If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.
Find out how to let us know if you're concerned about another member's safety.
Find out how to let us know if you're concerned about another member's safety.
Feel like they don't listen to me
Options
Twistedchamp
Community member Posts: 1 Listener
I'm 45, level2 fusion L4/S1. SI Joint disease. Cervical spondylosis. Endometriosis. Fibromyalgia. I'm having problems with getting anyone professionally to listen to me. I've been pulled from pillar to post since 2002 with departments blaming each other for my symptoms instead of solving the issues. I'm at the lowest I've ever been. I feel like I'm just another stat number to them & they don't actually care. They promise me the world and never follow through with what they say. What they say verbally isn't what they put in my notes. I feel like I'm going crazy. Pain is over the 10/10 scale but 'ive got to wait' I cannot afford to go private unless I have over 22k I priced it up.i love our NHS but I've lost my trust in them and these people want to just use me as a pin cushion and keep doing 'lets try this' to see what happens. But they've been trying the same thing over and over. I have to be careful what I say because I don't want to end up with no help if that makes sense? I've lost my job again. It's ruining my marriage because I can't do normal things. My friends don't invite me anywhere anymore. Because if I smile it means I'm better.(if that makes sense?) I love my family & friends but they don't truly understand. Anyone else feel the same?
Tagged:
Comments
-
Hi @Twistedchamp, first of all welcome to our community. I hope this place will be a source of friendship and support for you.
I understand some of what you are going through. After I was diagnosed with Crohn's I was very poorly for many years. I just smiled and told everyone I was fine. I couldn't go out and eventually stopped getting invites. I fell into a deep depression and that really strained my relationship at the time, to the point that it did indeed break. I did get better though, I'm now in a much better place, it was difficult but I managed to weather the storm long enough until I did get help.
I'm going to send you an email if that's alright, just keep an eye out for itThey/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
Online Community Specialist
Concerned about another member's safety or wellbeing? Flag your concerns with us.
Want to give us feedback? Complete our feedback form now.
Opinions are my own, such as mashed potato being bad. -
Hi, I can totally relate to how you feel, I first started to become ill at 39 and over the years I've been passed on to many departments of our wonderful NHS who have all been brilliant in their own specialist area but it's been really difficult anyone pulling it all together to see the bigger picture.
My chronic pain was initially put down to my severe depression, then when I started to feel a little bit better in my head and the pain persisted, I was referred to physio, MSK, pain management, pain specialist, following MRI and various scans it took until I was 50 to be told I have cervical spondylosis, widespread ostoathritas, degenerative spine disease. I have many other health conditions but over the years I've pushed away friends and family as it's so difficult explaining yourself away as the pain on your face comes across to others as being miserable and you never seem to be able to win.
I'm on a lot of medication for other illnesses but to manage my pain a little I'm on naproxen, gabapentin, capsaicin gel and opioid patches which helps a little but I dread to think of the pain I'd be in if I didn't take the above.
I am slowly starting to have a bit of a life again and I have to use walking sticks to get around and I've started to take a "don't care what people think attitude" they can take me how I am or not at all!
It's taken me a long long time to start to feel a bit more positive after getting the right diagnosis, pain medication, support and financial help which all helps to start feeling like yourself again.
I do hope things start to work out for you and you get the right support and help you need
Brightness
Categories
- All Categories
- 13.1K Start here and say hello!
- 6.7K Coffee lounge
- 70 Games lounge
- 386 Cost of living
- 4.3K Disability rights and campaigning
- 1.9K Research and opportunities
- 199 Community updates
- 9.3K Talk about your situation
- 2.1K Children, parents, and families
- 1.6K Work and employment
- 771 Education
- 1.7K Housing and independent living
- 1.4K Aids, adaptations, and equipment
- 590 Dating, sex, and relationships
- 363 Exercise and accessible facilities
- 739 Transport and travel
- 31.8K Talk about money
- 4.4K Benefits and financial support
- 5.2K Employment and Support Allowance (ESA)
- 17.2K PIP, DLA, and AA
- 5K Universal Credit (UC)
- 6.2K Talk about your impairment
- 1.8K Cerebral palsy
- 871 Chronic pain and pain management
- 180 Physical and neurological impairments
- 1.1K Autism and neurodiversity
- 1.2K Mental health and wellbeing
- 317 Sensory impairments
- 819 Rare, invisible, and undiagnosed conditions
Complete our feedback form and tell us how we can make the community better.