Jamie Jasinski

@jamie-jasinski | contributor
Jamie is a 34 year-old from New Jersey who loves being a mom to her rescue emotional support dog, Jackson. She suffers from RA, Sjogrens, Fibromyalgia, Depression, and Anxiety, but has found writing to be a part of her own therapeutic process.
Jamie Jasinski

Grieving the Person You Were Before Chronic Illness

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.

Jamie Jasinski

Why I Think It's Acceptable to let Your Illness Define You

So often, we question who we are and how we define ourselves as individuals. This seems to fluctuate throughout the years as we self reflect, experience life events and grow, and as we accomplish things that we set out for. Sometimes, we change through no choice of our own; you have to take what life throws at you and adjust yourself accordingly. For me, it was illness. I was diagnosed with multiple diseases at the age of 28 very unexpectedly, and it took me a while to grasp how serious and life changing it would be. Speaking as someone who never imagined a life with rheumatoid arthritis or Sjogrens or fibromyalgia or mental illness, everything in my life that I had and was working towards felt like it went up in flames. There was the me prior to becoming ill, brimming with positive qualities, but then I saw a different me after becoming ill that brought out parts of my inner being I didn’t know existed. All of the traits that I had and loved vanished somewhere in between my layers of pain and depression. Lately, so much of what I am hearing is: “Don’t let your illness define you.” Or: “You are not your illness.” Although I can appreciate the lesson trying to be taught here, I have been feeling like I am drowning in a sea of motivational quotes that were written by people who may not actually have had experiences with chronic illness. I’m supposed to acknowledge that I am a person with rheumatoid arthritis, Sjogren’s, fibromyalgia and mental illness. I am supposed to just think of it as me having disorders, never changing who I am, but existing separately from me. These phrases are supposed to be optimistic and make you feel like you haven’t lost the core of your being, but they don’t resonate with me. Believe me — I have tried to see myself and illness as two separate things. I have tried to describe who I am outside of me being ill, but as someone who has had to deal with life on life’s terms and experience the drastic changes that came after my diagnosis, I am responding with, “how can it not define me?” I don’t think someone else gets to speak your truth for you or make you feel bad for not seeing things as they do. I’m denying who I am if I say otherwise. Illness defines me in that new characteristics and traits came out in me to fight and live with my diagnoses. I changed, my body changed, my mental state changed, my way of thinking changed and the things I cared about changed as a direct result from my illnesses. My illnesses have taken away my ability to work and earn an income. They have made me fearful to go to the doctor’s, to do simple daily activities and to live a life that I want to live. They make me feel like I don’t hold purpose and have lost my identity. I’ve gone from never wanting to have to depend on others to having to ask for help more in these last five years than in my entire life. Sadly, I have been able to feel my mind turning to places that were dark, and feel myself grasping for parts within that I thought were reserved for tragedies. Alternatively, current me values life a lot more. For the past five years, I’ve done nothing but advocate for myself in the medical world. I have found strength that I would have never been introduced to had I not had to get procedures done or endure excruciating pain and fatigue. I’ve learned how to write out my feelings about my illnesses so that others might connect or even just understand the constant struggle within. I’ve gone to therapy to specifically confront being sick and to try to accept all of the changes in myself that occurred. Others may be able to live their lives seeing themselves and all of their defining traits separate from their illnesses, but I can now see myself in totality. It’s as if I was living life just knowing primary colors, but then one day an experiment was conducted, mixing the colors together, and I am now able to see so many other colors. I had select attributes that I felt told a story about who I was, but my life was tested, and new qualities surfaced from those challenges. I am more mindful and cognizant now more than ever before, and am now able to see a complete picture of everything that exists within myself.

Jamie Jasinski

Grieving the Person You Were Before Chronic Illness

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.

Jamie Jasinski

Duppet: A Short Film on the Reality of Depression on Amazon

Living in a society that stigmatizes mental health and prioritizes physical health makes those who are struggling with mental illness afraid to talk about it. It also may make those who are trying to understand more about it afraid to ask. The movie and television industries have been representing different aspects of mental illness more than ever before, but has it been enough? Enter John Poveromo. He’s a stand-up comedian from New Jersey who travels across the country telling relatable jokes; he also personally struggles with depression and the isolation, loneliness and anxiety that often come with it. When you see him on stage during one of his shows, you would never know he is battling this invisible mental illness. Perhaps he does a good job of masking it with his comedic personality, or maybe he’s been behind the scenes using his personal stories as inspiration to create something meaningful that people can connect with. Poveromo announced on social media in October, during Depression Awareness Month, that he had written and starred in a short film available to watch on Amazon Prime, titled “Duppet.” Poveromo has been open about the fact that this film was created due to his personal struggles with mental health. Duppet is an adorable puppet who represents the part within Poveromo that wrestles with depression and anxiety. In just a short, but heart-tugging 11 minutes, you will see the personal story of Poveromo as a stand-up comedian trying to go about his everyday life. But at every turn he is met by this puppet character who hopes to take the joy out of moments whenever he can, creating self-doubt and exacerbating his feelings of isolation. What makes this film unique is it takes the form of a children’s television show by incorporating a puppet, while it tackles adult problems. It confronts the issue of mental health in a way we’re not used to seeing. Poveromo takes his passion for comedy and finds a way to merge it with the emotions that strip away his psychological well-being. While the film does have a child-like nature to it, its language and innuendos make it best for an adult audience. I found watching the film comforting, despite the struggles being addressed. In the short timeframe this film played, I felt every emotion Poveromo was trying to convey. I felt a sense of solidarity knowing that other people actually understand what I go through on a daily basis within my complicated and uneasy mind. This film did justice to all of us who live with mental illness by showcasing the endless questions that one thinks when they are in a situation that creates anxiety, or how sad it can get when we push people out of our lives that we need because we don’t have the energy to get out of bed. We live at a time when people are constantly shoving what seems to be their perfect lives in other people’s faces via social media, and we often overlook how staged those moments are and how masked people’s true feelings have become. Sometimes it’s so difficult to try to explain to people who have never had any form of mental illness what is going on within our minds, and this film did that for me. It uses the character of Duppet to show how the darkness lurks and eventually begins to take over your life, if you believe all of the negative things in your subconscious. The most incredible moment to me was when Poveromo is on stage at one of his comedy shows, and you don’t see Duppet with him. It’s during this small part of the film when you realize that Duppet isn’t on stage with him because that’s where Poveromo feels his happiest. He doesn’t allow his isolation and depression to take over that moment. “Duppet” is just one of the short films that the producer, Chris Fitz of ifitfitz production company, John Poveromo and four other filmmakers from the Toms River area of New Jersey plan to release through August of 2020. They plan to release one short film a month as part of their Short Film Project. In the meantime, you can find “Duppet” on Amazon Prime.

Community Voices
Community Voices
Jamie Jasinski

Grieving the Person You Were Before Chronic Illness

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.

Jamie Jasinski

Grieving the Person You Were Before Chronic Illness

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.

Jamie Jasinski

Grieving the Person You Were Before Chronic Illness

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.

Jamie Jasinski

The Issues I've Faced as I Plan My Wedding While Chronically Ill

Are there any others living with chronic illness who are currently trying to plan a wedding? I waited until year 30 of my life to be proposed to. I had an overall healthy life in my early and mid 20s, and I met someone who I could do new and adventurous things with. Our relationship was great, but he always made it a point to say that we needed to live together first and see how that went before ever being engaged. I yearned for the proposal speech; I wanted to know his deepest feelings about me in a moment where it was just he and I at our happiest. It did take just about five years for that moment to happen, but it was actually surprising to me, knowing that I was sick and he was not, and he could have left me for that reason. We had said that we would have a “long” engagement and not rush into things. Why not enjoy the time I had always waited for? Well, like most couples, it’s hard to wait when you want to marry someone as badly as we did. Unlike most couples, I didn’t have any type of advice on how I’d actually be able to plan the wedding with my conditions. In fact, my conditions mostly worsened after choosing a venue, and here I am three months away from the big day trying to figure out how I’ll get everything done in time. I wish that I could have found him sooner so I could have possibly been able to do this during a healthy and happy state of my life. You learn while dealing with illness that you will have a lot of “what ifs” and “why me” moments, and I knew I had to stop thinking in the past to be in the present. I needed to accept this new life that I had been dealt and figure out ways to work with it. So, how exactly is wedding planning all that different if you have physical and mental health conditions? For one, the slightest bit of worry can wind up sending you into a flare-up. Before you know it, worry becomes anxiety and anxiety brings out the symptoms of fatigue, pain, and depression. There are also times where I cannot help but be sad, even though I know this should be the happiest time of my life. It’s not about the wedding or the stress of the planning; it is my depression, and I cannot magically turn it off. It becomes tiring trying to put on a happy face for others when that isn’t the reality of your situation. You may also have to think very differently when looking at venues. Most people would look at the room – but I was looking at the stairs and asking if there was an elevator in case I was having pain in my knees the day of the wedding. I’m worried about the pain I’ll be having if my fibromyalgia is bad or if it might be a day where one of my multi-day migraines come on. I know that each day brings a new variety of symptoms for me, and the worst part is that I cannot predict what kind of day I’ll be having. Every couple of weeks, I have a serious talk with my fiancé about what I’ll do if I am so exhausted on our wedding day. It’s a serious and true worry for me, as every single day of my life, I spend a couple of hours sleeping during the day in order to be able to function. We still have yet to come up with a plan, but I’m trying to stay positive and not think that the worst will happen. Another instance I didn’t expect happened with my bridesmaids. My bridesmaids were all supposed to wear an emerald green color. When I realized the time and effort that it would take to go shopping multiple times and see if their dresses were along the lines of the color I was going with, I wound up changing the dress color to black. They can wear any black dress they want to, and it makes it much simpler. You learn along the way that you must minimize decisions that you need to make, delegate tasks to others, and that you may ultimately end up with simpler plans than you had imagined. Most recently I booked my makeup artist and found myself asking her if my makeup would be able to get me through my day and hide the sweat that I have as a side effect from a few of my medications. The same scenario happened with my hair. I have a lot of hair loss, again from medications, and it didn’t dawn on me until I was looking in the mirror the other day that I was going to need to choose a style that would essentially make my hair look a lot fuller than it actually is. My photographer was scheduled for two locations, but I wound up changing that knowing that going too many places would add to my fatigue. During the first days of wedding planning, I focused on the big stuff – but now that I’m down to the details, this is where I’ve noticed that I’ve needed to adjust my prior planning. I’ve always been someone who wants things in their place and am more type A personality. This event has really shown me that you must be flexible in life and things may not always go as you had imagined it to be. Did I think that I would have these worries 10 years ago? Absolutely not. Was I prepared to become ill?  Absolutely not. Has becoming sick taught me anything that I didn’t know about myself before? Definitely. I didn’t know that I had the ability to fix things that were not going my way. I was always so hard on myself when I made a mistake or something unfortunate happened. Now I’m forced to accept challenges, find a way to work with them, and try to adjust accordingly. Not everyone may feel the same as I do or even think that this seems difficult, and that’s OK. We all have different pain tolerances. We all see difficulties differently. What one person may seem as the end of the world, another would only see as a small bump. However, from my personal experience, it’s been nothing short of a challenge for both myself and my fiancé. As the planning continues, I hope that I can push through each day, and I wish anyone in the same position the same. We want to hear your story. Become a Mighty contributor here . Getty image by DragonImages