New to the Group!: Hi, I'm Ali. I'm a 21 year... - MS Society

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New to the Group!

lethal_lilacs profile image
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Hi, I'm Ali. I'm a 21 year old woman with MS. I had my first flare & was diagnosed when I was 19 (in 2018). Since then I've had another flare (which I am currently getting treatment for) & am looking to make some friends, listen to others' stories, & perhaps learn new ways to cope with this condition. Because I am so young its been extremely difficult for me. My family & friends are aware but some of them don't always understand the severity of it. It can be very frustrating in my daily life. Especially because I was so strong & productive before my first flare. I used to be in much better physical (as well as mental) shape. Being so young makes it harder for people to see & understand my invisible attacker. Some days I appear completely normal then other days I have to use the handicapped scooter in the grocery store. I'm too young & haven't worked enough to qualify for SS disability benefits & the other form of disability tells me I'd make more working a minimum wage job than they would be able to give me. Lots of decisions to make & work to do. Hopefully this group will be helpful! Thanks for reading this!

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lethal_lilacs
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ashalmi profile image
ashalmi

Hi My Name is Amber and I'm 30 I really understand about people not understanding what your going through because you are young. I have had trouble mentally and physically and am looking for guidance as well. My friends and family do not know how hard daily life has gotten.

Cats714 profile image
Cats714

Hi Ali, I’m Dahlia, i got diagnosed in 2017. I can’t even imagine what you’re going through. I do understand people not being able to see and understand. I had started a new job as I was in the middle of getting a diagnosis, and I kept getting looks because I was missing work so soon. And then one day one of my coworkers wanted to switch shifts and the manager told her I couldn’t. So she went and asked me why, I told her, and she says to me “wow, but you don’t look sick,” that was frustrating. Having people think you’re lying, telling you that you don’t look sick, yet you feel like you’re carrying the world on your shoulders and you don’t know how to make it better. I’m, unfortunately, still pretty new to this, so I myself am still trying to live with this. Some days are bad, most are good. Especially when it comes to my mental health, it’s taken a toll on me and my relationships with the people around me. It’s definitely not easy to control it, but I try my best to not let MS get the best of me. All I can say is to take it one day at a time, and do what makes YOU happy and feel better, because at the end, we’re the ones who feel and deal with MS, no one else. I hope you’re doing better.

Sunflower0 profile image
Sunflower0

Hi I’m Bronwen. I am also 21 and was diagnosed with MS around 5/6 months ago. I too, like you, was very physically fit before my first flare up and despite having mental health struggles before, find it really difficult to cope since being diagnosed. I had not been well since I was about 19, after I had shingles I never felt the same and went almost two years with doctors telling me that there is nothing wrong with me. I completely sympathise with you and understand how difficult it is when people don’t understand just how unwell you are. I am in constant pain and although I love my family I feel like they don’t understand just how bad I feel or that people think I’m just being dramatic - as like you sometimes the pain is bearable and other times I find it very difficult to mobilise / do much. I’m sorry that you are struggling, sending you lots of love & gentle hugs. B xxxx

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