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AS can cause us to cancel plans, sit out on participating in activities, and miss out on things we might otherwise not have. This can strain friendships, relationships, and loving ourselves.

How do you deal with the feeling of FOMO?

  1. Im in my mid 20s and suffer from AS symptoms since i was a teenager. FOMO has made me do stuff out of my body's limit and worsen my initial kind of OK state. For the past year i tried to listen to my body and take it slow and off course it has been impossible for me to keep up with my peers when it comes to traveling, working, studying and living the supposed thriving life of young adults. I've tried therapy and partially it helps control the self-pity but I still get jealous at people living their life without worrying about flare ups, three month check ups, and taking humira shots.

    1. Thank you for your kind words i hope you are doing good, im actually feeling kind of ok and thinking of going at a camping trip with some friends.

    2. Very astute! I'm amazed at your self knowledge. Keep taking care of yourself!

  2. Oh I am the party. No party without Rick. So when Rick is not there there ain't no party at all, ever!!

    1. We need to rent our services. Dull party expected? Call the anklyo team. We liven every party with shouts, screams, and that is just getting out of the chair.

    2. Bwahahahaha, thanks for my morning laugh! Priceless!

  3. I’m 20 years old, and have been suffering with my AS since I was 16,
    FOMO has been massive in my life for fear of not being a “normal teen” and for a really long time it effected my mental health, or I’d force myself to do things and dealt with the flare that came after,
    I had a lot of fear moving to uni last year as I know that part of being a fresher meant a million nights out and functioning as best as I could. To be honest it does still hurt and the FOMO sometimes does make it feel like I’m alone, but I got very very lucky in the fact that my uni friends have been so understanding of me, they change plans if they’re going out so I can have drinks with them first where we live if I can’t go out, or they come out with me and when I can feel it becoming too much they leave early to come home with me and make it a party back at home where I feel safer.
    Surrounding myself with people who recognise the condition even if they can’t understand it has been massive for my fear of not living, because they let me live, just in a different way to them and it’s been massively helpful.

    When I am struggling and the FOMO is taking over, I tend to try and take stock, look at the things I enjoy, distract myself with things if I’m alone and just try my hardest to remember that looking after myself in the situations where it might not be possible for me to go out, means on the good days without a flare I can more confidently do those things that I feel I’m missing.

    I’m incredibly grateful to my friends, family and boyfriend who are all extremely supportive and encourage me not to push it so I don’t feel quite as bad, and I massively appreciate the changes they make to include me in things when I’m not okay.
    I’ve found it really helps to try and recognise your own good days and bad days, and make plans, even last minute in those good days just so you can do something with less fear and enjoy what happens on those days so when the FOMO sets in you can look back on them.

    1. can I just say that you are a seriously wise 20-year-old? Not that 20-year-olds aren't wise, but when I was your age at Uni, I would never have such self-awareness, gratitude, and wisdom. (My AS kicked in last year of uni, and it started with my I was largely spared these sacrifices and the balance you so gracefully are managing).

      I think this disease somehow sort of pushes you to grow in ways that maybe naturally come later. I am so glad you recognize and embrace your good days and that your crew is supportive and kind to you. That's amazing and you deserve it.

    2. thank you so much ❤️

  4. Honestly, it used to be harder. Around 2017 I would cancel plans A LOT. People I knew called me "the most flaky." This bugged me but it was because I couldn't really articulate to them what was going on with my energy levels, because I really did not get it myself. I felt like if I stayed home, I was BIG TIME missing out. I'd force myself, feel awful, leave early. Waste of time and money. Nowadays, I think, I just listen to my body and embrace the good days. I am grateful that I got through MOST of my 20s partying and having fun. Now, at 36, I'm not trying to party hard all the time, ha. So I appreciate the low-effort hangs that happen more now.

    The best way to get over FOMO is to make your home cozy, to lean into needing rest, to accept it, to have your go-to comfort things/activities/shows, to make your bedroom a sanctuary.

    1. I have made my bedroom my castle! Comfy, comfy and comfy.

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