Nobody noticed I was late to the party

Hello @500bluebirds

It is good that you finally felt like posting on the forum.

I have felt invisible a great deal of the time. That sensation is starting to fade. I loved going bush walking when people are on the trail they often acknowledge you as they pass from the opposite direction. The logical me figured they must have seen me. That situation also happens when I walk in my local neuighbourhood. Some people think it is not right to smile at strangers ... and freeze me off but plenty think it is quite the civil thing to do and if I dont manage to get a smile back in time we both feel awkward .. but then I try not to make more of it than it is. Just a moment.

Do you live with your parents and family. Are they the ones walking past you?

It sounds as if you have had a lot of diagnoses but have been put in the too hard basket. Which is a horrible thing to do to a human being.

I have a feeling the immune system is somewhat involved in some manifestations of mental health problems. Your ankle swellings may have to with that but of course I am no doctor and cannot tell .. just giving you a welcome.

regards Apple

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@500bluebirds wrote:

Hi. I'm not great with introductions so please bear with me. I've been following the forum discussions for quite some time now but only joined and made my first couple of contributions earlier this year. I have been holding off on the introductions because, as I mentioned before, I suck at them... but I have also experienced two large life changes early in the year that have had a heavy impact on me and my life, and there's just so much to try and live with day to day + these two new events, that it's become overwhelming and I just wasn't sure where to even begin.

As things are at this very moment, I've reached another breaking point - and it's not my first. I'm honestly so so exhausted and have been worn down by so many people, and to top it off, everyone treats me like I'm invisible or that I'm beneath them (minus my support person).

Some background: I've been dealing with MI and general health problems for quite some years (according to my mother, I've had problems since I was about 2yoa and progressively worsening since around age 10-12) but only started treatment in 2010. I was officially diagnosed with major depression (psychiatrist updated diagnosis to depression with unexplained moments of mania) and GAD (with social anxiety and agoraphobia). Last year I was diagnosed with severe complex sleep apnoea. I have iron deficiency anaemia with longstanding iron problems (incl absorption). Other problems include sore and restless legs (hips and legs), multiple unpredictable parasomnias, hallucinations (which is still being swept under the rug), unexplained swelling and pain in my legs and ankles (swept under), hyperacusis, increasing and sky-rocketing irritability, insomnia and hypersomnia, and being monitored (half-heartedly) for possible underlying autoimmune problem/s.

I also get this symptom or phenomenon a lot but I don't know what to call it or if it has a name: I'll be looking at someone or be conversing with someone face to face but then I'll get this odd sort of sensation where the person looks like they're getting smaller and being pulled/pushed further away, even though neither of us are moving. It's so hard to explain. One of the only ways I know how to describe this is like a scene from the first LOTR film where Frodo looks down the road before the ringwraith appears. There's a push/pull drag. Accompanying this is also a sort of dulling or reduction of volume related to the other person. Like someone putting a muffler over the top of the conversation. It's sort of like zoning out but I'm desperately trying to zone back in. I can't control either of these things, and I'm sure I've made it confusing. I just don't know how to describe it.

I still have issues that I haven't spoken about here but I'm trying to keep this as short as I can (which still looks like it'll be lengthy). Most of these things have been and are still being ignored or dismissed, even though they're distressing and are tearing me apart from the inside out. No one listens to me.

As a side note, I'm working towards a drug-holiday (I hope that's okay to say on the forums. If not, please delete) which will see me off all medication and try to re-examine my mental health and hopefully get a more accurate diagnosis.

I don't have any friends, I keep to myself, I'm happier now that I've removed toxic relationships (incl abusive "friendships") and now there's only selected family and 3 friends (via FB). Social situations don't help and I'm not the kind of person to go out and make new friends or enjoy being around people. I'm just not that type of person - but again, people don't listen and still force me to go out and interact with people I don't know or like, and people who bully and abuse and ignore me. I've been described as a "loner" and fine with that. I have an extremely hard time trusting people and opening up. Even though I've always been shy and a bit of a pessimist, I consider myself to be a really nice and compassionate person, I'm always willing to listen (or read in this case), and to help any way I can, and try to be positive and happy around others but I feel like I've been slowly changed by people and how they treat me. I've become more bitter and cold, more irritable, and I've been isolated by others and myself. I also try to avoid conflict, which ironically causes conflict.

I've loved art and drawing all my life, however with time, MI and physical illness, this has faded and now I don't do anything that I used to enjoy. I have reminders all around me that I'm not good enough, and it's always a competition. I'm actually struggling to think of who or what kind of person I am. For example, some will describe themselves as a mother to # kids.. and so on. I'm just existing at the moment. Barely.

I've seen a plethora of gps, psychologists, psychiatrists, and specialists. Have thought about a Naturopath, but still doubtful I'll see any positive change. I've been told by my doctorS that they "don't know what to do" or they "can't think of anything", that they KNOW something is there but they "don't know what" and STILL they do nothing. They send me away to suffer alone and expect me to just "push through" the pain and "live with it"... all the while, they do nothing. No follow ups, no referrals to see someone else, and as much as I tell them and try to show them my visual physical symptoms, they never examine me. I have photos of my ankles where it LOOKS AND FEELS like golf balls have grown in and around my joints. Still, they sit back in their chairs and point fingers at any of my known conditions (oh, it's your medication, oh it's your hypermobility, it's your sleep apnoea, it's this it's that) - without examining me or through proper investigation.

Most days I'll be crying, sitting and looking into space, cleaning, and sleeping. I'm exhausted and restless at the same time. Everyone at home just ignores me and walks straight past me without saying anything or asking if I'm ok, or just sitting with me,.. not even thinking I may just need a hug. My support person is the only one who will see me crying or doubled over in pain and actively try to help.

I wish I knew how to keep this short without rambling. I guess, to sum things up.. I'm alone, lonely, in pain, feel invisible and isolated, overwhelmed, and I can't hold it in anymore. I'm really sorry this is so long, and isn't a pleasant post to read. I really am.

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Hi @500bluebirds

I think you are incredibly brave and courageous person putting yourself out there like this and being so open and honest. You write so well and express yourself so well too.

I know what you have written is just a part of your story but you have written really resonates with me, and thank you so much for sharing.

I think you should do whatever makes you happy. And I think it is important for you to find your own voice and authentic self, would be a good start. You sound like a really nice and compassionate person, and I understand why you find it hard to trust people because of your experiences and also because you have been hurt by others.

You seems like you are in a difficult place right now but don't confuse your path with your destination. Just because it's stormy now doesn't mean you aren't headed for sunshine.

I'm not sure if you need extra support and you should go talk to someone you trust and if you are not happy with the treatment you are receiving you can always see another Doctor.

I know you said you enjoy your artwork so perhaps start getting back into this but just a little bit at a time. You mention some crisis in your life earlier in the year and your at breaking point. What do you want to do about this? Are you okay?

When I have been in a crisis myself I've had the option to go into hospital and not sure if you have thought of this or if its possible for you but I thought I would throw it out there.

Once again, I think you are so brave putting yourself out there like this and being so candid about what is happening for you and being so open about your feelings. I think you have to came to the right place because there are so many wonderful and caring people here.

I truly hope you start to feel better, and I hope this helps in some way. Chin up my friend. I'm here if you ever need to talk some more. Take it easy xox

Hi @Appleblossom,

Thank you for the welcome.

Yes, I live with my parents and family. They are also the ones ignoring and walking past me (all but one). I mean, my family is wonderful and I still cling to our family values (including "family is everything"), it's just since nearing the end of last year, it feels like they've distanced themselves from me. On the flip side, I feel like this pervasive irritability has distanced myself from them. Still, it hurts when I get ignored and treated like dirt.

It's not just family though. I've experienced this invisibility the majority of my existence. From everyone. Strangers on the street, at the supermarket, in cafes/restaurants, etc; throughout school - my mum has experienced the same thing throughout her life. We're just that "type" (whatever that may be) that gets ignored wherever we go. It's not just "feeling like" I'm invisible; I am invisible.

Is bush walking something you do often? I was an "every now and then" bush walker. If I was invited, I'd go. I'd take my camera - my profile picture is a photo I took while out exploring.

I believe all of my problems are interconnected. I also believe that I have more of an idea about what is "wrong" with me, than my drs. At least, I like to think that I'm an expert of my own body.. for years I've being going to my doctors saying 'this is what I think is happening/I need tests done or I need antibiotics/etc etc - and each time I've seen them, they've pointed fingers saying it's because of [existing blah condition], and tests have come back confirming my original thoughts, not their diagnosis. So it would be very interesting to find out if all of these things are hand-in-hand, like you and I suspect.

-BB

Hi @Former-Member,

Thank you for your warm welcome.

I usually need a lot of time to sit and organise my thoughts, so it doesn't all come out in a waffley mess. So I'm really glad that this time, at least, it's sort of worked out. Again, I'm sorry it was so long, but I thank you. xx

What makes me feel content at the moment is just sitting out near the garden and having coffee with my Mum. That's the only bit of life and light I can find at the moment. My treating drs used to tell me that I need to find something that I enjoy and makes me happy, but now "happiness" isn't good enough for them. I'm also dealing with Centrelink, and they don't seem to approve happiness

You mentioned starting to find my own voice and authentic self. Do you have any suggestions? I would love to be able to speak my mind like I do here or in my journals, but when it comes down to crunch time, I withdraw, nod, and say "ok". I've tried writing my thoughts out onto paper and getting people to read them but they either couldn't be bothered reading, or it's landed me in trouble. I'm never rude or disrespectful, but somehow peole always react negatively. Maybe I'm giving this information to the wrong people...? As for being my authentic self (I love that), I feel like most of me has died or parts are missing and stuck in time. The most I know at the moment is that I feel like I belong in Ravenclaw but instead was sorted into Slytherin (another fantasy reference, sorry. The theme for tonight must be fictional worlds).

My art has always been sort of on and off, touch and go. The only thing I seem to be able to do re: art is to open my book, grab my pacer pencil and then close the book again. I find it difficult to get past this point.

You know, you are the first person in months to ask me "Are you okay?" xx Thank you

I'd love to say that I'm starting to feel better, but truthfully I'm not doing very well at all, and it doesn't feel like it'll improve anytime soon. I feel hesitant about explaining the reasons to people because MI or anything "sad" makes them feel weird/scared(?), and based off my experiences, not everyone understands just how much it all means to me, and very few people truly love or care about their family. That being said...both of the "events" that happened earlier this year are related to some form of loss and mourning, and to family. The first was my sister and her kids moving to the other side of the country. I looked after her kids every day since they were born and I've always had a close connection and bond with them. To suddenly not have them around, it's hard. I'm thankful I can still fly over and visit, and we still have skype and a private facebook page that keeps us up to date. It's.. just not the same. It's quiet and empty and lonely.

The second happened 2 months ago, when my other half suddenly passed away without warning - and just so you know, my other half had fur and 4 legs. This has hit me so hard, my heart literally aches. For 16 years, she would always come and find me, and she knew when I was upset or hurting. Even when we were both in a bad mood, we would still sit together. When I try and explain that this is what 'love' is, that this is what it means to care, all I hear is "sorry your pet died, but it's just an animal". No, she was a beautiful little soul. My mum has said that "there's someone for everyone - and for some, that someone has fur and 4 legs". I lost my someone. She was small, but she filled a massive place in my heart and my life.

I'd better try and get some sleep before the sun rises. Thanks again for making me feel welcome and not so invisible. I'll never forget your kindness.

Goodnight x

-BB

My parents and I were often invisible when I was little. It can be horrible to be treated like dirt.We also fell through the cracks in the system .. I am just getting heard.

Sometimes when I was little I knew that others were shocked when we walked past in the street ... was it our clothing or our pain .. I wasnt sure then and have worked at it solidly all my life.

After my marriage I worked at isolating the issues .. and found that my confidence came back slowly on the phone wahen I wasnt getting the being looked up and down feeling.

I am an occasional bushwalker @500bluebirds .. but got sick of waiting to be invited and then pleasantly surprised a couple of years ago .. by "being noticed"... on the track .. it is really odd ... but just that little feeling of walking past a person and minimal smile, nod, or words of greeting, helped strengthen my sense of myself. Just trying to give and share ... take what is relevant to you. I have dealt with being invisible for a very long time .. I had to work it out recently, that a lady in my choir was actually smiling at me, as I kept thinking it was the person behind me .. but as I get older I am more accepting of that part of me and even see some advantages.

I dont have an addiction to getting a response from others .. where I see those who do .. and I see it as quite immature, when people are over 40.

Sometimes attention seeker types really tire people out .. and so more considerate people get appreciated ...I hope that happens to you one day.

the mainstream medical system .. is best for clear issues which have been identified .. but they are coming to new understandings of the body all the time .. even the old concept of genetics .. doesnt fit with the way they understand it today.

I love the concept of authentic self or voice too .. I hope you find yours .. i am not good at visual arts .. connected to all things about being seeing and being seen.

It is great that you love your family and enjoy your mother's company.

I have only been able to let my animals in close during the last 14 years. When animals are that important in our lives .. it is a genuine bereavement.

I just hope sharing and relating to others lifts some of the veil of being isolated.

Hi @500bluebirds,

I'm glad you decided to share your story with us here. You sound like an extremely intelligent person who has a lot of insight into your illness. You describe things very well..... it's just a hunch I have (and believe me, I am not an expert), but I feel you might have something going on with your physical health that has not yet been diagnosed. It certainly sounds that way to me, anyway.

Look, some doctors are just not very good. (You seem to have worked that out already!) You will have to push for referrals to specialists and do not take "no" for an answer. Do you always see the same G.P? Do you find that person to be supportive? Could you get a recommendation to see a new G.P. and can you ask around to find a G.P. who is really good?

I don't think all your physical symptoms should just be ignored.

I recently had an experience with my Dad where he was actually quite sick. His G.P. seemed to move very slowly and not rush in to do any tests. I was quite surprised that she didn't do more. My sister and my brother, who see my Dad all the time, thought that he only had a cold! I kept saying "No, he doesn't just have a cold. It's more than that. He souldn't be this unwell."

Finally he got a referral to a specialist and then I pushed to have him admitted to hospital. I had to be very firm with the specialist's office staff in order to have him admitted. Well, I was right; it turns out that my Dad is quite sick indeed! He is having treatment now.

@500bluebirds, do not ignore your intuition if your believe something is wrong. There is help out there but you will have to be your own advocate and push for answers. It seems like you have already done well, by telling your doctors your thoughts and getting treatment according to what you believe is wrong, not what they initially thought was wrong with you. Well done.

Hi again @500bluebirds,

I can absolutely relate to you saying that you feel invisible. I think a lot of people feel this way and it probably has a lot to do with lacking confidence.

When you really think about it, why should people in cafes, in the supermarket, in the park, etc, need to notice you? That would mean that they would need to notice everyone, wouldn't it? Or else other people would be left feeling invisible too. If everyone noticed everyone else all the time, then they would not have a chance to see where they were going and would trip over! Just a thought.

I think it matters more that you are important to yourself. Other people are generally busy thinking about themselves, not noticing everyone else. But if you are important to yourself and respect and like yourself then you will not need to be acknowledged by others quite so much.

When I was very depressed, even the people who I was very close to did not seem to notice. They were too absorbed in their own lives. I had to reach out and tell people exactly what was going on with me, or else they never would have worked it out. Even then, no-one really treated me any differently or asked if they could do anything to help. It was all up to me. I had to be the one to seek help and get treatment and look after myself. It was a lonely time.

The only time in my life when I have not felt basically invisible is when I was super-slim and took advantage of the situation to go out wearing miniskirts and makeup and plenty of jewellery! Then I actually got plenty of attention! But this really only goes to show how superficial our world is. People seem only to care about appearances. Sad but true.

Hi @500bluebirds

Im really glad that you posted here.

I have shared alot of your similar experiences with doctors.

Also,interesting,I also have Iron deficiency and Sleep Apnea.

Many doctors have cognitive thinking flaws and they dont want to do the "detective work" of solving hard "cases".

They get easily frustrated and then often blame the patient or contribute it to an ilness they already have (as you have experienced) or dismiss it as being part of a/their mental illness.This is the easy way out for them rather them admitting failure,or putting in extra effort by keeping up with latest journal articles etc.

There are good doctors out there who are simply time poor, but we cant neglect that there are also many that studied Medicine for the wrong reasons (prestige and money).

In addition,doctors are taught in Medical School to think very rigidly about illnesses and believe that certain things are absolute.

For example they are taught that Sleep Apnea is a disorder of Obesity so some doctors would flat out refuse to believe someone who's not overweight could have it.

However im reasonably thin and always had Sleep Apnea'(Obstructive type) even when weighing 50kg.

Personally,I think your wasting time with these doctors who are being dismissive and you might want to see someone else.

Or alternatively if you have a doctor who has good people skills,isn't arrogant and is open to suggestions then maybe you should "stick with them" but suggest what tests you would like done?

If you don't mind the questions,would you mind stating what nationality your background is from,do you have Chronic Gastritis (that is what i have preventing the absorbion of B12),have you had tests for B12 levels & Methylmalonic acid?

Is your Sleep Apnea Central Sleep Apnea or Obstructive Sleep Apnea?

What you mentioned regarding people getting smaller etc sounds possibly like something referred to as Alice In Wonderland Syndrome.

Have you been to an Opthamologist to get your Cornea and Retina checked?

You mentioned you were being monitored (half asssed) regarding Autoimmune Disorders-how did this come about?

Ie:did you have a positive Antinuclear Antibodies or DSDNA test?

Do you mind state any other positive tests results you have had?

Do you have any other symptoms such as headaches,Neuropathy,Tinnitus,previous Chest Infections or other infection etc?

Have you ever had a MRI to check regarding Arnold-Chiari malformation?

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@500bluebirds wrote:

Hi @Former-Member,

Thank you for your warm welcome.

I usually need a lot of time to sit and organise my thoughts, so it doesn't all come out in a waffley mess. So I'm really glad that this time, at least, it's sort of worked out. Again, I'm sorry it was so long, but I thank you. xx

What makes me feel content at the moment is just sitting out near the garden and having coffee with my Mum. That's the only bit of life and light I can find at the moment. My treating drs used to tell me that I need to find something that I enjoy and makes me happy, but now "happiness" isn't good enough for them. I'm also dealing with Centrelink, and they don't seem to approve happiness

You mentioned starting to find my own voice and authentic self. Do you have any suggestions? I would love to be able to speak my mind like I do here or in my journals, but when it comes down to crunch time, I withdraw, nod, and say "ok". I've tried writing my thoughts out onto paper and getting people to read them but they either couldn't be bothered reading, or it's landed me in trouble. I'm never rude or disrespectful, but somehow peole always react negatively. Maybe I'm giving this information to the wrong people...? As for being my authentic self (I love that), I feel like most of me has died or parts are missing and stuck in time. The most I know at the moment is that I feel like I belong in Ravenclaw but instead was sorted into Slytherin (another fantasy reference, sorry. The theme for tonight must be fictional worlds).

My art has always been sort of on and off, touch and go. The only thing I seem to be able to do re: art is to open my book, grab my pacer pencil and then close the book again. I find it difficult to get past this point.

You know, you are the first person in months to ask me "Are you okay?" xx Thank you

I'd love to say that I'm starting to feel better, but truthfully I'm not doing very well at all, and it doesn't feel like it'll improve anytime soon. I feel hesitant about explaining the reasons to people because MI or anything "sad" makes them feel weird/scared(?), and based off my experiences, not everyone understands just how much it all means to me, and very few people truly love or care about their family. That being said...both of the "events" that happened earlier this year are related to some form of loss and mourning, and to family. The first was my sister and her kids moving to the other side of the country. I looked after her kids every day since they were born and I've always had a close connection and bond with them. To suddenly not have them around, it's hard. I'm thankful I can still fly over and visit, and we still have skype and a private facebook page that keeps us up to date. It's.. just not the same. It's quiet and empty and lonely.

The second happened 2 months ago, when my other half suddenly passed away without warning - and just so you know, my other half had fur and 4 legs. This has hit me so hard, my heart literally aches. For 16 years, she would always come and find me, and she knew when I was upset or hurting. Even when we were both in a bad mood, we would still sit together. When I try and explain that this is what 'love' is, that this is what it means to care, all I hear is "sorry your pet died, but it's just an animal". No, she was a beautiful little soul. My mum has said that "there's someone for everyone - and for some, that someone has fur and 4 legs". I lost my someone. She was small, but she filled a massive place in my heart and my life.

I'd better try and get some sleep before the sun rises. Thanks again for making me feel welcome and not so invisible. I'll never forget your kindness.

Goodnight x

-BB

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Your welcome BB !!

Btw there is need to be sorry about writing a lengthy post- I just hope I can be of some help to you. We all need support in our lives.

I'm glad you have some peace and contentment in your life and that you have your mum in your life. I know its not easy to find happiness, and what gives me happiness is being comfortable in my own skin and having peace of mind.

I think defining your authentic self is difficult these days, where the terms gets thrown around by social media. I think its about being honest, self aware, becoming more humble and being able to take feedback from others too. It’s a hard, never ending process because your identity is constantly evolving. But the payoff is a happier, more creative self. And its about creating a life you really want and doing the things you value most. It is also about self discovery and doing what your passionate about.

I really hope you can get back into some art work and I know you struggle and that might be your mindset. I'm really passionate about sport and its taken me a while to get back into this and so I can really relate to your struggles with this.

I understand the events that have happened earlier in the year for you, I had similar experience when I was in High School because I have much older siblings. As my parents decided to move interstate away from my siblings including my nieces and nephew. So I truly understand how you feel because we were very close and it may take awhile to adjust.

And losing your other half that is hard and I know would have got a lot comfort from your dog and also would have a special connection and trust. I have a dog myself and she is more like my baby so I understand were you are coming from. Just remember all the good memories you have and cherish them and love and energy will live on through you.

Btw I have read some of the other posts to you, and they have offered some really good advice. I think seeing a general physician might be really good for you. You might need to prioritise what you want to do first and go from there and write some sort of plan for yourself.

I hope you will able to get some sleep and hopefully before the sunrise. Just keep believing in yourself.

Hope you have a good night. Best Wishes xox