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Nobody seems to understand.

For context, I am a 20 year old who just got diagnosed with MS this year. I am already so tired of it, that I don't know how I'm supposed to live with this my whole life. This is really bad. I hate having this. Also I have enough problems as it is with mental illnesses. I feel like it's just so unfair. I feel like nobody understands me. People make bad suggestions and give bad advice because they have never dealt with this. They have no idea what it feels like. And no I can't just accept it. I don't want to! I simply don't want to! This is bad and it's unfair and I feel like I'm allowed to think this way. Can maybe anyone here help me through this a little?Through messages I mean?

  1. ,
    As I mentioned previously, I am so glad you found this site.
    You've found a community that truly understands what you are going through.
    A recent diagnosis can certainly be overwhelming and challenging
    (physically, mentally and emotionally).
    Understandably, your head must be spinning right now. Take time to digest this all and ask questions.
    I thought I'd share one of our patient leader's story on being diagnosed at 20: https://multiplesclerosis.net/living-with-ms/diagnosed-young-age

    Having a good support system can be so important. (This community for one!)

    It's important to note that most people not affected by MS don't understand MS. (Like the saying goes "You don't get it till you get it".) Perhaps you can share this site https://multiplesclerosis.net/ (or articles) with those around you to give them a better understanding of what you are going through.

    I do hope others in this community will join in with their words of wisdom and support. In the meantime, please know you are not alone. We are here for you, reach out anytime.
    Many hugs, Doreen (Team Member)

    1. I hate to hear this. You said one thing right, this isn't fair. You have every right to feel the way you do so know that it’s completely understandable that you’re feeling angry and exhausted. It's hard to feel understood when no one you know has dealt with the same condition you are facing. Let alone their advice (especially unsolicited advice) doesn't make matters any better. You don’t have to accept it right now and it’s not something you have to just get over. If you want to talk, vent, or just have someone who listens and gets it, we're always here for you! I know Doreen shared a few links for you to check out, but I also just wanted to plug in a link to our mental health hub- https://multiplesclerosis.net/coping-ms-mental-health. I know things are tough right now, but there are people here who have been exactly where you are. You’re never alone in this, even when it feels like it. So please let us know how we can support you through this. Stay encouraged 🧡 -Latoya (Team Member)

      1. thank you so much for your words. It means so much to hear this and feel like someone understands ❤️

    2. I'm so glad that you found this page and had the courage to share your honest feelings. Our community is one that can certainly relate to the range of emotions that a diagnosis of MS can trigger. I see that Latoya and Doreen shared some great thoughts and resources with you, I simply just wanted to also remind you that while you feel very much alone in your day to day world, often surrounded by people who don't understand the reality of living with this diagnosis, you are also surrounded by a community of people who get it here on this page. We can't take away the challenges of MS - although we sure would love a cure! - but we can make sure that we are not doing them alone. We walk alongside one another through the day to day and support, encourage and listen. We're here for you and each other!
      Best
      Alene, Moderator

      1. It will always be something you'll have to get used to, this is an ever changing disease. BUT, you will have better days! I was diagnosed at 24 the day after my new husband and I left for our honeymoon. Talk about a whirlwind! But as time goes on, you will learn how to get through the tough days and appreciate the decent ones. Just remember to live the best life you can and no matter how dismal it may seem now, you can do this!! Its been 31 years now and I can say that the more stressful situations you avoid in life the better you will be in your future! I wish that I would have had someone tell me that years ago!

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