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Chronic illness support
mxllxe_xox
Posts: 2 Newbie
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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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
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
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
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