Jenna Green: Chronic Illness Advocate
When Jenna and I first start messaging, we immediately have a connection. After all, her blog is called ‘Full of Grit and Grace’ and I work under the name ‘Queen of Grit’. We both understand that in order to get through all the curve balls life is going to throw at you, you’re going to need that perseverance- that grit, but more importantly, you’re going to need that community. That’s a big part of why Jenna works so hard to continue to share her story. Because although chronic illness looks different for everyone, no one has to go through their battle alone.
Dylan: So you were telling me you have MS.
Jenna: Yes, and I talk about it constantly. Apparently that’s advocacy, but I just never shut up.
Dylan: I think that’s really cool, because on my own personal journey I’ve had epilepsy for like 20 years, and for a really really long time, I didn’t talk about it with anybody. It was just really really hard for me. So I admire your courage and your ability to talk about it so openly.
Jenna: Oh! Thank you so much! It took me some time at the beginning, of course. I took some time to process before I really shared. Probably took like a whole month. I went to my grandmother’s in California. I came back and had my first treatment. There’s nothing that cures MS or that stops progression- it’s just designed to limit the number of relapses that you have.
They called me the morning of the treatment, and they were like, “Oh, uh, your insurance denied this. Do you want to reschedule?” And I was like, “Oh, no. We’re not rescheduling. They can go ahead and bill me for the 20 grand. I don’t care.”
I was obviously a little feisty. I’ve always been a little feisty. I had a lot more energy back in the day. I had no idea what advocacy was, but I was like, “Well that’s not cool. And I have a voice, and a privilege and a platform.” I mean, I’ve been a social media manager for… since before social media was a thing. Thankfully when I was diagnosed, I already worked for myself, so while I had to scale back on a lot of clients, I still had a flexible job.
“I can make someone else feel like they’re not alone.”
So that’s when I was like, “I have to talk about this.” If there’s one thing I can do with this just… terrible feeling, diagnosis, disease that I didn’t ask for, didn’t want, do not recommend, would return- you know, there’s one thing I can do. I can make someone else feel like they’re not alone. Maybe I can just do that.
And then I was like, well… maybe I can do more than that. And that had kind of like a domino effect, I guess? I really was quite surprised that this was all advocacy. I was like… I don’t know… I just don’t shut up about things that are important to me. And they’re like, “Here’s an award for emerging activist of the year!” And I’m like, “That’s a thing? Cool.”
Dylan: That’s amazing!
Jenna: Thank you! It was amazing. The MS Society gave it to me last month, and I guess I had no expectations whatsoever. This was the first year I really got involved with the MS Society in a more official kind of way.
Dylan: So how long ago did you get your diagnosis?
Jenna: It will actually be 4 years next week.
Dylan: I don’t really know a whole lot about MS. Are there different types?
Jenna: There are different types. So MS is a neurological disease that essentially it’s your immune system- something goes wrong. They don’t know what causes it; they don’t know why you get it. There are some statistics that can give you a higher risk, but they can’t tell you why I have MS and you don’t.
It’s essentially a neurological disease that attacks the nerve coverings- it’s called the myelin sheath- in your brain and in your spinal cord. So those are the things that control your whole body. There are 3 different kinds of MS. So I have relapse remitting MS. It is the “best” kind to get, I guess. And then progressive MS, which is the “worst” kind. And then like 90% of people go from relapse remitting MS to secondary progressive MS over a period of like a decade. You stop having full on relapses and you just have a general decline.
The thing about relapse remitting MS is the name is a little bit misleading. It implies that the period of remission are like you’re not having symptoms. But most of the time that’s not really true.
My first flare I had optic-neuritis, which is like a twitching in my left eye. And that did go away after the flare ended, which was great, but not all of your symptoms will disappear after a flare up. I’ll have chronic fatigue, and I have a movement disorder called dystonia which is like a specific type of spasm in my feet and my shoulder. It’s a little more common in Parkinson’s and ALS, but spasms in MS are pretty common.
Dylan: So even when you’re in the relapse stage, when you go out in public, people can tell that you have MS or there’s something going on?
Jenna: It depends. MS is called a snowflake disease because it presets differently for everyone. So I have a friend who’s had MS the same amount of time as me, grew up in the same area; we have very similar lives, but we have completely different symptoms, and we’ve had completely different symptoms.
And we’ve had completely different experiences.Things affect us differently. So there’s a whole bunch of different choices for the disease-modifying therapies, they call them. There’s no way to tell what will work for you, and what will work for me. Everyone is different. And there’s really no way to tell what will work for you, or how your disease is going to progress.
Obviously, some people end up in wheelchairs. That’s the thing I think people think of first when they think of MS. “Oh, I’m gonna end up in a wheelchair.” Or “I’m gonna have a cane.” I do have a cane, and I use it when I need it, right? But most days, you would have no idea just by looking at me that I have MS.
“The one thing that has been awesome because of it has been the community. The people that I’ve met because of it.”
Dylan: You know- you kind of have this ability to, for the most part, kind of fly under the radar, you don’t have to talk about this big issue in your life. What gives you the confidence to still go out there and talk about it to so many people?
Jenna: I’ve never had a problem talking to people- I’ve always been extroverted. For me, it’s really turned into the best part of this disease. The whole thing sucks. Okay? There’s not a good part of having MS. Zero stars. Do not recommend. The one thing that has been awesome because of it has been the community. The people that I’ve met because of it. The people that I’ve connected with. And that’s all come from sharing. Sharing my experiences and being open about it.
Like I said, there’s a lot of things that suck about this. But it sucks a lot more if you’re all alone. If you feel like you’re the only one.
Dylan: Yeah. I think it’s something that I’ve found with all kinds of stories.
Jenna: Right? Because no matter what we’re all going through something. Whether it’s motherhood, taking care of an ailing parent, epilepsy, stress at your job- everyone is struggling with something. Mental health, physical health- life isn’t a Hallmark movie.
I hope I don’t come off as like- complaining.
Dylan: You don’t. I feel like if you have any kind of chronic physical illness, you can kind of relate to people no matter what their physical challenges are. Even though you’re going through a really different battle.
I was kind of exploring with my diagnosis of epilepsy which honestly took me like 18 years- that’s how long I didn’t want to talk about it.
Jenna: I mean- I don’t blame you.
Dylan: And when I finally did- I have a BFA in Performing Arts, and I wrote a one-woman show called ‘Me, and van Gogh, and God’, and it was all about- kind of like you were talking about- those connections that we make. And kind of like- going back in history and making these connections. And you’re right- it sucks; they’re not things that you want other people to have.
Jenna: Yeah- it’s not a fun club to be a part of. But it’s a lot less fun when you’re all by yourself.
Dylan: [laughs] Yeah. It’s a lot easier when you feel connected to other people- especially when you have strong people to look at, whether in history or advocates who are putting themselves out in the world like you and sharing their story.
Jenna: Aw… thank you. I mean, there are thousands of people out there who deserve awards. I’m just grateful for the opportunity, and honestly for the privilege- because you can lose your voice with MS! And as the day goes on, my words don’t come out as clearly. That may be something you experience as well.
Dylan: Yes. I tell my mom and my husband constantly that when I pause, cause I’m also very particular about my words, it’s cause I’m waiting for the words to come.
“We should all be our own best advocate- especially in healthcare.”
Jenna: So, it’s making those adjustments, and talking about those things openly. My hope is that it breeds some more understanding. I know not everyone’s as comfortable as I am with putting themselves out there, being vulnerable, and talking about these things.
Being that MS is so different for everyone, I am the CEO of my own healthcare. I have to be. And truly, I think we all should be. We should all be our own best advocate- especially in healthcare. Especially women and other minorities. But I don’t have a choice. It’s not like, “Oh you have this and here’s the medicine and this will cure you.”
Dylan: I’m glad you said that. Because sometimes you won’t have a diagnosis, or even if you do have a diagnosis, you’ll go places and doctors will just kind of shrug their shoulders. And you have to keep fighting and find the right person. You have to find people who really take an interest in what you’re saying.
Jenna: Absolutely. Because they’re supposed to be your partner in healthcare. We often defer to the doctor because they’re the expert, but you have to be the expert on your own body. Which is why you have to be mindful and take steps to do self care. I know it seems very buzz wordy now.
Dylan: You’re absolutely right. If you go the doctor and the doctor says, “You need to try and maintain your stress” or “Do more exercise” and you just disregard everything that they say, and those are pretty basic things, especially as you start to get older.
Jenna: Right! Drink a little bit more water! You have to figure out what works best for you. You don’t have to be speaking at the state house to be an advocate. You can just be an advocate for yourself.
Dylan: So what 3 things would you say to somebody who just got a diagnosis of MS?
Jenna: That’s a really good question. I would say #1, you gotta feel those feelings, and they’re gonna suck. Because if you try to just power through and push it off, you’re gonna pay for it in the long run. And I know that from personal experience of trying to pretend everything was fine.
#2 would probably be finding a therapist, if you don’t already have one. A good support system is critical. You need to have someone that you can just blurt out all of your life problems to. Your life might not change immediately, but your life is going to change.
And then #3, check out the MS Society Navigator program. I had no idea how many resources and programs they had for people with MS all over the country. You may not need it right now, but be sure to save it on your browser for when you’re ready. Finding that community that can support you and knowing what’s available is a great resource.
“If you don’t allow yourself to change and adjust your expectations, chronic illness or not, you’re always going to be disappointed with what’s going on.”
Jenna: None of it’s easy. It’s a process. You can still find joy in your day. Your life is going to look completely different. But let’s be honest. My life vision at 15 for myself was not like a vision that was going to happen. Who’s life vision is the same that is was 10 years ago even?
Dylan: You always see that quote “Be the role model you needed when you were younger.” And I always think, “Man. If I was being the person that I wanted to be when I was younger- that person was really not that cool.” I’m working towards something much more inspiring now.
Jenna: You know, if you don’t allow yourself to change and adjust your expectations, chronic illness or not, you’re always going to be disappointed with what’s going on. If you’re not happy with how you feel at the end of the day, then let it go and try better tomorrow, but if every day you feel like you’re not enough, is that the life you want to live?
Dylan: There’s a John Updike quote that says, “Every day we wake altered, and the person we were yesterday is dead.”
Jenna: I love that quote.
You can learn more about Jenna by following her on Instagram (@thejennagreen) or checking out her blog (Full of Grace & Grit)
Learn more about Multiple Sclerosis by visiting the National Multiple Sclerosis Society here.
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