Living with a disease that can't be seen is a struggle everyday. You look so normal and healthy on the outside but on the inside you feel like you are dying. You are in pain that no one can see. You have things going through your head that no one can hear. You have emotions that no one can experience with you at that time. You try to explain how you feel but no one sees how much of a struggle it is and that they will never truly be able to understand. They don't always understand what is so bad that I don't want to come out with them to eat or why it is so hard for me to even go shopping to get groceries. They don't understand why I don't handle stresses of everyday life like a normal person, or why I don't even want to... I don't want to do anything.
Now the problem that I have is that I don't just have one disease that can't be seen, but I have two. So for me this is even harder to tell my family and friends to help them understand. It is hard for them to understand that it is not that I don't want to come out and spend time with everyone, it is that I can't. I feel like I physically and mentally can't. My body hurts all the time. I constantly wonder if things will get better or worse as the day goes on. Then I start feeling guilty because I am not having fun or being a happy person that they want me to be. Then after that I start forcing a smile on my face and force myself to act a way that I do not feel. This then makes me that much more exhausted.
When I first noticed that there was something wrong with me was after my grandmother passed away. This was the start of the first disease that I have, Depression. When my grandmother passed I went into a downward spiral. I went out with my friends every night. I was drinking everyday and on the weekends. I was hurting myself. I wanted to die. I didn't want to continue to pretend everything was ok. I was tired of trying to numb the pain of losing someone so close to me. I got into a relationship that was not a good one to say the least, and I didn't know how to get out of it. I was told that I was not good enough and that I would never be good enough. I was told that no one would ever want me. I was told this for about 10 months before I made a decision. I wanted to leave and permanently numb my feelings. I was home by myself and I tried. I loaded the gun and pulled the trigger while it was pointed at me. But nothing happened. I tried again. But again, nothing happened. At this point, I start crying and wondering what it meant. What was going on and why wasn't this working. This is when I started to think maybe I'm supposed to be here for something bigger. This is when I decided I needed help and this was the beginning of a long road to finding myself and beating my depression. Once I got on medication I felt a little better. I started to not have to try so hard to be happy, it was just natural. When I lost a loved one, which has happened several times, I was able to cope with it a little better. I still have those suicidal thoughts, but I don't act on them. One big reason for that is my daughter. If I did not have her I truly think I would not be here today. This is one of my illnesses that keeps me from going and doing because I worry if I will be any fun.
The other disease that I have that no one knows unless I tell them is Sjogrens Disease. This is an autoimmune disease that I was just recently diagnosed with. Some of my symptoms are dry mouth (I'm always drinking water), and my body is always hurting like it is cramping up, I also have swelling in my glands that are in my neck which hurts when they do swell and makes my face look very puffy, and really bad fatigue (I am tired ALL THE TIME). I also have stomach pain, I don't know if it is related. Since finding this out I have had to change my whole diet to gluten free. But this is not something I like to share with everyone. I don't always tell people when I am in pain or when I am so tired that I can barely keep my eyes open. I don't want to look weak to others, especially since I am a nurse and a full time mother. Instead of telling everyone what is wrong I just say "No, I am fine just don't want to go out tonight." or "Not tonight I have a lot to do around the house." or even "Maybe another time, my daughter is fussy." anything to get me out of doing something because I just don't feel good. Yes, my family knows about some of the things that I go through but not the extent of how they are. I tell them just enough to satisfy them and make them stop asking questions. Stress is a trigger for all of my symptoms and the more stressed I am the worse they get. With everything going on, especially lately, I have been very stressed so therefore my symptoms are that much worse than normal. My family tries but they will never truly understand how hard it truly is, and how much harder it is as time goes on. Doctors don't know how bad it is yet so I haven't started any treatment yet. Once that starts it is no guaranty that it will work right away. This is causing me to be frustrated because I just want some relief. It is hard to go to work and act like I am fine. It is exhausting trying to slap a smile on and act like I'm not in pain.
To the ones that have an illness that they live with day to day, I know how you feel and you and I can and will get through this. There are a lot more people out there that know what your going through. You are NOT alone. Even on the days that it is hard and you think that you can not go on, you are not alone. It is ok to ask for help (this is still something that I'm working on). It is ok to not be ok.
To those who know someone or will know someone or who have come across someone with an illness that is invisible to the naked eye. It is ok to not know what to do. It is ok to worry about someone. Sometimes we just need reassurance that someone is there and on our side. Sometimes just coming over and sitting with someone helps a lot (it makes them feel less lonely sometimes). But sometimes we just do want to be left alone. We do not want to always talk about what is wrong with us. We do not always want to talk about our illness. That is one thing that aggravates me the most is someone constantly asking what is wrong when they have already asked and when they keep bringing it up. I want you all to know that we try to be strong and sometimes some of us don't like to be pushed into telling things to someone. Know that we are strong but we will break down at points because it becomes too much. When that happens, just being there for them and saying that it is ok to be weak when we need to.
Thank you to my family for being there when I need you to be. Thank you for the support, some more than others. Thank you for trying to limit my stress the best you can. Thank you for everything.
