Constantly Having to "Prove" Yourself

You're in pain and exhausted.  You're doing everything you can just to survive each and everyday.  Yet, it's still not enough.  You still have to prove it - to the doctors who dismiss you; to the coworkers who just don't get it; to the family and friends who mean well but just don't see it. In this episode, we are getting real about the anger, frustration, grief, and exhaustion that comes with living in a body that's constantly questioned. Chronic invisible illness is already hard enough without the extra burden of proving that it's real. This episode, this podcast, is for every person who has ever been told "you don't look sick."  For everyone who has begged to be believed, you shouldn't have to prove anything.  Let's show how we are strong and Stormproof.

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Transcript

0:01

You know when you constantly have to tell people that you're sick, even though you look like you're well and that nothing is wrong with you, it gets really tiring from me personally. I've had to hear that from everyone and everywhere. Yet there are some who believes that they're helping by saying, all that you have to do is change the way you eat, exercise more, take these vitamins and supplements and so on and so forth. But let's be completely honest, if I was to listen to you tell me about a physical issue that you have, such as a mole on you that you discovered on your face or on your body, and I tell you that all you need to do to get rid of that is to scrub that part of your body until it's gone you would look at me like, I'm insane. Wouldn't you? Now this mole could be cancerous or it could be a beauty mark. We don't know, but it's driving you up the wall because you are completely out of your mind with a worry. Now, when it comes to ones like me who have chronic illnesses that are invisible, it doesn't make them any less real. Just because you see the mole doesn't mean that it isn't anything underneath that that may or may not cause your concern. The point of the matter is watch what you say and learn to have empathy for others and what they go through with their bodies. We individually know our own bodies better than anybody else in this world. Now, recently I have had to go to the emergency room twice in less than a month just for a sickle cell crisis now, if I went to the emergency room where I used to live, I'm telling you, I would gotten, looks out the wazo. By saying,"oh wow, you're just coming to so you can get medication. You're a druggie. You're trying to get free medicine. Oh, you're trying to get medication from the doctors because you don't wanna get it on the street." That's an interesting concept, interesting thought pattern. But when I had to go to the emergency rooms where I am now, I actually went to three. The first one, it wasn't a good experience. At first I didn't even know that I was having a sickle cell crisis. I thought I had just pulled something because I moved. I newly moved to a new state. I just thought I tweaked something, but as time went on, pain got worse. So I went to the emergency room and I told the nurses and the doctors, I pulled something. But I think this could be a crisis because I do have sickle cell beta thalassemia. The nurses there actually took more care of me than the doctor did. The doctor looked at me and I really don't know what was going through her mind, because I'm not that type of person to judge you or judge someone by what could be going through their mind because I'm not God. But the way that I was treated by the doctor. It made me go back to how I was treated when I was in my previous hometown. I was not taken care of. I was not being listened to. I had to request for pain medication. I was sitting there for three, four hours maybe. That could probably be off, but I was sitting there for a very long time in pain, and then the nurse finally came to me, asked me how was I feeling? I said, I'm still waiting for pain medication. Even though the doctor said that she would prescribe it for me. I have not received anything. The nurse informed me that I have to request for pain medication. Hmm, interesting. Okay, so I requested for it. She gave me what us as Sicklers would compare Benadryl to help with pain. It did nothing. So I was at a point where I was tired and I'm like, I wanna go home. I can't deal this anymore. So, the doctor came, asked how I was feeling. I said, I wanna go home. I'm still in pain. I'm in functional pain, which was a lie, but I wanna go home. So I was discharged. The next day I went to another, uh, emergency room actually, and. I was taken care of. I was listened to. The doctor came in and spoke to me and he said that he was familiar with sickle cell patients. He treats sickle cell patients. He listened and he didn't even want to drug me, quote unquote. He wanted to make sure that my pain is under control so that I can function. And I appreciated that about him. It is very, very rare when you can find a doctor who would be willing to do something like that. Now, unfortunately, I had to go back to the emergency room again, and I was grateful to be able to see that same doctor. And he again, treated me as if I was somebody, and that is so, so, so hard to find because as many of us know when we're dealing with these things, with these invisible illnesses, it makes us feel like, number one, am I making this pain up? Number two, am I really crazy or am I really? Honestly, am I that sick or are these doctors really telling me the truth? I mean, granted, yeah, they went to school, you know, for all of this. And I'm just, me, you know, I'm trying to figure out what is going on with me and, I just don't know. But I've come to realize, and this is something I want you all to realize. We all know our own bodies. We know when something is wrong. We know what pain is. We know physical pain. We know emotional pain. We know mental pain. We know anguish because these invisible illnesses take away things that we love. Take away things that we want to do because when we put forth an effort to do something that we wanna do, we pay for it. We may be down for the rest of the night, we may be down for the next day. We may be down for the next week or two weeks. But the thing is. We have to understand that nobody, it doesn't matter if it's a doctor, a nurse, a parent, a sibling, a child, whoever, it does not matter who it is because they are not living our life. They are not living in our body. They're not living the emotional, mental, physical anguish that we deal with every single day. So I want you to understand how strong each and every one of us are because of what we're dealing with and what we go through. I want you to understand that, and I'm saying all of this right now because I am still in pain right now. I have pain in my chest, I'm dealing with. Another crisis still dealing with actually in my chest. And I want you to understand, no matter what it is that we're going through, what it is that we're dealing with, we are strong. All these storms that we're dealing with, we are strong. And we have to go through these things unfortunately, but fortunately, because not only does it make us stronger, not only does it help us to weather any of the storms, any of the hurricanes, the tsunamis, the tornadoes, whatever type of storm that you want to describe it as, it helps us to weather it because a whole lot of people will not be able to deal with everything that we're going through. It really would not. Now I do wanna make mention of another syndrome that we deal with, and that's imposter syndrome. Did you know that we are among the highest ones that are dealing with this? Now, what exactly is imposter syndrome? According to the NIH, it's, and I quote, a behavioral health phenomenon described as self-doubt of intellect, skills, or accomplishments, among high achieving individuals. End quote. How many of you agree with that? Now, this means that a person doesn't feel confident or competent. No matter what they achieve, even the little things that we achieve every single day. Waking up, getting up, getting dressed, cooking something, eating something, those are accomplishments for us. Those are things many people take for granted daily, but those are accomplishments. Look up on the internet and find out about the different types and traits. But, I'm going to share, with you, what I've been dealing with my entire life in regards to this imposter syndrome, and that's perfectionism, natural genius, soloist, people pleasing and procrastination. How did I know that I had these? Well, it wasn't that hard for me to figure it out. Every time someone liked what I did or told me that I should continue doing something because it was a great idea, I would immediately stop. Why? Because I didn't think I was worth the time, money, or attention like others were. Yes, I worked hard tirelessly. I put my all into what I would make or do. When someone would give me accolades or say, oh, that's beautiful, I would draw back into my shell thinking that they could do it themselves so that they could save whatever funds they have. That's part of the natural genius and soloist. When ones wanted to do things that I didn't want to do and the majority won, I just went along with them, even if it's just me and the other person. I would let them choose what they wanted to do, eat, watch, et cetera. True. I'm not used to being the one to choose what I wanna do, eat, watch, or whatever, because I'm used to putting others before me. I will get what I can find and I'm cool with it. When it comes to my close friends, yes, I will definitely tell them what they need to know. Not what they want to know, but with others, especially with ones that I'm getting to know. I'll tell you what you want to know at first so I can gauge how I can talk to you. I'll put your feelings, concerns, and everything above myself. I let you talk, express your frustration and everything. When do I get to do so? When my body tells me to. That's the people pleasing part. When my body shuts down and it says, enough is enough. You've taken on too much. It's time for you to rest, or it is time for you to go into the hospital. You've done enough. How many of you also deal with just a few of those? Now in regards to procrastination, I am not one that likes to do things when they're told. Even with this podcast, I have been putting it all for years, and I finally just said, you know what? Just go on and do it. Just put your heart out there and just go ahead and do it. I had made plans before. I had made schedules, before I wrote out episodes. I did everything, but I never went through it, and now that two episodes are out, I'm still working on getting the kinks out, so I apologize about that. I'm so grateful that you are still here with me in the second episode. I truly, truly am so grateful and thankful for you, but that's what procrastination does. It does not help when you are trying to do something that you really, really, really wanna do, and you make sure you write everything out. Make sure you have all the kinks out before you put yourself out there. You're flying blind. Hi, that's me. Don't forget to add to that brain fog. And all the beautiful things that come with these invisible illnesses. Whew. Don't let me get started on that now. I'll talk about that in another episode. Yeah.'cause that's, that's gonna be a little too much right now. But yeah, just remember, you are not alone. Not at all. So for this episode, I want you to think about. What imposter syndromes have you dealt with or do you continue to deal with? How do you feel about trying to overcome them? Share them in the comments? No, write them. Write to me. Let me know. I really would love to know what your thoughts are. That's what this community is about. This is what I'm trying to build. I really, really wanna build a community where we can encourage one another and not just talk about, oh, you know, I've had this happen to me and this is so bad and that's so bad. I wanna build an up building community, show how strong we are, how we can continue on and have positive things to say. So just remember, you're not alone. You have someone here in your corner. We're gonna fight this all together. Thank you so much for listening, and stay tuned for the next episode.