Reactions to the Diagnosis

And that’s when I was kind of angry, I was mad. I’m like, seriously, I did everything I needed to do in my life. I was a good person, you know, that whole guilting or shame-- I was a good person. I treated, I thought I treated people well. I’m sure I was mad at people. I’m sure it was mean too, I mean, it’s not like, I-- you know, but overall, I, you know, figured, hey, I’m a good person.

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I was mad that I had it. I was mad that I wasn’t like everybody else. 

My mother is a physician, and she showed up at the hospital. She’d been talking to me throughout this process. And I was asking her for advice on what I should do, and she showed up just kind of in that window of time between when I had read the report and I found out that MS was the front-running theory and when the neurologist actually showed up. 

So, there was a few hours in there, and she showed up in the middle of that, and so she was a really strong support. And then the following day, my father came, who is in [LOCATION], so an hour away from where I live now, which I haven’t mentioned where, sorry. And we went out to brunch altogether after my first dose of steroids when I was allowed to leave the hospital, or late brunch, and then went back to my apartment at the time and kind of just talked. 

It was me, and my mother, and my father, and my girlfriend, and then another one of my classmates who I was really close with and had been a big support during this time and just talking about recapping everything the neurologists had told me so far and what the plan was going forward. And there were a lot of tears by all at the time. And my father’s a musician, actually. He plays trumpet professionally. And he took out his trumpet and played a really emotional song, and that prompted a lot more tears.

I just, I knew I was, I was so mad. I was like, why me, why me? And it turned around when I said, well, why not, why not me? I’m not that special I could be immune to everything in the world. And once I took that attitude, why not me, I’m like, okay. You know, I kind of accepted it. But I’m one of these people that my mother was manic depressive. And so, when you’re raised in a household with a depressed person, I wasn’t going to become depressed. I wasn’t going to. And I know it’s not a choice, but I always try to be on the upside of stuff and not beat myself up on it. It’s like, “Okay, I have this. Let’s take it on. Let’s, what are we going to do?” And that was it.  

INTERVIEWER: I was just wondering what it was like for you to get that diagnosis.

Relief. Because I had spent too many years in my own head, thinking that I was losing my mind. When you have these issues, when you have this pain that wasn't there and disappears, you know, MS will gaslight you if you're not paying attention, if you aren't aware. It will mess with your mind. It messed with mine, I guess that's all I'm saying.

I knew what can be coming down the road for me with different symptoms and different problems that can arise. I mean, I look at the fact that, one day, I could end up in a wheelchair, just because I know what can be coming down the road. But things have changed quite a bit with MS research, I think, since that time. So, I'm hopeful, particularly with the Ocrevus, that it'll help prevent me from further symptoms and weakness. It was good to find out as to whether or not-- to have a final diagnosis, of course, so that you can go ahead and work with it. But I don't know. I don't know. It didn't surprise me. I wasn't really quite shocked. And being the fact that I had medical knowledge from working with MS patients, I don't know. It didn't surprise me as much, I guess, and upset me as much. I just knew something was not right. So, to have the final diagnosis probably helped alleviate some of the unknowns. 

And I wasn't just going to take the news and lay down. So, it was sort of a mixed bag. We did a lot of crying. And I did a lot of late-night Googling. We did cry about it, because it's a loss. Because much like COVID-- I'll equate it to COVID. Could I do that? It's a loss because you don't know what tomorrow is going to be like. You don't know if you're going to be sicker. Like COVID, you don't know if you're going to walk out and pass the wrong freaking person on the street. I mean, because we don't know enough about COVID. Nobody knows enough about autoimmune diseases that you kind of wonder, am I going to be the lucky one or the not so lucky one? So, my whole-- you know, I call it my arsenal, my tool belt of food, mind, health, movement, all of that is because I don't know what tomorrow is going to bring. And so, I think that was the scariest part. Even though I was like 50 pounds heavier, obviously out of shape, I couldn't necessarily run with my kid then. But it's the whole that it might be taken away from me that you kind of go, wait a minute. You know? What can I do to-- you go through loss. You go through that whole grieving process where you're sad. You're angry. And then I think you kind of get to this acceptance where, OK, this is it. Now what can I do?

When I was diagnosed. So, at the very beginning I was newly married. I was at the point where-- so when I got married, I wanted to have kids. I wanted to start a family and be a dad and do all the things dads do and just be the average I go to work, I come home, I take care of my kids, I go to work-- just beyond the hamster wheel, if you will. Well, now I have this chronic disease. What does that mean for doing all the things dads do? I might not be able to play catch. I might not be able to-- if they want to go camping or hike a mountain trail, I might not be able to do that. When I have a newborn, am I going to be comfortable holding them while walking upstairs? It was worried about that type of stuff. How does this change the plan I had for my life? 

I really wasn't too worried. I just wanted to know more about it. And I know that there are several types of MS and so I wanted to know what type I had. And so once that was confirmed, I felt a little bit more comfortable because it was not one of the you know, more severe types of MS. But I knew that I was in the best place for any care that I might specially receive. So, I wasn't too worried. As long as you're knowledgeable about what's happening with your body or what you can expect moving forward, you know, there should be really minimal fear. 

I heard something that I didn’t want to hear and failed some basic human psychological tests and then just went into immediate denial. And in doing that, you do everything but take life seriously and heed the call in that moment. There is a call for you to benefit from this tragic announcement. You know, you have multiple sclerosis, and maybe you won’t be able to do anything about that, but you can do something about what you do about having multiple sclerosis. And that’s where the power is. The power to do something is the power to, at least in my experience, would have been the power to have a better life, you know, as opposed to turning my eyes away from what was mine to deal with because it was ugly. I would have seen that it is not ugly. It is. It is. Because it is, what is the best way to deal with it? And dealing with it, doing things about it would have been infinitely, would have benefitted me or anybody else who gets tragic information, infinitely more than saying, than just being in denial about it.  

I didn't want to have this disease. I thought if I ignored it, it would go away. I mean, that was my mindset as a 20-year-old who was on the cusp of having everything, literally. I mean, I loved my jobs. I didn't have to work two jobs. I just loved my job. At that point I wanted to be a therapist. I was working toward my licensed clinical social work. I was working on my master's degree in social work, and that was my goal, to get my LCSW. And I just didn't want to deal with it. 

I was in so much denial at the-- I didn't even begin even reading anything about it after I was first diagnosed. I don't know. I think I locked myself in my house with a bottle of tequila for a month. And then my dad got mad at me and made me come out. And I'm like, "I don't want to come out. I'm good in here." But I did. And I'm better for it. They upped my depression medication. And that's been a good thing. I feel like I'm sustainable right now. You know what I mean? I don't have big fears like I used to have fears when I first learned about it.