Interacting with Other People with MS

It was kind of odd. I took care of a lady, when I was first diagnosed, that was severely-- had a severe case of MS.  She was in her 30s, and she was in the nursing home. And so it was kind of a weird scenario because I was going through my first diagnosis. And I was taking care of her, and she passed, maybe, a year after that or so. But she was severe-- severe, so I could watch-- she was very non-communicative. She couldn't speak. So I could watch her expression, what she was going through and sort of understand, because she was severe-- had severe case of MS, and I was just diagnosed.  So it was interesting to balance that and at first, it was kind of hard because it's like-- oh, my god. This is like me, right? Like a [INAUDIBLE] but I'm not going to be quite this disabled. She was pretty. She was younger than me but extremely disabled. You know, I could understand what she was going through. I couldn't put myself exactly in her shoes, because I have not ever been as severe as she was, because she was pretty severe. 

And in terms of social, it's kind of funny that now I just gravitate to individuals who have MS, who can understand if I feel fatigued or if I can't remember things.  I have some friends at work, who I did tell. And they, sort of, understand, but there's times when I would say, “I'm sorry, I can't go out, or I can't do this.” And they would say, “But you never want to go out!” And so now, in terms of socializing, I prefer only socializing with other individuals who have multiple sclerosis, who can understand when I say, "I'm sorry, I can't go."  
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I remember one of my MS friends invited me for luncheon for one of those clubs, the Rotary Club. And I woke up, and I just wasn't feeling well. I was just, oh my god, I want to go to this. But I can't. I mean, I just-- I was so tired. And so, I sent her a text, and I said, “I'm sorry. I'm not feeling well.” And she goes, “OK, no, I understand.” And so immediately, I said, see, she understood. But if I would have told someone else, they would say, why don't you just tell me the truth? You don't want to go, or you don't want to do a fundraiser, you want to do--  So, for me now, I'm gravitating more-- obviously, family and then long-term friends. But otherwise, new people-- I'm, kind of, just limiting to them who also have MS, who can understand if something comes up, that I'm doing it because of my illness, that I can't be there. It's not because that's another excuse. 

The people that I run with, when I was training for the MS team, all the other runners were either people with MS or people with direct family members with MS.  So that was nice because it was just like this little community of people who had been impacted by this disease in some form or another. And we never talk-- we didn't really talk about what our experiences with MS were. We just kind of shot the shit and ran together, and it was nice to have like a community of MS people with MS not being the main focus.

Two of my colleagues, they had MS. And since then, and that actually helped me to understand because they had MS much ahead in time. And one was from UK another was one for, she was from the US, I think.  I could start correlating a lot of things what I had gone through, and I could understand. And I used to talk a lot with them to understand what MS was. And we used to exchange a lot of information. That helped me.

I think one of the things actually that helped me, I volunteered with the National MS Society to deliver Christmas gifts that first year to people residing in nursing homes in my area. And it just really opened my eyes to how MS can affect everybody differently. So, there were people of all different ages. I think there was someone that was younger than myself who resided in a nursing home and was confined to a wheelchair.  And you know, there were older individuals who-- everybody has a different experience, whether they're bedridden. It went from someone who was bedridden on feeding tubes and so forth to someone who physically was not so much affected as they were cognitively and mentally. So, I just got to see and talk with people of different ages and different abilities and see how it just really affected everybody differently. So, I was able to see that maybe it didn't need to be as bad as [NAME], but there could be other difficulties and things to worry about as well. 
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And I know that I have gained so much information from other people across the board, whether, you know, like I said, visiting the people in the nursing house that had MS-- that was big. That was a huge thing to just sit and talk with everybody to get their perspective, because they had all been living with it for so many years. 

I know a lot of the older people that have MS that I have been around, especially during infusions, have not been very welcoming. They're kind of in their own little bracket, in their own little bubble, and they’re-- they’re-- they've had it for a long time, or they were diagnosed late, and so their symptoms are significantly worse than mine. So, their symptoms are worse based on either how long they've had it or late diagnoses. And I-- my symptoms are very minimal, and they prefer to talk to each other than-- like, you know, I'm just kind of there. And I kind of get scowl looks, because, I mean-- I under-- I can get it, because it's like, it stinks for them, especially if they had a late diagnosis, that all this can have been prevented, and I'm in, or, you know, they remember being-, having this many symptoms, and look where they are. So, I just don't get a very warm, fuzzy welcome from people in a different age bracket with MS. So, and-- which is OK, which is fine, I mean that's how they feel, and that's fine. They're justified in their feelings. So, with the person that I met in my age bracket, it was a lot more calm, and we were able to discuss more things, and how long, and he actually had the same neurologist, and you know, it was more welcoming. Because we were both, you know-- like he had just gotten diagnosed like two years prior to my diagnosis-- so it was more of a similarity. 

So, I went to the first meeting. I had a good time. This is the group where it was only 60s and 70s and 80s people, all with years and years of MS experience, and just talking about how you were doing that day, and perhaps talking about what you were doing for helping to go to the bathroom, and just talking in very explicit terms about what we're going through, which was a great thing. Because perhaps only in that group, you can share that way. And it was great. And it was good to see myself doing that in several years. I heard that younger MS-ers tend to go to one meeting, and they don't go back. There's this feeling of that's going to be me soon. Or that's how I feel, and you don't want to see that. I can understand that. But I mean, if you look at it from the most basic-- at the most basic level, they are still breathing. Right? And they're still showing up, at the most basic level. But that is just scratching the surface. I mean, you really get a ton of that understanding, of people who get it, everything that you're going through and more. And whatever you say, it's not the first time they heard it. It's not the first time they heard it. And you go through challenges, and you go through wins. And yes, sometimes the win is that they showed up.  

And I think, I mean, I can't remember when, but at some point in the process, I had my MS doctor-- once I finally got the MS diagnosis, he was like, "You should seek out a peer support group. This could be useful to you." And he very clearly said, "The medications available for MS now are profoundly different than ones that were available a decade or two decades ago. So, I want to make sure you go to a support group of young people who recently got diagnosed because if you go to a just standard MS support group, you're going to get a very pessimistic idea of what your life is going to look like." And he very clearly was like, "If you see people who have had MS for 20 years, they are all going to be in wheelchairs or at least have some limited mobility. And their disease is going to have a huge impact on their quality of life. And this is not necessarily your future. And I don't want you to assume that it will be your future.

You don't want to get caught in that cycle of ruminating and constantly talking negatively about things and reminiscing about things in a negative way. And I think that there's a certain feeling that, when you go to a support group, that's what happens. Everybody talks about their negative experiences, and then we all commiserate and go home feeling worse.
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So, I took over the group, but really, even since well before that, I've pointed that out. And we've really focused more on just doing fun things, and getting speakers in, and stuff, and just not talking-- we just – we just really try to avoid-- it's not that it's not allowed because certainly, it is, and you want to talk about your experiences [um] but because they're real-life experiences. But you don't want to just commiserate about the same things every month and have that just be a very negative experience. So, we've turned it into a very positive thing, where you might do some activities right. Like I said, we have a speaker almost every month kind of thing.

There are so many different groups and platforms, and it really is finding the group and the platform that fit you. There's so many MS groups out there, don't stop at the first one. Make sure to find one that has the level that you're looking for.  I know, for me, personally, I wanted one-- there's one on Ocrevus, which is my specific treatment right before I started. It was nice to speak to people that have been on it, asking questions about what does living immune compromised look like? What actually is an infusion? Questions that I didn't know the answer to. So that was helpful.  I've also found several Facebook groups that are really on the technology, people that are really looking to the new and upcoming treatments. So, it really helps me stay in tune with what's next. I know the MS Society has a Facebook group that's there for a lot of the people asking questions. They have their navigator team that's there to support and provide answers. So, it's really just thinking about what you want out of the social media connection, and there's a group for you, and just finding the right one that fits your needs. 

It was really nice. I had a lot of friends and family that came out. And I had pictures and everything. And it was nice. We walked around. But then when you're looking at different people out there-- like I was saying, some of them were in wheelchairs, some of them were in walkers, some of them were walking differently. So, it just-- but they had a lot of people out there to cheer you on. They gave out necklaces and everything. My family was talking about how many goods they got. They got all these snacks and stuff. And they were like, “They gave out so much stuff!” They gave out key chains and all-- they gave out a lot of stuff. It was really nice. But just looking around and seeing everybody really fighting through this, it really opens your eyes. And like, OK, just really take this seriously, Rochelle. Take care of yourself, make sure you make all your appointments, and make sure you check up on everything. Just makes you think, you know, open your eyes and really take it seriously.