Hi, my name is Laura. I’m in my early twenties and I’m a carer for my partner who has FND (functional neurological disorder) as well as a number of mental health conditions. They are also autistic and use they/them pronouns (for anyone who doesn’t know what that means, basically just replace ‘him’ or ‘her’ with ‘them’).
My caring role fluctuates depending on whether my partner is doing well or having a bad period. Right now, it’s the physical side of things which is tricky. My partner is rapidly losing the ability to walk and is having to use a wheelchair more and more to get around. This makes them miserable and worsens their mental health.
I have a lot of respect for those working in the NHS, but as whole, the system is broken. We are on endless waiting lists and nothing is happening. It’s really demoralising. When it comes to the mental health side of things, my partner no longer trusts the NHS at all because of previous bad experiences which left them traumatised. In the past, I have had to manage their episodes of psychosis, dissociation or paranoia by myself because we couldn’t get any actual help.
My partner is an amazing source of love and happiness in my life but I’m becoming tired and lonely. I don’t have a relationship with anybody in my biological family for safety reasons and most of my peers at uni have a very different lifestyle to me. It’s lovely to meet all of you - I’d particularly like to connect with people who are caring for their partners and/or are on the younger side like myself.
Thanks for reading 
Hi @Laura3691, welcome to the forum and I have had the same situation as you have had with the mental health service and this FND. I look after both parents but mum has the mental health and FND issues along side physical issues as well. The mental health team can be right idiots putting it in a reasonable tone. They should not have left in some of those situations as if it had gone wrong, they would have been blaming you for it when they’re in the wrong. I would speak to your mp about them as well as the health board. They is some information on FND but you ;need to have a understanding of certain things like mental health and neurological health to understand it. If you ever get into a dangerous position and no one can’t help to support you like the emergency services then speak to the carers helpline but also the safeguarding team. You need some support, maybe the GPS can help?
Take care and all the best. You are welcome to get in touch with me if you want to talk more about it.
Hello @Laura3691 - another Welcome to the Forum!
Sorry to say, I am towards the older end of the Carers here (63 year old bloke who’s been round the block a few times!) and I can understand that you want some younger company and to be able to share thoughts/experiences with younger people than some of us “old fogies”, however, you’ll find a warm welcome as I don’t think any of us think about age (apart from the aches and creaks which come with passing years).
I care for my husband, Graham, who suffered a stroke 2 1/2 years ago. Prior to that we ran a small medical practice with him seeing 25+ patients a day and me dealing with the admin and talking to 100+ people in the workplace each day. Suddenly … NOTHING… we lost a lot of ‘friends’ and most social contact overnight as we had to close the Practice and became partial recluses. We only went out for medical appointments.
Whilst I’ve no experience of FND, Graham has mobility problems and uses a stick around the house and a wheeled walker when outside - he usually refuses a chair, but its essential sometimes. He’s also had a cascade of other medical problems which have kept me/us busy - including major continence issues which can be enough to test the patience of a saint (and I am definitely not Saintly). Family have walked away from us and that’s the biggest upset as we get no support from them at all, now we are of ‘no use’ to them.
IT must be particularly difficult seeing peers at Uni going out having fun and joining in sports or other activities, knowing you can’t just drop everything and have some “fun”. My admiration to you for sticking with your partner - they must really feel the love you give them as so many would just walk away. Great to read that you get great love from them too. The feeling of isolation must be awful for you. Are you able to get a break at all? With Summer Vac approaching, is there any chance you can get some “Me Time”? I am sure finances are tight, so it may not be a possibility for you.
Have you contacted your local Carers Support Service? They will be able to give advice and steer you towards support groups for younger carers. They can also help if you feel isolated - I’ve recently joined in with a Walk and Talk group (I was apprehensive sat first but there are lovely people who have become friends) and have just joined in their Phone Befriending service (only for 6 weeks whereby I get a weekly call for an hour just to chat about anything or nothing and it’s been a lot of fun already.
Many of us on here care for partners and we know how miserable it can make you feel. I lost my rag with Graham on Saturday when he moaned that he thought the lounge looked untidy. My response was completely over the top and I shouted at him asking when he became a total invalid and why HE wouldn’t do anything to help instead of just criticising me all the time. I pointed out he kept telling me to slow down and rest and make time for me and I responded with ‘when do YOU allow me to do that…?’ A BIT over the top, but shows that we all have our breaking point. It did have some effect as he has done a few minor bits and pieces (although not much)…
You’ll find a wealth of support and empathy on here and you can say what you like (as long as within the Forum rules 
) as we all understand the pressures and this is a safe place to vent as well as ask for advice. If you have a mooch around, you’ll find the Roll Call thread where we regulars have a gossip (a chat over the garden fence) https://forum.carersuk.org/t/roll-call-june-2024/125122/269 and there you’ll find friendship too. If you feel like it, say a quick hello and I know you’ll get a warm welcome. we don’t always have answers, but we do have loads of experience which can be shared.
Take care and hope to see more posts from you. 
Hello from me.
I too am older and care for my 85 year old husband who is medically non complaint.
I do admire you but would beg you literally to get support for YOU as you deserve a life too. If you have a local ‘Support for Carers’ I agree with Chris that it is worth making contact. They may well have regular meetings and a group for younger carers. I have a telephone befriender as cannot easily get out - they are often former carers and it may be worth progressing this? There may be a waiting list as they would try to match you with someone similar age/interests.
Roll Call is very supportive and no judgement. We share what is going on in our lives and the challenges we all face. We also have some humor filtering through too and for me, it has been a ‘life saver’ at times. There is loads of support and empathy. You can share as much or little as you feel comfortable with.
Finally I can understand your partners distrust of the NHS. It took lots of courage to write to my husbands GP re his mental state and whilst they were fantastic, the Memory Clinic discharged him even though on the phone they had said that the brain scan showed ‘moderate atrophy with along with the symptons fits in with Frontotemporal Dementia’. However, he passed the memory test last May and I am left to deal with him with no support even though I am terrified he is a danger to himself and to me especially when it comes to using the electric hob. No easy answers but you are not alone.
Hi Laura, welcome to the forum. I’m 72, a carer for most of my life, but I studied for an Honours degree in Business Studies with 2 small children. Later my husband and I ran a business together and ran a national lorry club including writing a quarterly magazine described as the best of it’s type in Europe. I kept going for a few years after I was widowed just to prove I could. You don’t know what the future holds. It’s really important that your partner accepts outside help so you can have a career and some girl friends. If you love him enough to stick by him despite the limitations of his disability, then he needs to let you do this in return.
Thank you so much @Michael_1910123 . It’s great to hear from you. Thank you for those suggestions. I didn’t know about the carers helpline so that’s good to know. We’ve even shown up at A&E before because of the risk with mental health symptoms and we’ve been sent home every time with no immediate help. It makes me feel better to know I’m not the only one feeling frustrated by these services
Hi @Chris_22081 . Thank you so much for this lovely response. I nearly cried when I opened my laptop this morning. I wasn’t expecting this many replies! I massively relate to what you said about suddenly losing a bunch of ‘friends’. It’s been heartbreaking to be honest.
Thank you for sharing about your situation with family support. I don’t have anyone in my biological family right now and it hurts after every difficult day when I wish I could pick up the phone. All of my friends and my partner have at least one supportive parent, if not two.
I’m trying to carve out little bits of me time. I’ve been doing some arts and crafts type things which is nice. I’m working all of next month on residential summer courses for young people (my partner will go to their parents) and then we’re moving area which will be a lot. I’m starting a teacher training course in August and I plan to tell them I have caring responsibilities so hopefully they can make some accomodations for me.
I did try to get in touch with some carer support stuff, but they said I had to be a registered carer which I haven’t got round to doing yet. I will probably wait until we move area so I don’t have to do the same process twice.
I really appreciate your kindness and openness in everything you’ve said. Thank you.
Hi @selinakylie . Thank you for reaching out, I appreciate it. I’m definitely going to try and build up more of a support network for myself. Joining this forum has been a great first step.
I’m sorry to hear about the experience you had with healthcare services. My partner refers to it as ‘flow chart mentality’ - if you present with anything unusual or complex then the computer says no and you don’t get the response you need. I’m sorry you don’t have that support. My partner has fallen a few times and thrown boiling water on themselves accidentally. It worries me the next time could be more serious. I took a first aid course which gave me a little bit of peace of mind - my workplace paid for it and I would recommend but they are expensive.
@Laura3691…welcome to the forum. I’m older than you at 55 and have spent the last few years caring for my husband who is 59. His health has rapidly declined over the last couple of years resulting in a lengthy stay in hospital and then in a care home for physio before returning to the family home this April. He wasn’t able to cope at home and is currently in a care home awaiting a permanent place in another home which is less expensive.
The guys on this forum are amazing and we all support each other as much as we can.
That’s good that you’re starting to carve out some time for yourself, that’s really important.
The teacher training course sounds good, it’s a hard but rewarding career, my younger brother is a teacher and has taught all around the world, he’s currently in Brazil teaching. 
Hi @bowlingbun . Thanks for your reply, I appreciate it. That sounds amazing. Thank you for reminding me that good things may come.
I think my partner would accept more outside help. Unfortunately, we don’t seem to qualify for anything. We’ve been turned away from a number of services. We’re moving area soon and I’m hoping a fresh start will give me the chance to make some friends.
Hi @Sue24 . Thank you for your reply. I’m moved by everyone’s kindness. I’m sorry to hear about your husband. I’m glad your brother has had a good career with teaching.
Hi @Laura3691, you are very welcome. If the hospital sends you home again or the mental health team ignores you tell them that they have a ‘duty of care’ which they don’t like being made to be pointed out to them. There is some information on FND on Scottish NHS can be found via Google as well as a workbook as well.
I’m 27, probably not so much older than you. I myself became a carer whilst I was still at uni. I finished my undergrad course in June 2020, my dad was diagnosed with cancer in August 2020. I stared my masters in September 2020, dad died in January 2021. I became my mums carer then to. Dad died a couple of days after my 24th birthday.
I care for my mum, and I have my own health conditions OCD, PCOS, and anaemia. I struggle day to day although I am high functioning.
Being a young carer is so hard. Its also a nightmare dealing with the NHS as brilliant as they are. In my experience, it hasn’t been the treatment that has been the problem. Once I am undergoing treatment from a proper trained specialist, it works. Its the fighting with GP’s that I have found to be the problem.
To manage one of the major symptoms of one of my conditions, I was put on a medication which can be seen as abit controversial. It can be bought privately ‘without prescription,’ however people often lie to get it. Medical professionals attached some strict rules to it in order for it to be prescribed on the NHS. Its given to people who are diabetic, however I have something called Insulin Resistance which is like being diabetic without been diabetic. Left untreated it will probably turn to diabetes.
Under the GP I don’t meet the rules of the medication. They expect it to work 100% in accordance with achievable goals. For me its about 70% effective, but the only thing that ever shown any improvement. Years of stupid programmes and self care haven’t worked and still don’t work. The consultant allowed me to stay on the medication on the grounds that it is the only thing that really works and 70% percent is better than nothing. The GP’s have other ideas. Its a constant battle.
In regards to waiting lists have you tried contacting your local NHS Pals service. I tried this and it helped me to get seen faster.
Hi @Laura3691 , another FND carer here! He’s got other health issues (physical and mental)as well, but the FND has the most impact on life. I’m in my 14th/15th year of this lifestyle change. Now in my 40’s.
Welcome to the forum, and feel free to reach out if you want to chat more about FND specifically
From what you have told us, you both should have more support from Social Services. A Needs Assessment for them and a Carers Assessment for you. Assessing what support you both need.
Hi @Coolcar98 . Thank you for responding, it’s great to hear from you. I’m sorry to hear how difficult things have been.
I definitely relate to what you’ve said about being a young carer. I feel like medical professionals don’t take me as seriously when I try to advocate for my partner so I have to push that much harder. It sounds like you’ve really been through it with the NHS. GPs can be particularly frustrating sometimes.
My partner has contacted Pals before. They’ve been somewhat helpful but they’re limited in what they can do. At the moment, we’re stepping back from pursuing some of these services as we’re both too exhausted. My partner had a better day today so hopefully we might be coming out of this bad flare up we’ve been stuck in.
Hi @Pegasus . Great to hear from another FND carer. I feel like it’s such a misunderstood and under-researched condition. Thank you for welcoming me
I think that might be true @bowlingbun . Unfortunately the system is so broken. We know of others who are much more of a danger to themselves who have tried and failed to access social care. It seems like there just aren’t enough resources to go round. When we move areas, we might pursue it but it’s not worth jumping on a waiting list here as we’re moving in a couple of months.
If you feel OK to tell us which LA area you are moving to, there might be someone there to give you ideas about the best way to get support there.
That’s perfectly understandable. I know fighting can be tougher than it needs to be. I know too well that though pals are a great resource, however sometimes you are too exhausted. That’s me at the moment.
I’ve definitely put my own health issues on a back burner. I’m trying to get back into helping myself. At the moment I’m too exhausted myself so I need to practise what I preach.
You also said you don’t have a great relationship with family, I don’t know why this is. However I can relate to you. I have a very small family, I never knew my grandparents. I don’t have a relationship with most members of my mums side through choice (not nice people) and I barely know the ones on my dad’s side (they are abit stuck up). I do find it hard, when dad died I felt like I had lost my identity. Even now I battle with it. However, I have to stress you are not alone. Be you and be amazing!
I’ll make an assumption based on your age that you’ve seen it. But there was a scene in series 4 of sex education where Mauve has to organise her mother’s funeral despite the fact she’s only 18. Afterwards she has no real family only the good friends around her. I was 24 when dad died but that scene resonated with me because of how young I was when I organised my dad. It’s a great metaphor for the fact that young carers often have to deal with things so far beyond anything anyone realises meanwhile other people look at you like your a three year old in a pram.
Have you considered finding another outlet? though I know this is easier said than done. Caring is so hard. I don’t hold back on my opinion that younger carers have alternative needs that often get missed, however this opinion is aimed at those in power. Then again every single carer has different needs at different stages, and everyone faces different challenges.
I do believe that younger carers almost go through a crisis and a loss of identity. You’re still young and your early 20s are so crucial, so my advice would be look after yourself too. Go at your own pace and find out who you are. You are so much more than just a carer!
Your student union may be a great outlet too. I found mine (average but fairly well regarded uni) to be excellent. I was on the student media teams. I was one of the editors for the newspaper specialising in newspaper design alongside being a head of news for the radio station. Sign up for clubs and social activities where you can find likeminded people. These are also an excellent way to gain some experience for the future depending on what you wish to do. You may also find that they can put you in touch with charities and organisations who are looking for volunteers to do certain things. I was put in touch with a charity who do spoken newspaper packages from the local newspapers for blind and partially sighted people who can’t read them. I worked as a sound recording technician once a fortnight a long while before covid hit. It’s where I learnt about the company I work for now.
I know unis come under fire a lot, however they are so much more than just courses.
You may also have some hobbies which you can channel into. I’ve recently got really into music again, I mean not just listening to it in the background but really going for it. I recently found a new band that I really like and I can’t stop listening to them. It’s those little things that make you yourself.
I guess what I’m saying is just look after yourself, and do things for you. You love and care for your caree as every single one of us does on this platform. It’s very easy to get lost in someone else’s needs.
Someone once said to me many years ago, how can you be a carer when you can’t look after yourself. I detested them for saying that because they’ve clearly never met a single carer in their life. But in some way their words were true.