20 - Chronic illnesses caring

Hello, this is my first time on here.

I’m 20 and I’ve been emotionally supporting my very close friend daily for the last 2 years. This was all done online over the phone. We could not meet eachother in person due to our family circumstances.

My relationship with my close friend/intended future wife(complicated) started one year before that. She had existing chronic illnesses but her illness is unknown still. I was a consistent emotional support for her at this time but it was nothing major, I was just the one person at the time who she could speak to and feel normal for once.

After 1 year her health severely worsened and she needed to have brain surgery to remove a tumor from her brain. The surgery was successful but ofc she had last all of her memories from the last 5 years or so, so she didnt know who i was or anything which was stressful as it didn’t seem liek her memories were going to come back and we had been through a lot together before that due to our situation which forced us to talk online and not be together the way we wanted to properly, I was sad because I thought I would be alone with the feelings of being hurt because with her memories gone she was like a new version of herself without any memory of me. I became a stranger to her at the time which was hard for me too.

Anyways, her memories came back after 2 weeks but ever since her reliance on my emotional support became very severe. Without me supporting her emotionally her physical health woudl severely deteriorate. Her chronic illnesses would flare up badly. She has been in hospital multiple times in emergency care because I havent been able to talk to her over the phone in time.

My care for her is daily now and if we have an argument or any sort of negative energy in a conversation can affect her health severely. Its not as sensitive as it was the weeks after her surgery but my carer has been the same way ever since. If I dont speak to her, her symptoms flare up alot. She has chronic breathing issues, chronic pain, cluster headaches at times, migraines often, seizures often, fainting/blacking out etc.

All of this is worsened if I’m not speaking to her etc in order to stabilise her symptoms with my emotional support. I do my care remotely and I haven’t been able to meet her in person dur to our family circumstances. My family are unsupportive of us beng in contact with eachother so my care is all done in secrecy, I have no support.

Its especially stressful at times when I’m not be able to speak to her immediately when shes close to dying because of her/my family members being around us and i cant afford us to be caught.

Everyday is draining, its so hard to just talk and talk in order to care for her. It has ruined my sleep and I’m finding it hard to form any routines because of this. Its hard to talk to her when she isn’t able to talk back to me due to her health being at times really bad. I dont know if theres something wrong with me or I’m just not much of a talker.

I’ve been struggling with feelings of guilt etc but I have been working on it for the past couple months.

A couple months ago I was diagnosed with ADHD which as u would imagine makes caring for someone quite abit harder due to the nature of ADHD especially since i have no support from my family for my ADHD too and i sought out a diagnosis myself.

I’m currently on medication titration however I think the dose I’m on isnt working too well. I have went to therapy for my ADHD/carer issues and it was a little helpful for the carer struggle as it confirmed that what I thought to do was not immoral.

They told me to set boundaries of when we could call as in his words “I can’t pour from an empty cup” This has helped but its just the nature of my situation to be rly unpredictable and severe at any given moment. So at times I have to break this rule in order to help her so my sleep is still affected and its hard to make any sought of routine, especially with having ADHD which im only recent diagnosed and trying to help myself with. However, I am making some progress with a routine which I’m very glad about.

My time in education was filled with alot of failures because of my undiagnosed ADHD so now that I’ve finally gotten the answer and some assistance in it I’m trying to pursue education.

Yet again, my family aren’t very supportive of it and arent happy with giving me time to get myself on my feet etc.

I feel really stuck because I want to pursue dentistry but i dont know how this will work whilst caring for my partner the way I am. I dont want to wait too long before I’m married and have kids. I feel I’m running out of time.

Ultimately, I just want someone to talk to who can relate to my situation. I know this sounds silly but I feel that no one has the same experience as me, I feel so alone and I struggle with understanding if my feelings about my situation are valid.

Only recently did I realise how alone I feel because of a little interaction with someone who was kinder than others have been about my situation and it made me happy. I felt so alone from that, I don’t know who to turn to, I don’t contact any friends and I dont want to. I feel alone in the sense that I dont know anyone who truly understands what I’m going through. Even when i go online I dont see anyone in my situation. I just want someone who understands and is in a similar situation to me.

I’m sorry if anything i said seems confusing or difficult to understand because of how I’ve worded things. I don’t know why but I’m terrible at saying what i want to say and forming sentences in any setting that isnt casual. I also tend to overthink/overshare or over explain things to the point its just confusing. I find it hard to understand things without specific precise wording so i think thats why. I just speak/text in a disjointed way.

So if theres any questions I can try to explain further.

Hi @TGhalib and welcome to the forum. You have quite a complicated situation to deal with! I’ve been a carer for most of my life, for different people over the years. Currently, I care for my wife, and our eldest son, who is 44, and we all help with the care of our youngest son, who has autism and is 40.

The big issue for you is to set a broad routine you can follow - start with a time for getting up in the morning and for going to bed at night. Try to fix mealtimes as best you can. It’s only a basic routine but it will help to ground you.

No doubt others will spot your post soon, but in the meantime you’ll find most of us hanging round here:
https://forum.carersuk.org/t/roll-call-december-2025/127939/

We call it “Roll Call” but it’s more of a chat about our day and mutual support. Take a look and join in if you feel like it.

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Thank you for the reply. Yeah i am currently in some sort of a routine but in order to have strict wake and sleep time i would have to not call her to help her. This would mean her sleep would be really bad which potentially can result in her getting 0 hours sleep or on average maybe 2 hours of sleep. This just snowballs every day i do that and then one day she’ll need me for the whole day/night if possible and then the routine is back to square one.

Rn i have had a routine for a couple days that I’m very ahppy with but i feel its only been possible because she hasnt contacted me for help and i feel its because she feels guilty for putting me through this and i unknowingly talked about my progress with routine the last time i spoke to her just to speak about something and it may of gave off the feeling that when shes away long enough i start to improve. I ask her if she needs me but she doesn’t really respond and has been feeling unwell. I worry but idk what to do. I feel maybe if i use this time to solidify my routine abit more it could work maybe? In my routine i have my call times incorporated in it. I hope it works when it gets truly tested.

@TGhalib No worries. What I would suggest is that you look at the times you know she’s going to need you. There’s almost always a pattern, even if it’s not precise. Then try to fit a routine together around those times. Build the pattern around her - she’ll feel supported and your routine will support you to help her and yourself.

It won’t be easy, but it’s worth a go.

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the pattern is she most desperately needs me past 10pm and Ideally for her I would stay until she can sleep which can vary greatly but its the way she can get decent sleep which makes a big difference on her mental and physical health too. I’ve looked on the roll call u linked, I think I’ll just lurk maybe. Hard to relate to anyone on there so far as i seem to be alot younger than them and not similar in experiences. I’m not much of talker anyways so i prefer to lurk its nice to see regardless. Thank you for your replies I really appreciate it. Also, I’m not sure how to even lessen this load in the future because this type of care is only able to be given specifically by me for her. She has her parents and family etc but they dont help like i do unfortunately and they dont help as consistently and affectively I do. My help has been better than any medication she has had or any doctor treatment she has had unfortunately.

She may have FND and she is currently going through the process to find out. Its a condition diagnosed by ruling out every other possible condition it could be. So it takes a while. I’m the one who originally researched on her symptoms and with AI and alot of questions by me to it and details of her symptoms and what i have observed on things specifically too, I ended up finding out that FND may be the most likely cause for her condition. I mentioned this to her last year and when she told her GP… they had no what it was and was googling it in the session. Only a couple months have they started to actually try to find out if it could be this or not. I would be quiet happy if I was able to help her finally get diagnosed and possibly cured or helped alot. May even put me in the good books of her dad lol. Although i feel i already should be oh well.

Hi @TGhalib To be quite honest with you, I’d love to say that her dad will come around…but my father in law never did. He tolerated my presence, just, but never forgave me for “stealing” his oldest daughter. It made our live together more complicated, but we saw it through together - and still are, over 46 years on.

FND isn’t well-known, but we have had a few carers on here who are caring for someone with FND - it might be worth starting a topic asking if there are any carers of someone with FND on the forum and see if there are any takers?

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Yeah your probably right sadly. That sounds like a great idea I wish i thought of doing that soone. Thanks for the help i really appreciate it. I’ll go make a post sometime soon.

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Hi, do you know how I can post without a tag in the specific disability section. The ‘other’ tag doesn’t work it keeps telling me I cant send with that tag but the other tags don’t apply to FND so I’m abit confused. Is there something I’m doing wrong?

I’ll take a look and get back to you.

@TGhalib as far as I can see, you can choose “no tags” as none really apply. Try that and see how it goes…

Hmm, It doesn’t seem to be working still as now it says i must choose a tag option. Its okay, I’ll email them to find out out whats up. Thank you.

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Hi @TGhalib

I have deleted the mental health tag - seems the tags are optional.

I wasn’t talking about this post. It was a different post i was trying to make in a different section that didnt allow me so I used the mental health tag instead since it felt most relevant to FND although not exactly.

@TGhalib I did it on both your threads.

Thank you for doing it. Not sure why this is happening when i try, oh well. I must be doing something wrong if your saying I can do it.

@TGhalib it might be to do with permissions, as I’m a moderator. Also, I’m not starting a thread without a tag but removing one.

Can you see an editing pencil?

If so, as a temporary solution, you could create a thread with a tag, post it and then use the editing pencil to remove it .

I see the editing although its bronze on my screen and i can’t edit these two posts i already have done. I think thats only because you have edited it as a moderator so its probably why i cant just reedit after u have edited. If I make another post I’ll give it a go, thank you!

Hi @TGhalib and I’m glad you were able to reach out via this forum. I’m going to focus my comments on you rather than your friend as your post reads like you are having great difficulty in differentiating yourself and your own life from her regrettably complex and chronic situation. You sound young (early 20s?) and vulnerable. You mention ADHD so I hope you are receiving mental health support with a counsellor or therapist for this and to support you in your very challenging and lonely relationship with your ill friend. You seem to have a number of beliefs which are common among carers but which are very self-defeating. 1) That you are the only person in the world capable of helping her. You are not; help is there for her parents to source for her. FND is a very complex psychological and physical condition requiring multidisciplinary input at specialist clinics. You will never be able to provide that and her mental issues in particular need expert advice. Not that of a struggling 20-year-old. 2) That you must orientate your time and life around her needs or her physical health suffers. I’m sorry but this sounds manipulative on her part as well as being medically improbable. With support I hope you find a way to disentangle yourself from this behaviour as it will never end while you continue to be constantly available. To read that a 20-something is spending his life as you are made me sad, it is not normal or healthy for you. Please get help and refocus on yourself before you lose more of your precious young life. I sincerely wish you the very best.

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Thank you for thy kind hearted message but I really don’t think she would pretend to be better in health by me. I have known this person for 4 years and only in the last 3 years did i find out that shes been ill for a while. I really don’t believe she is manipulating me. We have boundaries set etc now too. She has a specialist team of doctors and her family do help and shes also my age too she is 21 and I am 20.

Her family do help her but it doesn’t help the same amount unfortunately, there is one cousin of hers who actually does provide some help when they’re together like I do but not as consistently. I’m not sure if it still does the same help but I’ll ask her about it to see if we can do something to try and esse the load that way too. Medically, they dont know what she has but its probable that she has FND and I have asked on an FND group and seen that it makes sense why im able to help this way because its a distraction providing. Her family aren’t really there for her mental health and they cant rly do much physically for her so shes largely just in her bedroom alone and they come to give her food and check up on her here and there just incase shes in a really bad state so they need to call the ambulance etc.

Also, I don’t mean to act like i cire her by any means. She is stil in pain whilst im with her but its not as worse as it can get and she doesnt get super sick. She does need a multidisciplinary approach but I dont think she will get that until she is diagnosed. She has a psychiatrist and they are working on her past issues, trauma/PTSD too. She also was diagnosed with ADHD a couple days ago. My care only really became this important and affective after a brain surgery so i really dont think she is manipulating and it makes sense for it to be this if it is FND as a brain surgery or any stress can worsen FND so it makes sense.

Unfortunately I’m unable to get support from my family and her family won’t give her support too. Her mother knows but she cant really help me right now with anything. Its not like she can help he same way unfortunately so she cant just like ease my load by doing what I’m doing for her. I know its common for carers to feel like no one can care for the person other than them but right now it realy is. She’s been trying and still is trying all other options available and support available. I do hop with an FND diagnosis things will change but the biggest help would be her family members being supportive of me and mine too. They wouldnt be able to ease the load but maybe they’d just make it easier for me to carry out the help and also help us commit to the boundaries we set. Its hard for her, her brain fog can get really bad so she can easily forget the boundaries we set or not understand things. Her medication that she is taking rn which make her quite high in energy and kiddish in a way make her forget things too but shes less likely to ask to call at those times but can happen. She’s not able to take this medication for too long though her doctors said, i think its because of how high the dosage is. Sometimes if her seizures or symptoms get so bad, her sister or mum contact me through her phone because they get worried shes going to die or will need the ambulance if things dont resolve so they call me to help her. I haven’t really told them about the boundaries we set so maybe that would be good to do but i think those times should be exceptions where i should help but idk.

I feel my help is because she never had this kind of been with anyone else. She used to say this before i even became a carer like this for her. So i suspect that has something to do with why I’m able to help but these other people who are meant to be close, due to their relation to her, are not able to help. Also, probably because they have been in some part of the causing of her vulnerability to having FND triggered in the first place.