What #YouAreNotAlone Means to Me…

https://www.youtube.com/watch?v=CZJvBfoHDk0

Let me start off by saying I know so many say these words. I am not saying they do not know what it means at all. I believe we all have different interpretations of these words; most are close to being the same. Others have a totally different meaning, which is great. 

What I am going to say is what these words mean to me.  They really hit me hard. Why? Because even though I had and have many people in my life that are caring, loving amazing, wonderful and inclusive. I have for a long time felt alone. It is nobody’s fault, I do not even blame myself, though I still feel alone at times.

Life has been a rollercoaster ride. I have dealt with some things that others have not. Does it make me any worse or any better than anyone else? Absolutely not. We all have our pasts and present and futures. We all have our own feelings, and we should never put anyone down or say how yours were worse than any other person’s life.

We all have our triggers in life. We also all have our point of feeling and being alone. Being alone also has its own different meanings.

So back to what being alone means to me. It has different meanings at different times. Being alone is such a scary feeling. I could be in a crowded room and feel alone. It can come on to me out of nowhere. Whether it is my health, my anxiety or my depression it happens at different times and at any time. I have been dealing with this for many years. I believe and know that when I was young, I had depression and anxiety, it just was not talked about back then. How could I not? No excuses here, but when you are five years old and had to deal with having leukemia, and not being allowed to go outside or be a kid, in the sense of not being active, I learned to deal with being alone. Like I said it was not anybody’s fault it was just real-life situation that everyone tried to make the best of it.

Being alone was normal for me as a kid. Was it a good thing that I reverted to being alone? Probably not, but the body and mind of a child adjusts to what you have in front of you.

By the time I was able to go out I really did not have the skills to meet people. Most of my childhood friends were people who came and talk to me. As I grew up, I started to talk to more to other kids. It was in Junior High School I started to really try to go out and meet others. If you would ask my family, they would have said I was more outgoing earlier in my life, but that was overcompensating for things I did not know how to do. I would exaggerate and be overly friendly to make sure nobody knew the little scared child that was there. You see when you do not go to school from kindergarten until half of fourth grade, there were many times you are alone. As a coping mechanism I got “use to it.” You adapt. You learn to “accept.” But as a child what is accepting? For me it was put everything away in the back of my mind and not think about it. There are so many things in my childhood that I do not remember. I am partially glad about that, but some things are coming back slowly but they are.

Let me get back to “being alone.” The meaning of this to me is that even though you could be surrounded by many people, you can still feel alone. For me I am dealing with different medical diagnoses as well as depression and anxiety, some of that because of my diagnoses and some because of my insecurities I have had for so long. For a long time, I was hiding those insecurities and feelings. Sometimes I acted out because of my insecurities as well. No matter what I did growing up it was never enough. Not to anyone else but to myself. Even when I did something that someone was proud of me, I would find fault.

Why? Honestly, I do not know. I am still working on that. As a matter of fact, I still do that to myself. Not that anyone sees that side of me, or if they do it is more subtle then how I feel toward myself on the inside. I have always been hard on myself. I guess that is because I felt I was always catching up to everyone else. Let me say this, it is a terrible way to live. I wish I could describe it better on here or even to my counselor, at times, I beat myself up over it.

When it comes to feeling alone it come in different waves. Somedays I feel nobody understands me. I feel like no matter what I say people will not understand or even care. Ever been asked “How are you feeling?’ and think “do they really want to know or are they just trying to be polite?” I then usually go to my standard phrase “I am hanging in there.” Whether I am or not it is easier to say that then having to explain to them what is really going on. I have this internal fight with myself on whether to tell them the real me or tell them what I feel they want to hear. People get tired of hearing this hurts or that hurts. People start to avoid you if you are always negative. So, you lose if you say too much about your illnesses or you lose when you just, please people and saying, “I am hanging in there” or “I am fine.”

When I was diagnosed with Sarcoidosis, I had no clue of what this disease entailed. I was under the perception, some of it by others and some because I wanted to be okay as well, I was told “At least it is not cancer.” Or “you take some prednisone, and you will be fine in 6 months or so.” Both are wrong statements, well at least for me. This battle has been long and hard and emotionally and physically draining. I have fought hard and continue to do so. That much I know is part of me. I will keep helping others as much as I can. I will try to keep people happy and hopefully encouraged to do so themselves.

What I cannot promise is that I still will not feel alone. It is something I fight almost every day. I know many would not think of me this way. I have perfected the fake face and the fake feelings. Well actually I do not know if fake is the right word. It feels fake to me. In my heart it is not fake. I really want to be happy; I want to feel like I am not alone, I also want to feel like I am helping others.

So, this brings me to this. This weekend I was at a Sarcoidosis Summit, while there I was telling people how I do not like to be seen as the “Voice of Sarcoidosis.” I do not like when people compliment me, do not get me wrong it is nice to be noticed, but it truly is not the reason why I do the things I do. I say this a lot. I say if I could stay in the background, I would love to.

I never believe or believed I am better than anyone else. I always say we all have our own battles, and we fight those battles a different way. When it comes to advocating, I get embarrassed when I am complimented. That is because of the feeling of being alone and to this day the feeling of being inferior. I also never wanted to what they call “in front of the camera” literally or figuratively. I know and understand what people say they need a face to the story, but I honestly say to myself “Why my face?” I do not feel and probably never will feel that I should be the face of Sarcoidosis. I think that is my self-trying to stay alone.

One reason I do talk about what I have done is because I want to let other people in our communities know one person can make a difference. Know your words and story matter. Know that if you touch one person’s life you have made a difference.

I want to end this by telling you all a couple of last words. Do not think because you are with someone, you cannot feel you are alone. Many people are like me and feel alone in crowds. Find out something that will help you when you are alone. It can be music, movies, reading, counselor or just time to yourself to find yourself. Sometimes I just need to be with me and in my feelings. I need to re-organize my thoughts at times.

When I say #YouAreNotAlone I mean we are here for you. I am learning to open myself up. If you do not open yourself to others, you will never be able to feel like someone is here.

Finally, please do not be afraid to ask for help! It does not make you weak to ask for help. It makes you strong that you can realize when you need help and ask for it!

I say this all the time. But Men you do not have to be alone! You can ask for help! You don’t “Have to Be Strong or Suck it Up!” You are stronger to ask for help!

#YouAreNotAlone

Author: fjr311

Frank Rivera- Founder/President- Sarcoidosis of Long Island Founder/President- RareNY Frank Rivera founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis to raise awareness for Sarcoidosis in the government sector. He has also spoke at two Congressional briefings for Sarcoidosis. Frank is a National Ambassador for Foundation for Sarcoidosis Patient Ambassador for Illumina Frank organized RareNY in 2016, to raise awareness for Rare Diseases in New York. He organized “A Day for Rare Diseases” in October 2016 in New York with Global Genes. The event raised awareness for all 7000+ rare diseases to the public.

4 thoughts on “What #YouAreNotAlone Means to Me…”

  1. Frank.. I read this article today in part, it’s perfectly written that when a person problem solve, you become valued. When you make yourself valuable, you become valued. I know, cheesy, but true! Finding ways to be strategic in order to put yourself in a position of value is key to breaking through the threats. You’ve broken the chains of threats of feeling alone.
    Frank you are an amazing Leader💜

    Liked by 1 person

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