From the outside looking in
I don't like what I have been feeling lately. I have been put in a postion that makes me uncomfortable. It is a place that I hoped and prayed that I would never have to be in. Its a place that I dont want to face. I must face it to have understanding of the others, the ones who love me. Through my sadness and fears I will learn from it, and I will carry on.
Being sick isn't all about me
I always knew that being sick affected the ones I love and the ones that love me. Sometimes I realized that more than others. I have learned that me being sick wasn't just all about me. But now more than ever I see it with my own eyes, and I am learning to understand. I always thought it would be my friends and family on the outside looking in at me and my suffering, but life has dealt me a hand I wasn't prepared for. My mom is sick. She has been tested for a million different things in the last ten years with no diagnosis or understanding from the doctors. That should have been my first sign, but I didn't want to believe the possibility of her being sick like me. Then a couple of months ago my fears became even stronger as I was forced to look at the fact that my mom had tested positive for an autoimmune disease. This was hitting too close to home and I prayed that she would never have to experience the pain and suffering that I am too familiar with. Then it happened. She had been tested for lupus and rheumatoid arthritis, as I too have been diagnosed with, when she got the diagnosis of Fibromyalgia. We had an answer to her increasing pain and suffering. I think that's when my own battle began. I am now on the outside looking in, and let me tell all of you out there who think that our friends and family don't understand...they dont. But I can tell you they suffer along with us in silence and many prayers and begging that just one day you will be able to smile through all the pain. So here is my letter to the sick ones from the ones who love them.
A letter to the ones we watch suffer from the ones who love you
To the one I love who suffers alone,
Please know that you aren't alone...EVER! I am here when you need me whether it be someone to talk to at 3 o'clock in the morning or someone to bring you lunch in bed. I hope you understand that it doesn't matter how many times that you need my help, It never frustrates me and I am always glad to help you in any way I can.
It kills me to know that at times you may feel like you are a burden to those around you...YOU'RE NOT! I never see it that way. You have spent your whole life showing me love and being compassionate towards me when I needed it the most and I am fully prepared to do the same to you. Please understand that when I try to crack jokes in the midst of your pain it's not because I think lightly of your situation...I DON'T! I just desperately want to see you smile again because your smile could brighten the room and I have missed it for far too long.
Please know that yes, I am disappointed when you don't keep appointments or plans with me but not because you have let me down, but because I look forward to the oppertunity to prove my love and loyalty to you despite your illness. I need you to know that I fully understand that you are not the same person you once were, but please know that I don't believe that person is gone forever, I believe that person is just struggling through their own battles as anyone would do when their life has been changed forever and they have to suffer through imaginable pain.
Earlier I told you that you are never alone, and while that may be extremely hard to believe, it is true. I may not feel the same pain as you, but the look on your face is enough for me to understand that the pain you experience is tremoundous. I may not understand what it is like to have my world fall apart, but my world isn't quite right without you by my side either. I may not know what it is like to not be able to feed myself or dress myself, but I do know how bad it hurts you to have to ask for help. I know how full of pride you once were and how embarrasing this must be for you, and while I may not show it to you it does kill me to see you this way.
I don't see you any different as you once were, in fact I believe you to be much stronger that I could have ever imagined. I watch you in agony struggling to do the things you once loved to do and it breaks my heart. I wish you could know how many thousands of times I have begged and pleaded with God to let me carry all of this pain and suffering for you. But for some reason there is a purpose to all of this although I know you can't believe that yet. All of us who love you and care for you want you to know that you have not done anything to deserve this, this is NOT your fault! I ask God every night why he would give such a horrible disease to such a wonderful person. And although none of us have the answers we will remain right here by your side, and we will not let you push us away.
I have wished upon a thousand stars every night in hopes that you would find some relief or that they could some how send a smile your way. I miss those smiles. Please know that we suffer too. We may not feel the pain that you feel or the hopelessness, but we are trying to keep it together for you as we are suffering by your side. I would give everything I have to make this better for you and would do anything in my power if I could just give you one day of relief.
Please know it kills me to see you cry, espescially when you cry out because the pain is too much to bear. And at the end of the day I cry too, just knowing that someone I love so much is fighting such a horrible battle against such a miserable disease. And though you may try to push me away so that I am not able to see you like this, I won't let that happen. I plan on being here through your good days and even more so through your bad. I will not treat you as though life is over because I pray for the day that you get to begin your life again. I will be right here by your side, fighting this awful disease with you, struggling through your pain, and still begging to carry this disease for you.
I like to believe that one day you will find relief, and when you do...when you are able to smile again, I want to smile with you and I want you to be able to know that I will be and always have been right here by your side. You may never know the tears I have cried for you or the begging and pleading I have done on your behalf.
You may never know the times I have tried desperately to hold it together because the pain of seeing someone I love so much in unimaginable pain is almost too much to bear. You could never know the days I wanted to just yell and scream because it it so unfair that something so bad has happened to someone so good. You may never know these things, you may never even remember all of the struggles you have gone through, but you will know that you were never alone. You will know that you will never have to go through this by yourself, I will alway be here for you!
They have been here the whole time
As rheumatoid arthritis sufferers I do believe that there were times when we are able to see how hard this has been for the ones who love us. I also know that there were times that we thought that those same people could never understand what we have gone through, and continue to go through on a daily basis. But I don't think we could ever understand how much this disease affects those who love us. I often talk about fighting this disease. I talk about how if you aren't at the point to where you can fight this disease for yourself, then you should start your fight by fighting this disease for the ones who love you and have seen your struggle.
So today look around you, I mean REALLY look around you and open your eyes and open your hearts. We need to see those people who are still here by our sides. We need to know that the ones who are still here suffered right along side us. They have cried real tears and begged and pleaded for us, just as we have all done for ourselves. They have been strong for us when we needed it, when we couldn't be strong enough for ourself. They have held it together for us when all they wanted to do is break down and scream and cry. They have been here fighting this disease with you the whole time.
Smile because you are never alone!
So when you look around today and really see all those who love you and are still here, smile! And I don't mean just a grin, smile big! Smile at those who fight everyday with you, for they have wished on millions of stars to see that smile again. If they aren't there to see you smile, then give them a call. Tell them some cheesy joke over the phone and laugh your heart out, for you know they would have traded everything they have just to hear you laugh again, even just once. We all have been to the point to where we have felt so alone in our fight with this disease, that we could never possibly see that the ones who love us were suffering too. But they were. And how blessed are we that out of something so horrible like Rheumatoid Arthritis came such love and compassion from those who never had to feel the physical pain. They are the ones who helped us become stronger. They are the ones who made this fight worth fighting.
Like I said before...YOU ARE NOT ALONE! You are NEVER alone! And to my mom who's fight has only just begun... I am here fighting with you. I continue to beg and plead every single day and there isn't a star in the galaxy that I have not wished on for you. I will be by your side and you will never have to fight this alone! Good luck and best wishes!
Published On: May 12, 2009