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"Living with a mental illness is lonely, let's share our stories...."

"Living with a mental illness is lonely, let's share our stories...."

Is there any space, anyone here knows about, where I can feel safe and supported as a parent, a parent with neurodivergent obstacles.

I say neurodivergent because I am done, I am done with labels that seek to justify me, rather than address the concerns and problems and fears I have at any one time. These concerns and problems and fears fluctuate and it shouldn't be of a surprise to anybody, even an able body or mind.

"Do you feel a sense of connection, of bleonging."

No. I can tell you I participate and try to make that participation meaningful, but do I belong? No.
"Do you feel you are understood". Never. Only among those that I identify as struggling for self-care. Should I be devaluing' self-care' to make room better for self actualisation?

I just want to be heard, in a meaningful way. If I say I am struggling, and nothing has really changed between then and today, aside from life continuing and the sun and moon rising accordingly and myself ploughing through with what means I had already, then am I still struggling? Why do people assume I am not? What has changed to make them think so? Does the world really want to see me fall apart to understand me saying I am falling apart? Oh, so dramatic. Where are my alternate worlds when I want them. Honestly.

15 replies

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In response to: "Living with a mental illness is lonely, let's share our stories...."

Re: "Living with a mental illness is lonely, let's share our stories...."

I don't know. Do we expect to much from others? I feel alone and misunderstood most of the time. I know supposedly healthy unlabled people deal with distress in others by ignoring or try to control it only because they can't cope with it. This is how they cope with their own issues. I feel it's hard to truely understand unless you have been through something yourself. People want to be around people who lift them up and unfortunately when we are struggling we can't do that. Not fair but it's human I guess. It's one of those things that people can be there for a short time but not for the long haul. In my experience

In response to: "Living with a mental illness is lonely, let's share our stories...."

Re: "Living with a mental illness is lonely, let's share our stories...."

Hi @Sehnsucht. While you seem to have little or no trouble with writing down how you feel, I'm not sure I understand what you actually want or need from the forums. If you mean people don't talk to you or listen to you, could it be they don't understand what you are saying? I'm not saying you speak in a foreign language, but if you appear to be a jovial, happy natured person, then that's how you will be perceived. People see exactly what they're supposed to see. If someone has a physical disability, that's what is seen. If someone seems to be in total control of their life, with no problems, that's what is seen. Unless people see the real you and know the real you, they're going to see and hear what you say and do. No-one wants to see you fall apart, but if you are in need in any way, is there some way you could put that message out? In my job, we deal with people who have personality difficulties, anger management problems, language difficulties, because we know these people and understand their difficulties, we treat them accordingly. I'm not suggesting you basically go hat-in-hand and beg people to listen to you. All I'm suggesting is, if you let people know that what they see is not necessarily what they get, they may start realizing you haven't got it together. If they are genuine, they'll stay, if they are not, they will excuse themselves.

In response to: Re: "Living with a mental illness is lonely, let's share our stories...."

Re: "Living with a mental illness is lonely, let's share our stories...."

I dont have any place where a feel a solid connection @Sehnsucht.. or feel I belong with certainty .. not even my home, family .. or skin.

So its the continual struggle for me too.

@esprit makes the good points that i rephrase1) unlabelled people who "struggle" often ignore it in others and keep their distance.

Is that because they are not willing to be lumped in with supposedly inferior or inadequate humans .. tht they may have ridiculed & laughed at in the past .. is it stigma that interferes with inclusion & sense of community again?

hypotheticals I know

I have been lonely most of my life but I dont actually see it as part of the labelling, tho maybe it is a consequence of the insability of my family.. I am somewhat comfortable with being a loner & introvert .. tho dont fully identify that way either ..

I see it through a social science lens.

In response to: "Living with a mental illness is lonely, let's share our stories...."

Re: "Living with a mental illness is lonely, let's share our stories...."

Hi all,

Soooo.... had a bit of a meltdown last night, have recovered again this morning.
I wigged out over finding a group of Neurodivergent parents, but prodiminantly Autists, online, and felt comforted by its existence but equally felt perhaps I shouldn't be in that space (given I am not autistic).

I have been welcomed, there, crisis averted.

I don't quite understand my own words that I used to express ths all last night, so given I have no idea what I was actually asking I am thankful for replies but might have to come back later this evening to read through them so they make sense. x

In response to: Re: "Living with a mental illness is lonely, let's share our stories...."

Re: "Living with a mental illness is lonely, let's share our stories...."

Hi @Sehnsucht, in my experience people are much more comfortable with a crisis or an acute event than a long-term state of being. I feel like this is part of the reason that stigma around anxiety and depression is reducing, while other mental health issues are not. The story that a person is temporarily afflicted, gets treatment and then goes on as if nothing had happened, is far easier to accommodate. That MI can be a permanent disability seems much harder for people. And thinking of it as a disability reminds me of the (I think, valid) claims that people with physical disabilities make, which are that the social stigma and refusal to accomodate is far more damaging that the conditions themselves. Sorry - slight rant of my own there

In response to: Re: "Living with a mental illness is lonely, let's share our stories...."

Re: "Living with a mental illness is lonely, let's share our stories...."

@Former-Member. I tend to go along with what you're saying. I think the MI concern, is partly because people who lack education of this often debilitating condition mistakenly believe they might 'catch' something if they try to make friends with someone who has a MI. If someone who is physically disabled walks down the street - yes, people stare, but if it is someone who has a MI, this is often not realized till they speak. Because MI takes various forms (autism/aspergers, slow spoken, inability to maintain eye contact) the general, uneducated public tend to distance themselves more because of the 'I might catch something' stigma. The amusing part of this, is the fact that people with these defined MI I mentioned above are more accepting of themselves because, to them, they're not unusual. They can be extremely friendly, loving and are usually quite happy. People who suffer depression seldom interact because of the feeling they're not 'good enough'. Therefore they tend to 'shy' away and will only interact with close family. Depression is actually more debilitating because it's overpowering. Autism/aspergers, is usually not so overpowering and the adult with this condition usually has mastered the difficult art of communication. Autistic children remain silent as they are unable to communicate before a certain age. We do have some adult Autistic staff who are fairly quiet till they feel comfortable, then they usually interact with their co-workers.

In response to: Re: "Living with a mental illness is lonely, let's share our stories...."

Re: "Living with a mental illness is lonely, let's share our stories...."

Hi @Former-Member

I agree with you, I think the stigma around anxiety/depression is reducing however I feel very concerned about the perception that these conditions (and other conditions) are somehow not so debilitating because of the big focus on medication. Also, that counselling somehow may cure/manage these issues. My long-term experience has been one of so much internal suffering mostly behind closed doors because very few can handle knowing or hearing that this is my reality. This makes for a very lonely life unfortunatetly. We have a long way to go in this contemporary society especially with all the quick fix ideas.

In response to: Re: "Living with a mental illness is lonely, let's share our stories...."

Re: "Living with a mental illness is lonely, let's share our stories...."


@pip wrote:
Hi @Sehnsucht. While you seem to have little or no trouble with writing down how you feel, I'm not sure I understand what you actually want or need from the forums. If you mean people don't talk to you or listen to you, could it be they don't understand what you are saying? I'm not saying you speak in a foreign language, but if you appear to be a jovial, happy natured person, then that's how you will be perceived. People see exactly what they're supposed to see. If someone has a physical disability, that's what is seen. If someone seems to be in total control of their life, with no problems, that's what is seen. Unless people see the real you and know the real you, they're going to see and hear what you say and do. No-one wants to see you fall apart, but if you are in need in any way, is there some way you could put that message out? In my job, we deal with people who have personality difficulties, anger management problems, language difficulties, because we know these people and understand their difficulties, we treat them accordingly. I'm not suggesting you basically go hat-in-hand and beg people to listen to you. All I'm suggesting is, if you let people know that what they see is not necessarily what they get, they may start realizing you haven't got it together. If they are genuine, they'll stay, if they are not, they will excuse themselves.



Pip,

I think part of what happens when I spiral out emotionally like I did a few nights ago, is that I do acknowledge, openly to family and friends that I struggle. I will tell them when I am starting to feel empty, and my fight and flight response is so tremendously touchy, I am the kind of person that will get home and literally be screaming on the floor, self harming.

@I think @Briar touches on how I felt. That people think when I manouvre around that specific meltdown, and am no longer screaming on the floor, that suddenly whatever feelings or behaviours or habits that caused me to not cope, have disappeared too. That nothing changing between that night and the next, aside from me managing to hold myself upright, (and like, I need to, in order for self-care! I'm not talking about me having turned around and said "I am ok now".), somehow equates to no one seeing any urgency in helping me organise changes (be it having lunchboxes of snacks set up for our preschoolers, be it going for a walk each evening, be it calling around for another psych consult because my spoons in that respect are so far gone I can't even.)

And the fact people see me exhibit self-care, and use it to justify that I am 'well', despite I am indeed telling them I AM NOT WELL, means when I do melt down, I end up feeling self-blame and manipulative. Learning more about fight and flight (through parenting books, of all things! If i'd never become a parent, would I have ever known I am not a drama queen for sake of it, that when the invasive thoughts and compulsion to flail with force is actually driven by hormones?) has been such a relief, and I remind myself I am not being manipulative. But now I feel others maybe aare the manipulative ones, more and more. Telling me what to do, that I didn't tell tehm I wasn't ok, that I can't feel this or that. Gaslighting I guess. And I acknowledge those around me aren't intentionally doing it, but yet they are. That is systemic in society I guess, so yes, it probably all does come down to stigma.

Some of it too, is not having people in my life right now that enjoy deep thinking and throwing critical thoughts around, as much as I do. Or playing board games or cards or exploring art as down time. Most people, my partner included, see it tiring and borseome. They just want to watch tv. At times in life I have had opportunity to fill that cup, but at the moment I identify there are few. But this is being super picky and not the bigger problem. The bigger problem is not being heard.

Thank you all for replies.

In response to: Re: "Living with a mental illness is lonely, let's share our stories...."

Re: "Living with a mental illness is lonely, let's share our stories...."

@Sehnsucht, I'm not in a place to string words together right now but I hear you - and don't think you're rong. Will write more later

In response to: Re: "Living with a mental illness is lonely, let's share our stories...."

Re: "Living with a mental illness is lonely, let's share our stories...."

Hi @Sehnsucht

Good luck with the autie group. I did board games, cards & art as down time with the family. So come Friday I was very glad that my son chose to play scrabble rather than watching tv or a movie as our thing to do.

On Sunday I spent the afternoon at the art gallery, hadnt been for ages and promised self to make it more regular activity.

I have been up-front about struggling but also have to cope because others have needs. It is congruent with my circumstances and not really a cover. It has been most difficult for others to meet me where I am. I also dont want to burden them again with my story.

I actually surprised myself when someone whom I had a very upbeat conversation with on Thursday, which was genuine and real in that moment, was fishing for "what was wrong" with me on Sunday morning. I said I didnt want to make more of it. I have chronic pain, it may effect how I look. I said it again. tried to be nice about it. People are such complicated beings. She is very attached to being a coper and a carer, and I like many things about her, but I need calmness and she is not really able to relate to people in a calm manner. It hurts her when she is so keen to help. I also told her she doesnt need to know everything. Now, I know quietly inside me, that her "helping", is her way of escaping her own needs, we will see how it goes. It seems as if I am "meant" to have a feminising effect on her. Which is weird for me to acknowledge to myself.

I live the quality of your posts @Sehnsucht

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