As a spoonie of 12 years, I have fought much of my battle with support from healthy friends and family. However, about four years ago, one of my very best friends of nearly two decades became ill and what was thought to be an acute condition has plagued them for years with no answers, just “maybes”, “I dont knows” and failed medications.
While it pains me to watch someone I love so dearly have to fight for their health and answers, there is a selfish part of me that is glad I have them. We shared a strong bond, and now an even more unique reason to be close as we both understand the struggles of life with a chronic illness. The doctor appointments, sick days, depression, anxiety and relying on other people to care for us. We both have a unique view into the other’s life because we experience similar things.
Although we have different conditions, and theirs is technically undiagnosed, they are, nonetheless, chronic illnesses that have been silently robbing us of the best years of our lives. I never thought I would be more grateful for them than I already was or that I could love them more than I already did, but, somehow, their chronic illness has made me love them even more and value their friendship beyond what I ever dreamed imaginable.
Now, I must admit, I would never wish this on anyone, but, I selfishly am glad to no longer be alone. To have someone who so completely knows my struggles and understands the small and quiet victories I celebrate in private. Like going a whole week without being late or calling in sick to work. Or the “one good day” you get amidst the chaos of a chronically ill life. After years of fighting on the front-lines with no one beside me, I have an ally, not just my reinforcement troops for when things become too much. I have someone fighting next to me, and albeit a different illness, their fight is no less stressful, severe or pain-filled. So, to my chronically ill best friend, I write you the following letter that I hope will bring you comfort on bad days and more strength on the not so bad ones.
My beautiful friend,
I know you have been struggling. I see it in your eyes, hear it in your voice and I feel it within the deepest parts of my own heart because I was once where you stand now. Ill, struggling, lonely, undiagnosed, asking questions and getting no answers, feeling like my life was being robbed from me and there was nothing I could do to stop it. I was depressed and bitter at the loss of my once vibrant and accomplished life. I yearned for the ability to do things without thinking of the consequences my body would pay and the freedom to be myself again. Being ill is isolating; no one understands your unique struggle and it is hard to open up because it can make you feel weak, helpless, hopeless and dependent. Feelings you are not used to because you were once the epitome of ambition, accomplishment and strength.
I want you to know that I see you. I see your strength, dignity, fortitude and also your pain. I feel your struggling as if it was a piece of me as I so distinctly remember how I felt when going through testing, medication trials and doctor after doctor. To see someone I love so dearly have to endure the same things I have encountered on my journey to finding answers breaks my heart. This is not the life I would have ever wished for you, but, know I am with you in every needle poke, waiting room and procedure.
I also want you to know that whenever you speak to me about your fight, you don’t need to justify your feelings to me, for I, too, have felt nearly all of those things. Your feelings of disappointment at another failed medication, lack of test results, no answers or a bad physician. When you feel you have no more options and are completely stuck. The days where you hurt so badly you cannot leave your bed. The soul-crushing sadness when a treatment you held out hope for doesn’t work or a test you thought held the key came back normal. The anguish of going to bed and knowing relief shall not greet you in the morning. Or the day after. Or the week, month or year after. The stress of facing another day of unknown pain. I get it. All of it. And I know I cannot change things, but I can promise you that I will lay with you when you cannot get up. I will cry every last tear in my body with you. I will fight for you when you see nothing but endless days of pain. And I will pray for you whenever your heart is weary.
Finally, you have often said to me, “I know I shouldn’t complain because you have it so much worse,” and those words pierce my soul like knives. Our generation was raised to never complain because someone always “had it worse” than us and this saying has been one of the worst things for my mental health. It has led me to have to defend my depression and tell people I deserve to feel sad. It has left me screaming at people trying to make them hear me and understand that I can be sad. I can mourn the life I used to live. I want you to know that just because we have different conditions does not mean your suffering or pain is any less than mine. Please erase that saying from your mind. While yours has been shorter in duration, has it not robbed you of the very things you saw being taken from me all those years ago? While our pain may be in different areas of the body, is it not pain all the same? Though our medications are different, do they not cause the same or similar side effects and letdown when they fail? Just because you are newer to this journey does not mean your struggling is any less nor your pain less valid than mine.
The only thing I have more of than you is experience. So, please trust me when I say things will get better. But, they will also get worse. There will be highs and lows. Answers and lack thereof. Pain and some mild relief. All I can promise you is that I will be there for every single moment, cheering you on, cheering you up or crying over ice cream. Your pain is real, your feelings are valid, and my pride in you is endless. You can do this and you are never alone. As long as I am breathing, I will fight with you. I love you.
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