When You Can Survive But Not Thrive
For many people that live with a chronic illness like Multiple Sclerosis, everyday life can be like a never-ending limbo. A purgatory where they are caught between not being disabled enough to be on disability but also not well enough to do anything more than try to simply survive. They feel like the walking dead, zombies that are going through the motions They’re able to maintain their existence but lack the ability to do much more than that. Symptoms like pain, fatigue, and cognitive dysfunction are worsened by the everyday activities needed for survival, leading to very few opportunities to actually thrive.
Challenges in daily life
Even without a chronic illness getting in the way, life can be challenging. Maintaining a job, paying bills, buying groceries, planning and creating meals, etc. Living isn’t easy for many people. When you add in an illness like MS, it becomes increasingly more difficult. Even simply working for eight-plus hours a day can become an enormous struggle. I’ve mentioned the idea of the “MS Tax”, where we pay for any activity we partake in, that can lead to a never-ending cycle of working and not much else. Fatigue, in particular, is a massive issue for people with MS. We like to say that a good way of explaining it is to think that someone with MS takes five times the amount of energy to do something than it would if they didn’t have the disease. So they may get through a full workday, but they have little left in the tank to do anything else. Fatigue then affects other symptoms, suddenly we have more pain, we are less steady on our feet, and our brains seemingly turn to mush due to brain fog.
More to life than just work
There are many people with MS who get by in life. They’re still able to go to work, they may even look great doing it, they may even still excel in it. However, that becomes all they do. They manage to get through work each day, only to have their bodies begin to malfunction afterward. They are lucky if they can manage all of the other basic tasks of life, let alone anything else. Simply surviving becomes a massive challenge with little to no hope for anything more. Forget dating, hobbies, or any sort of worthwhile/pleasurable activity, it simply isn’t possible. It’s no wonder that depression rates are so incredibly high for those with MS. It’s not hard to see how people can suddenly start to question their existence.
Stuck in limbo: not sick enough
I feel like I talk to so many people that are stuck in this limbo state. They put up a tremendous fight to keep working and to not be considered “disabled”. There are also many that shouldn’t be working, have had their doctors tell them so, but they’ve been turned away by the disability process. Judged as sick, but not sick enough to receive help. Others actually receive help, but not near enough. All of these folks are left in a constant struggle, every single day, to survive. I’ve absolutely been there. I fought hard to maintain my job until my body simply wouldn’t allow it. During that time, I was a shell of a man and lived in this zombie state, where I would manage to work but little else. I’d come home, only to lay on the couch until I was able to find some food, then I’d eat, and often be right back in bed to begin the process again the next morning.
Aside from not having much of a life, living in limbo like that can even further affect your future. Eventually, when all you can do is barely work, you begin to exercise less, you eat worse, you have less social contact, you take as many shortcuts through life as you can. Those shortcuts inevitably have consequences to your health, making you that much more susceptible to disease progression. Aside from that, quality of life goes out the window when you live like this, you struggle to exist and begin to wonder why. It’s not a pleasant life. Many people are living like this though, as “MS Zombies”, shambling through their lives.
What friends and loved ones can do to help
I don’t have a lot of solutions to this, but I know it needs to be recognized. Even those who have MS and aren’t in wheelchairs or using other mobility aids can still have a stressful life. As always, just because they “look good”, doesn’t mean they are. If you want to help someone like this, particularly if you are a friend or loved one, help them by taking on some of those everyday tasks. Picking up some items from a grocery store for them, make them a meal, help with laundry, help with any sort of simple and everyday task can be a massive help. Also, try to bring some joy into their lives, any way you can, because it can become hard to find that when you are just surviving and not thriving.
Thanks so much for reading and always feel free to share, the more we share things like this and educate people, the better chance we have at helping each other!
Does your employer provide workplace accommodations due to your MS?