Thinking about the Future
One of the things that some people who we interviewed talked about in relation to their MS is the impact that it had on how they thought about their future. People worried about how their life might differ from what they had envisioned, and whether they have prepared for this possible future. They wondered what the future would be like for them physically and cognitively, how advances in science might be able to help them, and how relationships with other people might change.
Uncertainty
Nearly all the people we interviewed talked about how MS led to a sense of uncertainty and lack of predictability about how things might change over time, including future relapses, whether their medications would continue to work, and whether specific symptoms such as cognitive impairments or vision loss would develop that might lead to decreased independence.
David R. wonders if he will regain some physical abilities.
David R. wonders if he will regain some physical abilities.
I mean, the other thing I've never really gotten any answers on before I started physical therapy is whether if you lose, like, strength, or if you lose neurological capability, whether or not that's something that can be restored. I've never really gotten a straight answer out of anyone, which is that, you know, I was-- I was bad for a number of years where I wasn't engaging in physical therapy or whatever. But what I don't know is whether by not being as conscientious about physical conditioning and things like that, whether I lost capability that can't be restored.
Jason tries to get the most out of life while he’s young.
Jason tries to get the most out of life while he’s young.
I've kind of accepted the fact that I am likely to die young, which is fine. I am living my life in a way where if I die when I'm 68 I know I will have lived the life I want to live. That's really the biggest thing that worries me, is that I have two chronic diseases, so my life expectancy is probably shorter than average. So how do I get the most out of my-- the time I have? And that's also why 2020 has been the perfect time to just push myself-- like, kill myself for a career, because I haven't really had the opportunity to safely do the things that I want to do anyway. So, I might as well get ahead at work and make more money so that when I can do those things, I have the money to spend on whatever I want.
Dani tries to enjoy what she is doing now.
Dani tries to enjoy what she is doing now.
Because before a lot of my life was focused on, I'm going to work really hard now so that I can have a better future, an easier future. So, the future is now. It's every second. And you have to live this one beautiful life you're given, because you don't know how long you're going to have this current state of your life. This life I'm in, my MS life, is completely different to before. And I never would have imagined that my life would change this drastically. So, it's very important that I enjoy whatever time I'm in right now of just having headaches and leg pain and fatigue. Because I don't know if a year from now, it's going to be wheelchair, headache, leg pain, whatever. So, I don't hold on to things very long. I used to joke that it's because my memory's not great. But I just don't have the energy to just worry and be angry about things.
Raven decided that she needed to embrace the new path that MS created.
Raven decided that she needed to embrace the new path that MS created.
I guess for whatever it’s worth, I would not embrace it as this tragic moment where my life was over. Again, I would embrace it as a step towards something, direction that I didn’t think I would be taking, some path that I did not think that was mine. And let’s then bend this path toward me, as opposed to trying to stay on the path that I was on and keeping up and trying to keep up with a life that is no longer available to me. That was the life that I had considered before I knew that I had multiple sclerosis. Now it’s time for me to embrace a new path, a new life that's shaped by this new truth, because truth is what it is.
The uncertainty and unpredictability associated with MS made thinking about the future “terrifying” for Bianca and Tiffany, and “depressing” for Debra C.
Maureen expresses concern over her future with MS.
Maureen expresses concern over her future with MS.
What if I get to the point that I get so bad? And then I say, I don’t, if I get that bad, I don’t want to be here. And I think that’s okay. You know, I, if you lived your life to the potential that you could live your life, and you get to a point where you just don’t like it anymore, I really think you should be able to have assisted suicide. Is that, that might be something you cut out of my, but I can’t see, like because I’m a person who wants to keep doing things and not just sit, I think I would have a very hard time.
People we interview sometimes dealt with uncertainty by trying to understand their bodies and symptoms. After her diagnosis, Kelsey learned about MS and her own body to understand “what [she] should be looking for, trying to figure out what was a concerning symptom that meant something was very wrong versus… just being a human in a body.” Julia pushed herself to stay active so that she wouldn’t experience “deconditioning” and lose her current physical abilities. As he aged, Fred tried to weigh potential worsening of his MS symptoms against other things that might disrupt his health, such as accidents.
Jean focuses on what she can still do rather than what she’s lost.
Jean focuses on what she can still do rather than what she’s lost.
You have to look at other ways of living your life and just having to come to accepting it, because there isn’t-- unless you can exercise, there isn't a whole lot that you can do to prevent further progression of it besides medication, maybe. But I don't know. I just have to look at the positive of what I can still do versus what I've lost. And I know I'm one of the luckier ones, I would say, at this point, because I know that there's a lot of people a lot worse off with MS than what I have with the symptoms. But I don't know. It's just the fact that positive is just trying to find other ways of doing things or finding other activities that you can still do.
Belief in Science and Medical Advances
People felt differently about whether the potential for medical advances and a possible cure for MS in their lifetimes made them optimistic and hopeful about the future.
Kim is optimistic about the ability of medical treatments to control his MS.
Kim is optimistic about the ability of medical treatments to control his MS.
I wish that from the start that I had known that if you have to be diagnosed with the neurodegenerative disorder, MS is a good one to get. And if you have to pick a good time in history to be diagnosed with that disease, now is a good time. There are a lot of really effective drugs that are disease-modifying that literally change the trajectory of MS that we didn't have 20 years ago, and they give people a normal life. And I didn't really know that at the time, and so there was a lot of panic. And that's why I think my first appointment with the MS specialist was so useful. I heard that message exactly, that this disease used to be a disabling death sentence, and it is no longer that. And if I had known that from the start, it probably would have saved me some panic.
Marquita hopes that medication advances will continue to help her.
Marquita hopes that medication advances will continue to help her.
I have this thought that, or this fear, that eventually, I'm going to be JC Virus positive. And that I'm going to get taken off Tysabri, because I've been on it for so long. And usually, people don't stay on it for the amount of time that I've been on it. But I'm hopeful, fingers crossed, that things will work out, and that I'll be able to continue the medication, that I will stay as healthy, at least as healthy as I am now. That possibly, in the future, new things will come about, that I will be the old me. I really do want to work. I really do want to be a dental assistant.
The Role of Caregivers and Supportive Others
When thinking about their future with MS, people considered both who might care for them and who relied on them. Karen was “very, very grateful and very optimistic” about her future with MS because she knew her family would help her if her symptoms worsened. In contrast, Debbie worried about how she would take care of herself and whether she would still be able to live independently. Liz and Susan both worried about how potential diminishing mobility would affect their ability to take care of their own kids.
Mercedes feels fortunate to have a supportive husband to care for her.
Mercedes feels fortunate to have a supportive husband to care for her.
Well, I'm fortunate to have a husband. And so, you know he's been with me throughout this process. And he's done some reading on his own. And he understands what MS is and how it manifests itself differently. And you can't really predict per se. And so just to have him and knowing that he would be willing to care for me if need be moving forward in the future is-- is a blessing. So I think, for the most part, that everyone's receptive to me having what I have. And so, if they needed to step in at any time, they would.
Rhonda worries that she won’t have someone to take care of her.
Rhonda worries that she won’t have someone to take care of her.
I worry about that day I can't take care of myself at all. And I know I'm going to go into a nursing home. I know it's unavoidable unless there's something that's going to remyelinate in the future that's going to allow me to regain the use of my arms fully because it's a little bit each time. My fear is if I can get someone in the home to help me, but I don't qualify for that, and I can't afford to pay for that, so I would end up in a nursing home.