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Chronic illness support

Hi all I'm in need of some support, I've recently been diagnosed with fibromyalgia as well as having hypermobility. I'm really struggling dealing with the pain and being understood because of my age no one takes me or my pain seriously and my pain management doctor suggested that maybe I had POTS so now I'm trying to deal with that aswell and it's all just so overwhelming. 🙃

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    lunarcat522lunarcat522 Posts: 407 Listening Ear
    Hi @mxllxe_xox I also have hypermobility and struggle with chronic pain and fatigue as well as not being understood due to my age.

    I do private physiotherapy using pilates exercises which somewhat helps but I do struggle with daily things such as heavy lifting and walking up stairs

    I found it's been quite helpful to have badges that I wear just explaining I have a chronic illness so that people might hopefully be a bit more understanding and stop calling me lazy or being confused on me using lifts

    I'm about to apply for DSA for AI note-taking to help me with my studies and I also get laptop accommodation for my exams now

    I'm not sure if any of that is of interest to you but that's just some stuff that helps me
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    ebyrne556ebyrne556 Moderator Posts: 812 Part of The Mix Family
    Hiya @mxllxe_xox welcome to the mix! <3
    I also have chronic pain cuz of long covid and 100 pc it’s really difficult to not get the healthcare professionals as you are right, they don’t take you seriously and I can really have a negative impact on your mental health and confidence. you’ve done the right thing by reaching out to us all here as I’m sure they’ll be other people who have had similar experiences and I think it’s really important to chat to people.

    I’m hearing that you’re looking into POTS recently I found out about the UK website which has appear support group online which might be worth having a look at just to get that connection from other young people going through similar to yourself. Here is the link.

    https://www.potsuk.org/pots-uk-online-peer-support-groups/

    As said above I’d second the cards there’s a card called a jam card which is normally used for people with autism, but you can get just a plain one that says you have a condition on it and it’s helpful to allow you to have an extra minute to think or do something. I’ll put the link on here as well.

    https://www.jamcard.org/

    Thinking of you :)
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    Laura_tigger82Laura_tigger82 Moderator Posts: 5,107 Part of The Furniture
    Oh, @mxllxe_xox - I can relate to your post with my own experiences. I was diagnosed with fibromyalgia in my teenage years and "you are too young" does seem to be an all too common phrase :/

    Your experience is validated here and we can hear the pain you are in - both physically and emotionally with processing two new diagnoses/labels (and potentially a third diagnosis/label and people's responses).

    This does sound overwhelming and I can hear you are seeking support with this at the moment. In an ideal world, what would support look like for you at the moment? I recognise each of us experiences this in slightly different ways and, therefore, the support we need is also slightly different <3
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    I'm a community moderator. I'm here to help guide discussions and make sure Community Guidelines are followed. I can't send DMs, but you can message @TheMix or email community@themix.org.uk with questions or concerns.
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    Sunshine12Sunshine12 Posts: 82 Budding Regular
    @mxllxe_xox hey, I’m sorry to hear that you’re struggling. I have EDS/hypermobility so I know oh so well the constant invalidation we face cause we’re young and “complaining” of being tired all the time, but they don’t understand that we’re not just moaning we have an actual medical reason!!!
    Don’t know how useful I can be help wise, but I agree about the disability badges, and depending on the severity, u could try n apply for disability support with the government.

    If you’re in a job/school/uni, it can also help to make ppl in charge aware of ur conditions so they can assist u and give u breaks/accommodations + if they refuse/don’t believe u, then a good GP should help u write a letter
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    AzzimanAzziman Moderator, Community Champion Posts: 1,851 Extreme Poster
    Hey @mxllxe_xox, we see and hear you. Thank you for sharing your experience here - I can imagine that it was a big step, especially when you don't feel understood by friends. I'd agree with what others have said - if you feel comfortable, talking to your school/uni/employer about this might be helpful as they can provide extra support for you. We're here to support you through this <3
    FAQ | How to report a post | How to report spam
    I'm a community moderator. I'm here to help guide discussions and make sure Community Guidelines are followed. I can't send DMs, but you can message @TheMix or email community@themix.org.uk with questions or concerns.
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