Shock & Denial, Friends of Diagnosis
The emotions that follow a diagnosis of MS are beyond complicated. As I mentioned before, there's an aspect of relief that you finally have an answer for whatever bizarre symptoms your body has presented you with. There's an element of surprise; how can I have been so healthy and normal for nearly 27 years when this is apparently what my body was bound for? There's absolutely all the stages of grief - you grieve for the life you imagined, the life you used to have, the health that you may or may not get to enjoy moving forward. There's also anger, the feelings of "why me" and "what have I ever done to deserve this?".
As I begin to work through my various doctor appointments, MRI's, blood tests and beyond, I began to tell the people around me about my diagnosis. Obviously my mom was there every step of the way, as was my husband. (He's been a literal rockstar through the chaos that has been our last 6+ months.) I told my close friends who had been nagging me about being M.I.A. and anti-social because they just simply didn't know what was going on and that denial of information and reasons wasn't fair to them. I told my in-laws who, like my mom, were ready to help and support me in any way they could. I told my supervisor and another coworker because this new medical revelation was obviously going to impact my work schedule in the coming weeks and months; fortunately they were also both incredibly supportive. In telling all of these people in my world, the reaction when I initially told them and throughout the first few months that followed was how well I was handling it, how strong I was being, how good my attitude was. What they didn't realize, was that in reality I was terrified.
My diagnosis came at what was already the most challenging and scary time my family has ever experienced. The same day I received my diagnosis, February 6th, my mom and I came home to find my dad completely out of it, having difficulty speaking, and just all-around delirious; we thought he had had a stroke. Now to give you some background, at this time my dad had been battling multiple myeloma, an aggressive form of blood cancer for nearly 8 years. When he was diagnosed, he was given 6 - so if there's a fighter in me, it was definitely inherited from that man. He had had a few bouts of pneumonia over the previous month but we were all just pushing toward a clinical trial that was a mere weeks away that could have been our answer to his illness. So my mom and I left my neurology appointment with my diagnosis, did some shopping (which she won't admit, but I know was absolutely just to cheer me up and distract me from the news I've just received), and went back to their house where we found my dad in bad shape. Fortunately his primary doctor was our good friend and neighbor, so we called him over and after a mini-exam he said it sounded like the pneumonia was back. We've had a lot of scares with my dad over the years so my mom knows the routine; she called the non-emergency ambulance service so that he could be safely transported to his oncologist's preferred hospital, and we followed it there in our own cars. At this point, MS was the last thing on my mind despite it entering my world officially a mere 6 hours earlier. I was reeling from the reality that this could be it - this could be the hospital trip that my dad never came home from. I'll spare you all the painful details of the week that followed, but sure enough, a mere 3 days after I received my diagnosis, on February 9th, I lost my mentor, my go-to for advice, my provider of tough love, and my dad. Talk about a whirlwind of emotions.
That whirlwind is why everyone was seeing such a good attitude and so much strength; that wasn't actually what they were seeing, they were just seeing me ignore the reality of my situation while I grieved a greater loss. Despite knowing the loss was going to come eventually, I wasn't ready for it - I don't know if you ever really can be. But that loss put me in a position that no one asked me to be in, but I knew I needed to take on. If I panicked and stressed about my diagnosis and impending treatment, that was only going to cause panic in those around me; my mom lost her husband of over 30 years, my little brother had also lost a parent. My brother-in-law and his wife had recently lost a dear friend and coworker in the line of duty as a police officer, so they were also grieving alongside my mother and father-in-law who are both retired law enforcement. My husband was supporting literally everyone close to him through major losses. The last thing I needed or wanted was for one more thing to add to the emotional turmoil that January and February had already brought everyone. I figured if I played it cool and shrugged it off, everyone else would be able to stay "chilled out" about the diagnosis too. To be fair, it worked. I kept saying out loud it wasn't a big deal, but in reality my brain over time was saying louder and louder that it was; the more I recovered from the initial shock and grief of losing my dad, the more I was forced to face my own health reality.
While I was the most open and conversant with my husband about my fears, I don't think I was even fully honest with him about how terrified I felt. And the farther out from that brutal first week of February I got, the more real the whole MS thing became; I couldn't keep focusing on my loss, I had to focus on the reality and challenges of my future, I had to face it head on which I had been avoiding more than I realized. The moment that really snapped me out of my delusional avoidance occurred on the day of my first med infusion.
Because 2018 apparently hates me and wants to continue a reign of terror over my luck and my life, the infusion center approved by my insurance was one of the best in the region, but was also across the street from the hospital and ICU where my dad had left us just months prior. I hadn't been back since the night he died, and I had committed initially to never go back near it again. Unfortunately, my MS life had other plans. The morning of the infusion I was ready to get started on the journey of fighting this new disease; we had our entertainment for the day, my husband made sure to bring a blanket and water, and we were on our way. Then we pulled into the parking lot and I was no longer ready. I was sitting in the car with my infusion center to my right, the dreaded hospital to my left. Not only was it where my dad had eventually passed away, but I could also look directly at the area of the hospital where I had sat with him several days during which he had his own infusions at the hospital over the last several years. That was when it really hit me: all I wanted and needed in that moment was the person who had done it, who had fought disease, and tried meds, and sat through infusions, faced the unknown every day, and all the while been a strong (albeit stubborn) badass who was determined to "fight the good fight" as he always put it. I wanted someone who got it, because as amazing and supportive and dedicated as my husband and family and friends had been to this point, they didn't get it, not even a little. I wanted the man who could recommend his own infusion movies and shows and books, the one who could tell me which snacks rid your mouth of the steroid taste best, the one who could tell me the whole thing sucks and it's okay to hate it, but you have to push through it anyway. That was the moment I finally admitted to myself that I was scared. I was scared and I was mad and I was frustrated and everything was not okay, but that all of those feelings were - they were absolutely okay.
So all of that depressing personal business to say: it's okay to feel mad, sad, scared, frustrated, unsure, furious, fearful, wronged, and even defeated some days. Hell, most days when you first get diagnosed - those emotions are normal. It's also okay to tell people that's how you're feeling because if you don't, the ones who don't "get it" never have the chance to. Along the way there will be things your friends and family simply can't "get," but that's not their fault. That's the time in which it might be best to find a community who does get it - an outlet or even just a person who gets it. While I found online resources such as MyMSTeam and MS Shift are helpful, today I finally opened the cover of Love Sick by Cory Martin and it was the most refreshing thing I've read since being diagnosed. After being overwhelmed with mailed and online resources and and research and peoples' "well my friend has MS and said this," and all of the good intentioned-not always helpful advice, Cory's memoir was a breath of fresh air. As I turned page after page I found myself saying, "Oh my God that is exactly how I felt and I didn't even realize it" over and over again; as a young person with MS writing about her experiences facing her diagnosis and living beyond it, she gets it. Something about finally finding someone else - even though I have obviously never met her, I don't even know what she looks like - who totally gets this experience helped me to accept all the emotions I've been hit with around it. So if you're feeling stuck, or you're struggling to get those around you to understand, put the science aside for a minute and be real about its impact on just you as whole person. Not what it's doing to your myelin and your brain and your spinal cord blah blah blah - tell people how it's impacting your world and your life and you. If you're not sure how, I genuinely recommend reading this book and maybe passing it on to those in your life, because quite frankly after today I think I'll do just that. Accepting this new world is a learning curve, but 3.5 months later I'm finally hitting my stride in taking this whole thing on. It doesn't happen overnight, but it does happen, and there are people out there who get it or can get it. You just have to find them, or help them to get there.
As I begin to work through my various doctor appointments, MRI's, blood tests and beyond, I began to tell the people around me about my diagnosis. Obviously my mom was there every step of the way, as was my husband. (He's been a literal rockstar through the chaos that has been our last 6+ months.) I told my close friends who had been nagging me about being M.I.A. and anti-social because they just simply didn't know what was going on and that denial of information and reasons wasn't fair to them. I told my in-laws who, like my mom, were ready to help and support me in any way they could. I told my supervisor and another coworker because this new medical revelation was obviously going to impact my work schedule in the coming weeks and months; fortunately they were also both incredibly supportive. In telling all of these people in my world, the reaction when I initially told them and throughout the first few months that followed was how well I was handling it, how strong I was being, how good my attitude was. What they didn't realize, was that in reality I was terrified.
My diagnosis came at what was already the most challenging and scary time my family has ever experienced. The same day I received my diagnosis, February 6th, my mom and I came home to find my dad completely out of it, having difficulty speaking, and just all-around delirious; we thought he had had a stroke. Now to give you some background, at this time my dad had been battling multiple myeloma, an aggressive form of blood cancer for nearly 8 years. When he was diagnosed, he was given 6 - so if there's a fighter in me, it was definitely inherited from that man. He had had a few bouts of pneumonia over the previous month but we were all just pushing toward a clinical trial that was a mere weeks away that could have been our answer to his illness. So my mom and I left my neurology appointment with my diagnosis, did some shopping (which she won't admit, but I know was absolutely just to cheer me up and distract me from the news I've just received), and went back to their house where we found my dad in bad shape. Fortunately his primary doctor was our good friend and neighbor, so we called him over and after a mini-exam he said it sounded like the pneumonia was back. We've had a lot of scares with my dad over the years so my mom knows the routine; she called the non-emergency ambulance service so that he could be safely transported to his oncologist's preferred hospital, and we followed it there in our own cars. At this point, MS was the last thing on my mind despite it entering my world officially a mere 6 hours earlier. I was reeling from the reality that this could be it - this could be the hospital trip that my dad never came home from. I'll spare you all the painful details of the week that followed, but sure enough, a mere 3 days after I received my diagnosis, on February 9th, I lost my mentor, my go-to for advice, my provider of tough love, and my dad. Talk about a whirlwind of emotions.
That whirlwind is why everyone was seeing such a good attitude and so much strength; that wasn't actually what they were seeing, they were just seeing me ignore the reality of my situation while I grieved a greater loss. Despite knowing the loss was going to come eventually, I wasn't ready for it - I don't know if you ever really can be. But that loss put me in a position that no one asked me to be in, but I knew I needed to take on. If I panicked and stressed about my diagnosis and impending treatment, that was only going to cause panic in those around me; my mom lost her husband of over 30 years, my little brother had also lost a parent. My brother-in-law and his wife had recently lost a dear friend and coworker in the line of duty as a police officer, so they were also grieving alongside my mother and father-in-law who are both retired law enforcement. My husband was supporting literally everyone close to him through major losses. The last thing I needed or wanted was for one more thing to add to the emotional turmoil that January and February had already brought everyone. I figured if I played it cool and shrugged it off, everyone else would be able to stay "chilled out" about the diagnosis too. To be fair, it worked. I kept saying out loud it wasn't a big deal, but in reality my brain over time was saying louder and louder that it was; the more I recovered from the initial shock and grief of losing my dad, the more I was forced to face my own health reality.
While I was the most open and conversant with my husband about my fears, I don't think I was even fully honest with him about how terrified I felt. And the farther out from that brutal first week of February I got, the more real the whole MS thing became; I couldn't keep focusing on my loss, I had to focus on the reality and challenges of my future, I had to face it head on which I had been avoiding more than I realized. The moment that really snapped me out of my delusional avoidance occurred on the day of my first med infusion.
Because 2018 apparently hates me and wants to continue a reign of terror over my luck and my life, the infusion center approved by my insurance was one of the best in the region, but was also across the street from the hospital and ICU where my dad had left us just months prior. I hadn't been back since the night he died, and I had committed initially to never go back near it again. Unfortunately, my MS life had other plans. The morning of the infusion I was ready to get started on the journey of fighting this new disease; we had our entertainment for the day, my husband made sure to bring a blanket and water, and we were on our way. Then we pulled into the parking lot and I was no longer ready. I was sitting in the car with my infusion center to my right, the dreaded hospital to my left. Not only was it where my dad had eventually passed away, but I could also look directly at the area of the hospital where I had sat with him several days during which he had his own infusions at the hospital over the last several years. That was when it really hit me: all I wanted and needed in that moment was the person who had done it, who had fought disease, and tried meds, and sat through infusions, faced the unknown every day, and all the while been a strong (albeit stubborn) badass who was determined to "fight the good fight" as he always put it. I wanted someone who got it, because as amazing and supportive and dedicated as my husband and family and friends had been to this point, they didn't get it, not even a little. I wanted the man who could recommend his own infusion movies and shows and books, the one who could tell me which snacks rid your mouth of the steroid taste best, the one who could tell me the whole thing sucks and it's okay to hate it, but you have to push through it anyway. That was the moment I finally admitted to myself that I was scared. I was scared and I was mad and I was frustrated and everything was not okay, but that all of those feelings were - they were absolutely okay.
So all of that depressing personal business to say: it's okay to feel mad, sad, scared, frustrated, unsure, furious, fearful, wronged, and even defeated some days. Hell, most days when you first get diagnosed - those emotions are normal. It's also okay to tell people that's how you're feeling because if you don't, the ones who don't "get it" never have the chance to. Along the way there will be things your friends and family simply can't "get," but that's not their fault. That's the time in which it might be best to find a community who does get it - an outlet or even just a person who gets it. While I found online resources such as MyMSTeam and MS Shift are helpful, today I finally opened the cover of Love Sick by Cory Martin and it was the most refreshing thing I've read since being diagnosed. After being overwhelmed with mailed and online resources and and research and peoples' "well my friend has MS and said this," and all of the good intentioned-not always helpful advice, Cory's memoir was a breath of fresh air. As I turned page after page I found myself saying, "Oh my God that is exactly how I felt and I didn't even realize it" over and over again; as a young person with MS writing about her experiences facing her diagnosis and living beyond it, she gets it. Something about finally finding someone else - even though I have obviously never met her, I don't even know what she looks like - who totally gets this experience helped me to accept all the emotions I've been hit with around it. So if you're feeling stuck, or you're struggling to get those around you to understand, put the science aside for a minute and be real about its impact on just you as whole person. Not what it's doing to your myelin and your brain and your spinal cord blah blah blah - tell people how it's impacting your world and your life and you. If you're not sure how, I genuinely recommend reading this book and maybe passing it on to those in your life, because quite frankly after today I think I'll do just that. Accepting this new world is a learning curve, but 3.5 months later I'm finally hitting my stride in taking this whole thing on. It doesn't happen overnight, but it does happen, and there are people out there who get it or can get it. You just have to find them, or help them to get there.
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