Lived Experience Forum

[D1ng0]

Hey, folks. I hope you're doing okay. I really need support, advice, insights... or whatever comes to mind when you read about my situation.

TL;DR: I am dealing with several mental illnesses and a physical disability, but I feel pressure to be happy around loved ones, and I don't know how to convince people that I'm unwell. If you have dealt with that too, how have you coped and communicated?

I will be seeing a loved one soon. It feels like an important opportunity to tell them what I'm dealing with, and to emphasise that I am not okay. But I really struggle to do that. With this person in particular, I often downplay how much I'm struggling and try to put a positive spin on things, because I'm worried about upsetting them. This can help me in the short-term, as it makes me feel temporarily happy and reassured, as if things are under control... But then I crash later and I'm left without support, because I acted like everything was fine, so why would anyone think to check in on me? At that point, I become too depressed to reach out to anyone, or I do reach out and people don't seem to believe I'm struggling, because believing I'm fine is less scary. Several family members, at that point, even try to downplay or minimise what I'm dealing with. (Bulimia nervosa is easily fixed, right? Just eat normally!)

I feel like the people around me (not that there are many nowadays) don't know how to handle me being seriously unwell. I've internalised that. I feel guilty when I tell the truth about my physical/mental state, because it makes people frustrated and scared, and they ask me what the solution is, as if I've got the answer and I can tell them how to fix me. It makes me feel like I'm a problem.

I feel a lot of pressure to be okay. And, when I confess that I'm not okay, I don't feel heard. If you have dealt with similar dynamics, how have you cut through the bullshit and made people actually listen to you?

Extra details below. TW for chronic pain, suicidal and self harming thoughts, and stigma/misinformation about suicide.

Content/trigger warning

At some point, I also want to tell the people closest to me that my eating disorder, depression, trauma, anxiety, et cetera is also causing thoughts of hurting myself, or ending my life to stop the chronic pain since nothing else will. It feels horrible to be going through that alone. But I worry that this will make the people closest to me very distressed. One of my family members also has really awful views about suicide, and would not believe me since I've never acted on those thoughts, therefore I'm not "really" experiencing suicidal thoughts... And, in their view, people who are "really" suicidal can never be saved from committing suicide, so they'd dismiss me. That's another barrier to being heard.

Advice, solidarity, or just some kind words would be appreciated. Thank you, folks.

[Friendlyflutter]

Hi @D1ng0 

Sounds like a really difficult position to be in, as you are aware that you want support from people around you and want to share your actual thoughts and feelings but cannot because struggles are misunderstood and it makes you feel dismissed and unheard. 

I am happy that you reached out here and shared what is happening, it takes a lot of strength to reach out. 

[D1ng0]

Hey @Friendlyflutter, thank you for that. That is definitely how I feel. It's nice to have someone recognise the struggle. I'm eager to hear how folks on this forum have coped when dealing with similar situations.

[chibam]

Wish I could help, @D1ng0 , but I'm more or less in the same boat, and I've never been able to figure out a solution. In my case, the problem (near as I can tell) is that I want to say and hear one thing, while everybody else wants to hear something completely differant. And that leads to a twofold problem:

1. What is it, precisely, that they want to hear, since their expectations are confusing and nonsensical. They never provide me with a script for what they want me to say and do.
2. How far can I go down that road without becoming paralysed by the self-disgust?

I guess that probably isn't very helpful to you, though.

Would it help to imagine meeting with your ideal sort of people? People you could say exactly what you want to say to, and be able to count on them saying exactly what you want to hear back. What would those people say?

[D1ng0]

Good morning @chibam, thanks for your empathy. It's good to read someone else's experience. The fact that others are struggling with similar expectations does help me feel that my situation isn't completely unique. (I'm sorry you're dealing with this too, by the way.)

I don't think I'm struggling with self-disgust, but the situation I'm in does lead to resentment of other people and a lack of faith that I'll ever be properly supported, and for me that's the scariest part. It's a form of hopelessness that really frightens me. I've started to wonder what the point of opening up is, when it's so painful and seems to achieve very little. But the common advice in response to mental illness is "reach out and tell someone". What for? So that I can feel worse?

But at least I have this forum 🙂

Thanks for the prompt of wondering what the ideal people would say. Thinking about it, I just want someone who will recognise how hard I'm working just to function, someone who will take my conditions seriously, and who won't immediately centre their own feelings about my conditions.

I don't know if others deal with this specific issue, but I really hate being given practical advice/solutions by family members, when what I really need is simple emotional support and affection. Especially because the advice usually assumes I'm not doing anything to help myself (wrong), I haven't explored multiple coping mechanisms (wrong), I just need to move on and get over it (wrong), and I don't really understand my conditions (bizarrely wrong).

Thanks for reading all of that, I'm just trying to get all my feelings out.

[lavenderhaze]

Hi @D1ng0,

I hear you hun, and I can understand exactly what you mean

Sharing our pain is often the most challenging when it's with a loved one because it's high emotion and intensity.

There's a lot of filtering that happens when we talk to our friends and family. I do that, and I believe everyone does it at some level. For the same reasons as you mentioned - you don't want to upset or shock them.

Being vulnerable is hard, but in my experience, it can bring people closer.

Last year, my brother shared that he was having suicidal thoughts.

To put things into context - he is the most reserved person I know. It must have been very difficult for him to say that to me, and it was difficult for me to hear it as well, but it brought us closer. I think it's about finding people that you feel safe with. Someone who is going to dismiss suicidal thoughts and you are probably not the best option. Are there people around you that you think will listen and validate your experience? You're not a problem that needs to be fixed. You can let them know that you just want to feel heard. 

I am so sorry that you're not feeling supported. That must be so hard. It's amazing that you have decided to share your story with someone close to you; that takes courage. We're all here for you!

[D1ng0]

Hey @lavenderhaze, thanks so much for leaving me some kind words. I wasn't able to tell my loved one that I am struggling so much. I kept wanting to be completely honest but I just couldn't find the words to interrupt our happy/casual conversation with some pretty serious topics. It was very frustrating for me internally. When I feel pressure to act like I'm fine, it seems impossible to defy that.

I'm really glad your brother was able to share that with you. I wish I could have a similar experience, but I don't think I would, even beyond my malicious/misinformed family member. Because of the suicides in my family, I don't think I'd be validated. I'd probably just make people very frightened for my wellbeing, and the conversation would become focussed on making them feel better about my suicidal thoughts. Which I can get. I know where the fear comes from. It's completely understandable to react emotionally and worry that history is repeating itself. It just doesn't leave much space for me to disclose my struggles without the expectation of urgently fixing me. The journey of addressing my bulimia, chronic pain, depression etc. is a long road, and I can't speed it up to make other people feel less scared about my wellbeing, if that makes sense... if I already feel that pressure, it'll be dialled up in an extreme way if my family finds out about my suicidal thoughts. I want to be honest about what I'm going through, but I don't feel like it's possible.

Thanks again for your support, and for reading all of that. I guess I'm trying to reconcile what I need with what my loved ones can provide.

[MermaidHair]

Hey @D1ng0, 

I really hear you and feel you with this and it is something I have absolutely struggled a lot with. It is such a tricky thing with mental health, I think for some people unless they have experienced it themselves they really struggle to understand it.

I hope things go well with your person, opening up is a very brave thing to do and it's for all these reasons and dynamics you describe why so many people struggle to do it.

This might seem like strange advise when dealing with the down players and minimisers in your family, but what has helped me is to remain compassionate to my loved ones, that's right. Even when they can't understand and have failed to support me adequately, I started to realise that they are lucky they don't understand and I'm happy for them. Do not get me wrong they are well meaning and they love me a lot, they are there for me, but when it comes to the more nitty gritty, deeper or darker aspects of my struggles, I may as well be speaking a foreign language, they do not get it. I need to emphasise it is not because they don't want to or don't care, I think they're genuinely incapable, like it's too far from their reality.

What helped me was to stop trying to make people like that understand. I do also have some very understanding and compassionate people in my life, some of them are friends, some are professionals and some are online! While I wish these family members could be more like that I now just accept that they're not but I love them anyways, and I lean on the understanding people more. 

Good luck with everything and know you're not alone, living with invisible illnesses is hard and sometimes our loved ones see us a lot stronger and more capable than we are, because they love us 💜

[D1ng0]

Hey @MermaidHair, thank you for your empathy and advice. I really appreciate it.

Like I said to lavenderhaze, I wasn't able to tell my loved one about what I'm really going through. So I'm very frustrated at the moment. I think your words will be really helpful to me when I'm in a better state of mind, but right now I just feel tired and angry.

I can't help thinking... when does it stop? When can I be looked after by my parents, instead of acting like the parent? I spent most of my childhood and teenage years being a therapist for one of my parents, I spent most of my transition making excuses for the way I was misgendered and mistreated, I first experienced suicidal thoughts during my transition because of my family's lack of support, and now I'm once again having to be the bigger person and put my needs second. When does it end? What will I have to go through before other people do the work to put me first in my mental/physical health journey?

I'm getting tired of repeatedly saying, "it's hard for them," and that taking priority over, "my life is in danger".

[tyme]

Hey @D1ng0 ,

Thank you for your thought-provoking posts. 

Please know we are always here to support you.

Give us a yell if you need anything.