- More walking, balance, and coordination problems
- More cognitive and visual symptoms
- More frequent relapses with poorer recovery
- Earlier disability onset
RELATED: Why Do Black Patients Fare Worse When MS Strikes?
How MS affects Hines’ mental health
On an average day, Hines has to navigate both the physical symptoms of MS and the toll it plays on her mental health.
“…They really go hand in hand…You wake up every day and kind of have to do a body check to see where your symptoms are at that day…Am I able to move my toes? Am I able to move my legs up? How’s my vision today? Do I feel like I have balance? What’s my pain level? All those things happen before I even get out of bed,” the filmmaker shares.
The up-and-down roller coaster has also caused Hines to battle personal gaslighting.
“To not know what your day has in store for you or the fact that your day could start off a little stronger and then deteriorate really quickly to where you are in bed for the rest of the day or find yourself on the floor in pain– it really affects your mental health as well because you feel as if you’ve lost whatever control that you think you might have had over your body,” she notes. “There’s so much that I want to do in a day that MS doesn’t allow me to and so when those symptoms start to flare up and I’m not able to do the things that I want to do, it absolutely then turns into a domino effect and just how I feel about myself that either I’m weak or I’m not strong enough.”
How Hines overcomes mental health challenges
Although she may find it challenging on some days, Hines has developed some tools that help her overcome those challenging days:
- Giving herself grace: “I always just try to remind myself that my best each day is more than enough and to give myself grace. So if it turns out that the day that I had planned doesn’t happen and it turns into a day that I am just in bed that’s OK.”
- Not pressuring herself: Hines reminds herself to not put pressure on herself to be who she was before she had MS. “I’m not that person anymore and that doesn’t have to be a bad thing. It’s just embracing who I am now, which is someone that is more intentional. I’m much kinder. I listen more. I listen to my body. I extend grace to others.”
- Finding a safe space: Hines advises finding a safe space. This can be your friends, family, or a therapist. “It’s OK to be really sad sometimes. It’s OK to be angry. “It’s OK to have all of those feelings. I just always urge anyone that I talk [to] with MS [to] try not to stay there for too long.”
“..It takes a certain type of strong to be living and thriving with this disease and so I’m honored and humbled and proud to be a part of this community. My family and God help me so much with being able to greet each day with some positivity and I do believe that in my lifetime I will be able to say that I used to have MS and I really hold on to that,’ Hines says.
RELATED: Managing Symptoms of MS: A Guide for Patients and Caregivers
Tips for those who are living with MS or have a family member living with MS
- Find a support system: “I’m so grateful to say that I have such an amazing support system when it comes to everything that I deal with on a daily basis. They’re always there to listen, and sometimes I think when you’re living with MS you just need that validation of someone to tell you that they see you and they hear what it is that you’re going through.”
- Find a way to support your loved one living with MS: “Just being able to listen– offering anything to make their day a little bit easier and make their load a little bit lighter–whether offering to run an errand for them [or] sending them a little trinket in the mail to let them know you’re thinking of them– supporting them and taking them to doctor’s appointments.”
- Find ways to manage your pain: “I’m always trying to find ways to ease my pain and make my day a little bit lighter so whether that’s going to get a massage, going to a movie, sitting and napping. Whatever it is to bring my stress level down and just provide me a little bit of relief, I’m always for it and I urge everyone to try to find that for themselves as well.”