Health and wellness touch everyone’s life differently. These are some people’s stories.
Chronic conditions like multiple sclerosis (MS) can change your life in a multitude of ways — and sometimes, those changes are difficult for others to understand. Regardless of how close you are and how much you matter to each other, only you know what’s going on inside your own body.
We reached out to our Living with Multiple Sclerosis community on Facebook to get an understanding of the impact that living with MS can have on a person’s ability to connect with other people — and to learn how our community has dealt with these new dynamics. We asked: How has MS impacted your social life?
These were their responses:
“It has totally destroyed mine! I no longer have the confidence to have a social life. It’s too exhausting always worrying about how far I have to walk, how close the bathroom is, how noticeable is my gait, etc., etc. Much easier to stay home.”
— Nancy D.
“I still do plenty, but have learned to recognize when I have about five or so minutes of energy left. I live in a pretty small community, so I am able to drive myself home from just about anywhere when I feel that ‘wall’ closing in on me. My friends are excellent! They do not pass judgement, they just smile and say ‘bye.’ They will text later to see that I got home all right. Then will call the next day to verify that I am OK.”
— Amy R.
“I think my friends and family have been very, very understanding and supportive, and it has only inspired me to live a better life. They understand when I am not able to attend events even when I have to cancel last minute, they keep asking me if I need a cab to get somewhere, and even walk at my pace so that I don’t get left behind. They also take care of me emotionally. I moved to a new country three months ago, and I have been very lucky to have met these amazing people. I feel nothing less than blessed.” — Vanya, L.
“I can choose and plan — make myself ignore, or ask others to do, stuff so I can go to events. Balance it with what needs (does it really?) doing and what I want to do. I can still work, [which is] exhausting but means I can afford a cleaner. Worth every penny, and as I drink very little unless at a party, it’s a worthy payoff.”
— Sue B.
“Mostly energy level goes from hero to zero and ruins a day of joy, in the house or out. People stop calling or visiting because you aren’t fast enough or I guess fun enough for them any longer. If you don’t have MS it is hard to understand that we can look the same but feel so different inside.”
— Margaret M.
“I have a busy social life. Before MS and after. Difference for me is I have to plan whether I can sit and what is the bathroom situation. I also need to know, when I feel that sensory overload I get now, that I can step away and go home. Sounds like a lot, but it’s getting to be second nature, and thanks to the internet, I can research before I go.”
— Ann W.
“I now rethink all of my actions and decisions to double-check my safety as well as my children.”
— Soraya L.
“I am in a wheelchair most of the time. Mainly because l don’t know when l might fall. I don’t like to be a burden to anyone, so l stay home the majority if the time. But my infusions are a big help.”
— Nadine R.
“I try to schedule my time/days/sleep so I don’t miss the things I want to do. It takes some planning, but I have MS — MS doesn’t have me!”
— Diana C.