Hi, Im 17.. I struggle with the exact same things, but a different condition. My consultant told me at age 12 there was nothing he could do and I just had to continue to take my painkillers and learn to live with it, I was also told the same by my specialist physiotherapist. I used to really struggle mentally with the thought of dealing with this forever, but I found social media a huge help..Ive made a lot of friends and thats what gets me through. Im sorry this isnt much help but I did want to let you know theres other people out there.
Hi guys, in CWP area (Cheshire & Wirral) they have an Expert Patient Programme running which deals with most long term chronic conditions...... www.cwp.nhs.uk/resources/leaflets/expert-patients-programme/
I don't know if you can access it or "blag" your way onto it by offering to pay something towards it like its private or something? Your GP would know the possibilities. They teach you stuff like how physical pain WORSENS when you are tired (that's the most helpful thing I've learnt) some parts & some tutors are a bit patronising; we had to march round the room & discuss how we felt after. One bounced around room (Bipolar One), some limped (arthritis, stroke, etc) but two just seemed to be there for attention and benefits; none of us saw any symptoms of what they claimed. Damned annoying they were taking up spaces & it felt like "mocking" us.
There are also courses around on Mindfulness (which HUGELY helped me) "whatever it is (pain, anxiety, depression, etc) don't be afraid of it, it is already here, it already exists, you can already feel it, so focus on it, what reactions it causes in your body, breathe into it, acknowledge it, then let it go, just let it be."
Awareness is increasing all the time and lots of "community care" is popping up; chair exercise classes, gardening, walking (plodding) groups, art stuff, where at least you will meet other similar local folk struggling. I think loneliness increases symptoms too.
Essentially, as teenage mate above maturely says, YOU have to find and push for help yourself, no matter the anxiety involved. Also think about what YOU WOULD like to do; what you want out of the "help groups", doing fun stuff really helps your mood & pain. I "blagged" my way onto a local Society's "Exercise to Music for Over 50's" classes. I am not over fifty, nor a member of The Society, but found it on supermarket notice board, asked if I could join in due to my disabilities and loneliness and now go every week, jiggle around to Tina Turner, et al. (sometimes use chair for balance/sitting) and we laugh about farting & stuff. It is council financed so there are "did this help you integrate into your community/did this help your reading/writing/mathematic skills" questionnaires but ten minutes per term doing that for FREE and fun classes is a tiny price to pay. Look around; see what there is; what you fancy; ask if you are eligible (rules can be flexible, especially if courses are not fully subscribed) then try them out. At least it is a distraction, a gentle distraction, from "festering" under the duvet, behind closed curtains, very much alone, and feeling you have nothing and no one and no one who understands you. Because there are some more of us around! Good luck x