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Four years ago, I went to my doctor complaining of excessive tiredness and having so much pain in my hands that I couldn’t squeeze my shampoo bottle while showering. Four years ago, I received a call telling me I needed to see a rheumatologist right away because my blood work came back extremely abnormal in the autoimmune area. I can remember the exact emotions I felt in that moment on the phone and how scared I was, and I can remember the fear I felt the day upon receiving my diagnoses. While I knew that rheumatoid arthritis and Sjögren’s were bad, I didn’t know that they would be life-altering.
Each day, I find my mind going back to the same thing. I keep wondering why, after all of this time, I still am in mourning of my pre-sick self. Maybe I’m sad because I never got to say goodbye to who I used to be; I was so happy and had goals I wanted to achieve. Just a year or so before, I had challenged myself to run, and I came to find that running made me feel at my best and was a form of therapy for myself. As if in an instant, any happiness drained itself from my body and my running came to a halt. I also quit my job because I couldn’t handle the stress and pain my body was being put through and I had severe depression weighing me down and telling me I needed to choose myself or possibly not be here anymore.
Once I couldn’t work anymore, I felt so disappointed in myself and to this day, I want so badly to contribute to society. I want to not wake up each day thinking that my life lacks purpose. To say I had hopes and dreams is an understatement. I saw a future filled with traveling and finding my life’s purpose. Instead, I lost my happiness from depression and any ounce of pride I ever felt inside had left me. When your thoughts switch from thinking about one day buying a house with your significant other to just wanting to wake up one day and feel a little less pain, it makes you realize that you just really needed a warning that this was to come so you could have been more prepared.
With the help of a therapist, I have been through the cycle of grieving and accepting my chronic illnesses multiple times, but I don’t know that I’ll ever be completely OK with my situation. I’ve actually come to a point where I don’t even tell people anymore how I’m actually feeling when they ask because I feel like a broken record and a broken soul that can never be fixed. I have accepted that no matter how many times you try to tell others what you are feeling and experiencing, they may never truly understand. You may lose important people in your life as you have to say “no” to many outings, but those who honestly are sympathetic to your situation will stick around.
While I was told I’d have this forever, I did think that with medicine, I’d be back to my normal self eventually. Maybe I was naive to think that. I, instead, seemed to have more symptoms as time went on. Just yesterday, I found myself saying out loud that I felt like I needed to be in the hospital hooked up to an IV because I couldn’t handle the pain anymore. This statement was coming from someone who is absolutely petrified of hospitals. The pain ranges from my fingers to my elbows, to my neck, hips, knees and ankles, and I turn into a child not knowing how to help myself.
I try so often to think of how I can explain the type of fatigue I experience because it’s probably one of the hardest components of this. I try to explain to my husband that I’ll be going through my day and all of sudden, fatigue hits me. It feels as though if I don’t lie down at the moment that I’m going to collapse. It feels like the time in your life where you have felt most drained and energy deprived, but it happens multiple times a day and lasts two to three hours each time. No matter how much I rest, I still feel like I haven’t slept in days.
Since I never was able to say farewell to the me before I got sick, I am taking this moment to do so now, and hoping that anyone else who has experienced similar feelings and situations will be brave enough to do this one day too. If I have discovered anything positive about myself throughout this journey, it’s that writing has been the best outlet for me in coping.
I’ve just been told that my body will never be the same again, so I wanted to say goodbye to you as I await the arrival of this new body. You gave me the privilege of being left-handed and being artsy since I was so young; you gave me the rhythm and moves that helped me find a love of dance that lasted me 10 years. You gave me the courage to go on stage and dance while my family and friends sat there to watch and support me. You sent those smiles to my face that others would often tell me made their day; you made me a genuinely happy person that would never allow the bad things in life to take over. You gave me the ability to take up running at the age of 26, and you showed me that if you really put your mind to it, you can achieve things you didn’t think you could do. You stayed with me while I began a weight loss journey and achieved what I set out to do. You gave me countless miles of walking around and exploring life like one should while growing up. I don’t think I gave you enough credit at the time, but you managed to keep going on the days where you barely had the energy to do so. You got through going to college full-time, while also working 30 hours a week and trying to make time for my family life and also a social life. You won’t be taken for granted and will be remembered and appreciated for the rest of my life. I will miss your energy. I will long for the days of being pain-free and being able to walk around with no issues. I will miss our shopping trips, as they will be few and far between soon. I will miss vacations where I didn’t have to worry about planning around taking breaks and rests throughout the day. I will miss a body free of medication in order to function. Most of all, I will miss the feeling of being me the most. My new body will be different and not the one I have known since I was born. I will still be me inside, but I’ll never really feel the same again. Thank you for the time I was able to have you.