“I am a strong person but every now and then I also need someone to take my hand and say everything will be alright…”
I was recently asked by the very informative site http://www.themighty.com to write an article on what I would tell my parents what I feel they did right when I was suffering from chronic pain and also what I feel they did wrong. I am going to go back in time and write a letter to my dad, who was my closest support system during all the years I was suffering from chronic pain.
I know it must be really difficult to see your only child going through such hell because of physical pain no doctor can fix. I feel guilty all the time because I know I am not the daughter I once was and I miss me as much as you must miss me. I know I can be really hard to deal with and you are usually really patient with me. I am angry, depressed, anxious, scared, and feel worthless. I do not even want to get out of bed anymore and the only reason I do is for class or a doctor’s appointment. You are spending so much money on all these procedures, doctors, medications, and everything else we are trying in order to rid my body of this horrific pain no one can see. Some days I want to just die and then I think of what that would do to you and I cannot imagine hurting you more than I probably already have. I hate myself dad. I want to tell you how I keep going and the main reason I am able to keep going is because of you and how supportive you are during this awful time for me. I know no one can no longer see my scars or physical pain and many people think I am making this pain up. You never doubt me. You always believe me and never once have questioned whether or not I am in actual pain despite not being able to see my pain. I never have to prove anything to you. You believe me and I have never doubted your belief. When I feel as if I am going crazy, I remember that the person I love more than anything has never once doubted an illness he is unable to see.
You take me to all my doctor’s appointments and I am no fun to be around right now. I look at you and all the effort you put into helping me find a cure and I know that I cannot give up. You must really love me to take so much of your time to sit in waiting rooms with me half of both our weeks! I always feel so guilty when a new medication does not work. I always feel guilty when I have another procedure or surgery that the doctor promises me will work and it fails. I do not even feel like the medication or the surgery failed, I feel as if I failed. However, you never look at me like a failure. You never get down and out or seem consumed with worry as I do. You probably hide it very well because you care so much for me. You truly believe something will eventually work and how can I give up if you are so adamant that we will not stop until something works for my invisible illness? You keep me going.
I continuously feel as if I am letting you down and yet when I look into your eyes I do not see a dad who is upset with me. Only once can I remember you getting really frustrated with me because I did not believe a certain therapist/holistic healer could help me. You drove me into the city of Philadelphia and sat in the waiting room as I reluctantly and unwillingly went into the therapists office who specialized in invisible illnesses. I knew she could not help me and did not have an open mind and left her office crying endless tears. You got very upset with me on the drive home because I refused to ever go back to that office. You were not happy with my negative attitude and you yelled at me in frustration that crying would not help anything. I am sure you were not really mad at me but the invisible illness. It has to be frustrating for you to keep trying everything in your power to help me and my pain and yet nothing helps. You are human after all. I know deep down I am not letting you down but sometimes I forget when you get frustrated with me.
The two most important things you did for me during my darkest hours of chronic pain were believing in me and my invisible illness and never giving up on me. What more could anyone ask for? All I really needed was to be believed, validated, and supported. I truly cannot think of anything you could have done differently. In many ways you saved my life. Even now at the age of thirty five you are the one person who knows the ins and out of my journey with chronic pain. Sometimes I think you forget I still have chronic pain because I never talk about it and manage it so well and I just want you to remember that it is still there and there are times when I am extra quiet or cranky because of my invisible illness. Even at the age of thirty five, a mother myself I need someone to hold my hand say everything will be alright.
Your daughter Jessica
This post is dedicated to my hero also known as my dad.