making you sick to your core. I make sure to thank God every day for the support system I have. I’ll use my support system to help you understand what a person with chronic pain needs. It’s not as complicated as you may think.

Family can be absolutely critical. Sure they are important because that is your forever people. Those are the ones that (should) have your back no matter what. They are the ones you can return to no matter when. I understand that sadly, not everyone has family and for that I am sorry. But again, I will use my life. I was lucky enough to have a family who will forever hold each other up. Even with a dad out of the picture we are the closest any family can be. When I first got sick, it was a lot for everyone to take in. Especially since this wasn’t going to be some easy fix. Then came the time when they had to figure out the right way to help. I always felt loved-but it was tough for them to understand how to help me. I know what you’re probably thinking- just listen to the person who has the pain. Well, I’ll speak for us all when I say that sometimes we don’t even know what we need. I would be a happy camper having my family do everything for me……until I begin to hate it. That’s kind of what happened with me. I wanted help, but I knew it would hurt in the long run. How would I ever move out if I couldn’t function enough to make myself food, get dressed, do dishes, or laundry? Do I do all of that stuff now. No- but I am working on it. We are figuring out ways. But in a way my family had to learn that they couldn’t enable me in doing nothing for myself. Before I went for treatment in Baltimore, you would be lucky to get me to eat 4 bites of food because I wouldn’t let my family feed me (that was on a no list for me) and I also didn’t want to feed myself due to pain and exhaustion.

Now comes friends. This can be awfully difficult. Friends (especially now) are very hard to come by. It’s hard to find people who are real and get you. It’s not until you get older that you accept who your real friends are-and if you are anything like me, the number dwindles rapidly with age. But number of friends never mattered to me. It was always about who was real. Who did I know no matter how cool or pretty I was, they would be there. However, I feel like that is a pretty normal experience. But just like everything else in this blog, I am going to tell you that having chronic pain makes it even worse. Here’s why:

Having an illness come up is hard anytime, but especially when you are a kid/teen trying to grow up. Take me for example, my illness started junior year of high school. Right at the prime time of the awkward growing up-ness. When I first went on homebound (basically when your illness causes you to need to be off school for a certain period of time), I was full of support. As I mentioned in past posts, I was in a pretty strong theater group with friends who I called my second family. Outside of the theater department, I had other friends, but to me they were always just school friends. Not those that you hung out with any time away school. But friends nonetheless. I also had a few strong and influential faculty that I could look up and go to. When I initially went on homebound, I was sent so much love and support. People checking in, sending cards, and visiting me. I had a very incredible mentor agree to be my homebound teacher (shout out to Mrs. Jackson) and I was overall feeling so much love. Those who knew me well, knew I was in a really rough place of pain and misery. But how many of these people truly knew me? If I were to shut off social media and only allowed private conversations, would all these people still check in on me? Would they make the effort knowing damn well that no one would know of their kindness except me? If I’m going to be honest, no.

There is something I have always said and that is, when a tragic illness or not-so-great thing happens to someone, everyone rallies around them. Then, when the hype dies down, it’s as if the illness is old news. Sure this is true to a high school or community, but not to the person actually suffering. I experienced this exact thing. Once the hype died down from “Alexis’ weird pain condition”, I had quite a bit of people forget about me. It didn’t help when I stopped attending extracurriculars and parties. It would break my heart because I felt like everyone forgot I existed and that I was still fighting for my life. Any time I would confront someone in high school with not inviting me to something or checking in on me, I would get the response, “we just assumed you would say no or wouldn’t come”. Please take a moment and read that again. How would that make you feel? By reading that, do you think you would still invite me or check in on me even though you knew the answer. Listen, every time someone asked “how are you” I’d respond with eh I’m fine and immediately switch it over to being about them. Then, one day in high school, I got asked the question again. Only this time they said “no how are you really?”. Now, I don’t even think the person who said this to me reads this, but that’s exactly what people who have chronic pain want to hear. Our life and condition is so static that we feel like people get bored with the answers. Yes, I actually believed people got bored with MY illness. What a little change in wording that I still remember 5 years later. This person gave me a chance to actually share my pain and suffering without feeling like it is the boring preview before the new movie. This is the type of friendship someone like me needs.

High school is freakin rough. Friends come and go. You are awkward, they are awkward. Are you an adult or a kid? But the worst thing is that most friends aren’t really friends. Holy shit all you need for a real friend detector is to get an illness. They run from you like ants. Again, you become old news. Sometimes you are “too depressing” no matter how hard you try to put the mask on (not a literal mask, but one of 24/7 happiness). I can say that I experienced just this. I was no longer the fun one going to every party, at school from dawn to dark, and just present all the time. If you know me, you know that even when I’m physically there, I’m not mentally all there. People don’t like that. It brings down the vibe. Freakin dumb. But I did have a couple people who refused to leave me. No matter what I did, no matter how often I saw them, no matter how much they knew, they were there without a single hiccup of consideration of leaving me. I will explain why this is so important-but first-let me introduce you.

Front: Mallory; Back (left to right): Wilson, David, Jordan

My friends are the type of people who will give you their whole heart if you show care and love back. Unlike many, they don’t pressure you into being a specific type of person because they just want who you truly are. These are the perfect type of people someone with an invisible illness needs because sometimes we can’t give you any because we hardly have enough for ourselves. They each have taught me one new thing surrounding my illness throughout the years:

Mallory- True friendship is dedication to someone no matter what. I don’t need to stress over being abandoned as a friend because it doesn’t matter how often I hang out; just the quality of the friendship when I do hang out. Sometimes I need a push to hang out and do something. That outside force helps me fight the CRPS brain screaming no.

Wilson- It is good for me to keep coming out and being with friends. I need to make sure that I try something before I immediately say I can’t do it. (e.g. walking and using a spoon for ice cream). Oh also: I’m pretty and worth a lot as a person.

David- I don’t need to do everything we go and do. I also don’t need to feel like I must stay the whole time. It’s not a big deal and David never acts like it is. Whatever I need, I have him there.

Jordan- I don’t need to attend every little thing for me to be good friends with people. It’s okay to just say that I can’t that day. Not a big deal and we aren’t missing out on the whole world.

Something they all have in common is love. Complete unconditional love. When I was completely gone, not talking at all-suffering- I knew that they had nothing but care for me. I knew whatever I needed (whether silence or hanging out) they would give me. I know what you are thinking. This is the type of friend group everyone needs. I completely agree with you. Everyone deserves people like this, but especially people with chronic illness. You want to know why? I don’t need to stress about them understanding everything I’m going through. I know they never will, but I do know that they will learn how to be there for me and what I need. So often I get asked by them: “what do you need Alexis? You need me to come now? You need us to drop off ice cream? You need to come for a movie night? Or do you need to be alone?” These people don’t have an ounce of judgment. They know that I am doing what is best for me every time. They ask questions. I don’t have to prove anything. Let me repeat that. I don’t have to prove anything. I am in tears writing this because ever since I was diagnosed, I have felt like I need to prove just how horrible I am feeling or what shit I am going through. The only place I felt safe enough to be me is with my family. What a great feeling it is to not have to prove to people my age.

Here’s the thing. We all like hanging out. We all like going to movies, bonfires, parties, vacations, etc. Well, I can do that now. Is that because my health did a 180? Nope it is probably at about a 90 currently. It’s because I’m with a group I don’t have to hide from. I can show my sickness. I can show my pain. I can show my mental blanks that embarrass me in public. But I can also show happiness and that doesn’t mean my illness is suddenly gone. I don’t have to use energy to present like a puppet. That energy can go towards the people I love. And I love this group. I have spent this whole past week with them. In the beginning I was stressed, anxious, scared, and every bone in my body wanted to cancel. But you know what I see on the other side? I want to hang out again already. I feel secure. Relaxed (as much as I could be). Safe. I just feel safe. Finally, I don’t know if they read my blogs or listened to me or watched a video, however my friends (unknowingly) did something that is critical for my health and improvements. They pointed out all the wins throughout a day. “Alexis lifting that chair” “Alexis wow your writing” “Alexis coming out every day” “Alexis you did so well today and kept up”. I am in complete bawling tears because sometimes people forget my battles because it’s invisible. Well not this group.

Lastly, I want to share one of my biggest fears. Sharing my deepest pain and suffering and being judged for it. I would put my life on the line to present normal to whoever I was talking to. I didn’t want them to know my illness at all. I could advocate- but only to those who knew what I had and how bad it was. Something I realized is once I began advocating and sharing more of my pain and showing “behind the scenes” the friends I love took that as a lesson and only asked how to help or what would be best in the situation. They remind me now not to assume the worst of myself. And for that I am forever grateful for my “A- team”.

I have a question, what is your A team? You have met both the family and not blood related part of mine. Your team can be as small or as big as you want/need. But can I offer one piece of advice? Be honest. Tell them everything and then some. You will be shocked and it will just lead you to a calmer state of mind when you are around them. I promise you’ll be surprised by their reaction. If you don’t think you have an A-team, I get it. I felt like that once too. But think hard about that one group that you feel like if you got better, you would be out with them and close as ever. Let me tell you, whoever you are thinking about loves you already. INCLUDING your illness. Still don’t think you have one? Message me. I’d love to be the first member.

Note to my friends: Thank you all for everything you taught me. I cannot wait to keep coming out. Thank you for making me feel safe. That’s all I ever needed and it took me this long to fully trust you. Better late than never, right? ❤️ Alexis 2.0

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