Hi, I don't think I belong here, but I don't know where to go. — Scope | Disability forum
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Hi, I don't think I belong here, but I don't know where to go.

Notquitedisabled Member Posts: 8 Listener
I have depression and anxiety, but I also feel strange, I've felt this way since I was a child. About seven years ago, I started to feel very strange. I honestly felt like I was sort of being drugged and also had the flu without any symptoms except brain fog, feeling distant, etc... I knew it wasn't "right" to feel like this. It wasn't an emotion, but I didn't know how to describe it.

I've been tired since I was 18, tired enough that it would impact my ability to do things like stay awake during the whole day more than two days in a row or hold a full-time job, but not nearly tired enough to have the symptoms of chronic fatigue syndrome. I tend to sleep 10-12 hours a day, or in shifts, and need sleep after several hours of activity. 

I can't stand without pain in my feet. They feel like their whole alignment is off and I'm standing on the wrong part of them. This started to happen when I was about 18. I wasn't born with flattened arches, I got them. Once a massage therapist did something that made my feet and my whole alignment feel right for a day, then it slid back into its old misaligned place. I lost contact with the masseuse. 

I have digestive problems and chronic loss of sensation in body parts on my skin, etc... poor balance, things like that.

For most of my adult life, I was morbidly obese. I am now just "moderately" obese. It's been VERY hard to keep weight off and Iv'e put more on during the pandemic. It's also hard because I can't exercise for long because I can't stand for too long or walk as much as I'd like, or run, etc...I thought my digestive problems would go away when I lost weight, and the foggy feeling might get better, and my feet would hurt less.

And it's made a little difference to my alignment problems and fatigue, but they are still there, and so are all the other problems.

I haven't been able to work in almost four years; I've only ever been able to work part time with depression. Everyone around me keeps telling I need "therapy," including doctors. I am more convinced than ever that they are wrong. I've had YEARS AND YEARS of therapy. I have lost weight. I don't eat dairy or much gluten. I take antidepressants (which help but much less than they used to). I am convinced my health problems, even depression, classified as a "mental" illness, are physical. Therefore, talking about them in therapy, fresh air and exercise, yoga, etc... are not going to cure them any more than they cure lupus or other diseases. They are not going to be hand-waved, slogan, Tony Robbins-ed, or instagram-filtered away.

What I'm looking for are other people who are taking matters into their own hands and getting results. Who are looking for actual answers or at least not gaslight me with "it's all in your head" or "if you just lost some weight" or "you seem fine to me," etc...

I have nowhere near the level of disability of many members of this forum. My health problems are internal mostly, invisible to the naked eye, and sort of...strange. I know something's wrong but I don't know how to articulate it. And when I try to, I feel I'm getting brushed off. 

My challenges are learning to accept my reality (an ongoing challenge), get over the bitterness, and seek actual help instead of the brush-offs I get from the medical establishment. Any suggestions are welcome, and I apologize if I had intruded into this forum inappropriately.


  • woodbine
    woodbine Community Co-Production Group Posts: 7,132 Disability Gamechanger
    edited August 2020
    Hi @Notquitedisabled great to meet you and welcome to scope where everybody is warmly welcome, my take on it is if your condition(s) impinge on your ability to lead a full and fulfilling life then you are disabled, being disabled is never a competition as in "i'm more disabled than you" its a fact.
    I won't pretend to have the answers to your problems but stick around as others may.
    Tke care.
    Be extra nice to new members.
  • Ross_Scope
    Ross_Scope Posts: 6,638

    Scope community team

    edited August 2020
    Hello @Notquitedisabled and a very warm welcome to the online community :) 

    As mentioned above by @woodbine, how disabled a person is or feels isn't a competition, we value users like yourself no matter what the circumstances are. This community is a very supportive and helpful place where anyone and everyone is welcome :) 

    I'm very sorry to hear about all the difficulties you've been going through, it must be very hard.

    Have you ever tried getting in contact with another masseur? It seems like massage therapy has been one of the things that had some kind of positive impact, even if it didn't last very long. 

    How many doctors have you seen about your conditions? It seems odd that they would just refer you for therapy, as there clearly does seem to be other symptoms involved. I would recommend possibly seeing a different GP or health professional in order to get a new opinion. 

    I'm sorry to hear that you have depression and anxiety and that the anti depressants don't do as good a job as they used to. This might be worth seeing your GP about as there may be another type of medication that will work better for you. Alternatively, if you feel as though you need further support Mind have a great resource on how to go about doing so. 

    I'm sure there will be more users who can advise better than myself on your circumstances and I hope that joining this community is the start of better things for you.
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  • Notquitedisabled
    Notquitedisabled Member Posts: 8 Listener
    edited August 2020
    Thank you for both of your kind replies. I think I WILL try to see another masseuse, or perhaps a chiropractor. It may sound weird, but it was only this week, as I was writing this, that I had the thought--why don't I do that, instead of trying to see another doctor or professional specialist who will look at my walking pattern and suggest orthotics? I have tried them, and I didn't find them helpful. Of course, maybe I didn't try for a long enough time or consistently enough.

    I have tried medication changes multiple times, and have been told my several psychiatrists that I should try therapy. The interesting thing about psych meds is I originally thought they were for "weak" people, like most people did back then. Once I tried them, it sort of was like understanding something I never had before. It was sort of like a person who is colorblind but doesn't know it, and who finally understands why sunsets are so great. This changed a lot of my thoughts on therapy's usefulness, though I've had lots of therapy both before and after I started taking medication decades ago.

    What I mean is that a lot of the deep sadness and emotional turmoil, well, when medication works, it can REALLY work. I had spent so long trying to work on the "deep issues," and being told by others that once I worked on the "real issues" that I would "deal" with them and "overcome" my need for medication. I now believe this is a form of denial about the reality that depression and other mental illnesses can be caused by health issues/imbalances, etc... In one sense all professionals talk about the "imbalance" aspect, but they still treat it as some sort of choice on some level, or something that can be healed with the mind. But most people don't think, say, that talk therapy cures broken legs, coronavirus, or other maladies. Yet when it comes to "mental" illness, there really is this idea that it can be talked away. What I have found is that when the actual cause of the mental illness, i.e., something physically based, is treated, therapy can be used for dealing with psychological issues rather than trying to get it to do something it can't, in my experience, which is treat mental illness.

    It doesn't seem strange to be ignored or treated with disdain by doctors. It happens often, especially if you are fat, or female, or whatever, even if the doctors are good people and not consciously trying to harm or deny patients treatment.

    One problem is that it can take me a long time to understand or express certain things clearly. I don't know why this is. So not only does the doctor have to respond, I have to be able to express the problem in a way that is clear to me and that they can understand, and this is, for whatever reason, a challenge for me, but I know many people with illness, even a short temporary one, can have this problem, like describing pain in a way that is clear.

    Another problem is following up with appointments. That's my depression and other "mental" issues at play. I am better at this, but it's still a challenge.

    I think of myself as ill rather than disabled, though I know some would say there isn't a difference. That's why I said I felt I was in the wrong place. Anyhow, thank you so much for the warm welcome and care. 
  • janer1967
    janer1967 Member Posts: 15,069 Disability Gamechanger
    Hi and welcome to the community, may I just make a suggestion, that before you go to see a GP that you write down all the things you want to get across as this may help at the time rather than having to think of them and missing out vital points. Also try and book a double appointment slot so you are not being rushed

    I hop0e you start to get some support and sure other members will have advice too

    Also you have come to the right place
  • Cher_Inactive
    Cher_Inactive Posts: 4,412

    Scope community team

    edited August 2020
    Hello @Notquitedisabled

    I think the masseuse idea is a good one.  Let us know how it goes after you book the appointment.  I have only had a massage a handful of times but each time I felt so much better, like I floated out of their building!

    I'm so sorry you are experiencing unhelpful responses from other people.  Although they mean well, words can sometimes make things worse as you feel people just don't get it.  

    Here at Scope we understand disability using the social model of disability and this views disability as something we experience on top of our impairment.  So in your experience the negative attitudes you have come up against could be an example of you being disabled by society. 

    Saying that, whichever way you want to define yourself is up to you and you are always welcome here.  How are you doing today?
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  • male45
    male45 Member Posts: 312 Pioneering
    Welcome to the community.

    Hello there..how are you today? 
    It must be very difficult to come on here amd explain how you are and what has been happening with you.
    But you have and that is a good start.
    Talking about yourself to strangers is not easy. So thank you  for doing so here.

    I've read all you've said and the great responses you've received. 
    Its good you said you will try massage again as that helped before.  What else have you tried before that you've felt good about.

    I acknowledge that it can be very difficult and confusing when trying to explain whats going on within your mind amd body. If we were all drs we'd cure ourselves eh.

    You have told us a good amount about yourself here, but would it be OK if I asked you to tell us about your home life..if you live alone, have family and or friends that you can call on when you're feeling low?

    Have you ever had feelings that are so low that you feel whats the point of life?   If so what do you do to lift yourself out of those feelings?
    Have you ever phoned any helplines?

    I'm sorry for asking so many questions, I just want you to know that this is a safe confidential  place where you can feel at ease and allow your thoughts and feelings to be explored. 
    You control what you want the community  to know and if at any time you want a break just say but do keep in touch to let us know how you are if only just to pop in and say hello.
    If you look around the forum you can find other threads which you can join in and you can even make your own topic. 
    Please do remember  you are not alone

    Best Wishes 
  • Notquitedisabled
    Notquitedisabled Member Posts: 8 Listener
    edited August 2020
    Thank you again for replying and for suggestions. I admit it is hard a lot of the time, but I've been helped with the supplement I'm taking. I do have a support network, but it is stretched thinner than it was a decade ago. I have tried helplines but usually find them depressing and alienating. One of the hard things is dealing with the shame, the sense of worthlessness, etc.. 

    Acceptance is hard. I still keep thinking that things should be different. I shouldn't be experiencing what I'm experiencing. Because I regularly feel drugged and strange, I KNOW I can't "think" or "yoga" or "therapy" my way out of that (and no, I don't think it's a medication side effect. Medication just made the strange feeling less pronounced, i.e., I felt more normal or at least a bit closer to it). I know that. I know I didn't ask to be so tired it's impacted my ability to work full time or even enjoy my day fully without feeling cheated because I have to nap for several hours. Etc... I know this. Yet I still feel, that I can 'think' it away. This is what everyone around me tells me. Or that it's 'mental illness,' which it partly IS, but it's partly that 'mental illness' is an incomplete way of describing what's happening that doesn't work fully anymore.

    What's helped was reading the book, "Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed and Sick," by Maya Dusenberry. It was a very, very painful read, but it was filled with so many women who had been told by medical professionals AND the people around them sometimes, both male and female, "it's in your head/ have you tried yoga/you feel this way because you were molested as a child/ you're just stressed/ you're a hypochondriac/ you're lying for attention/ are you eating fresh vegetables/ the illness is real but you're creating it with your mind/ etc..." 

    The book, "Sick: A Memoir," by Porochista Khakpour was also helpful. She has late-stage lyme, and much of her adult life was spent dealing with it before she knew she had it, trying to make sense of it, being turned away by doctors and ignored, getting better and worse and not understanding what was happening, thinking it was in her head, having psychological and physical symptom...essentially having something that was hard to define that was affecting her life in a way that was sometimes so subtle it couldn't be clearly felt--but which wouldn't go away no matter how much the medical professionals around her believed it didn't exist or that her body was being annoying and difficult and she should go away instead of being a difficult and annoying patient.

    So I KNOW this. No one is supposed to feel hung over all the time or drugged or need to sleep a few hours after waking up. And yet. I just really treat it as a personal failing, as an attitude problem, a choice. Something I did. It's different than the depression, because with depression, I've found I don't think I'm depressed, I just think I'm a horrible worthless person and can't do anything right. But these non-emotional symptoms--well, it's obvious that they're not a choice. And yet. So I keep trying to remind myself that I didn't choose this, I didn't think myself into it or ask for it, and that while I can keep seeking help, I don't control it or whether it heals up. 

    Anyhow, I DO have people I can call, and I am definitely loved, but there is only so much they can give me. Talking to professional therapists and helplines in the last 8 years, when it got real bad, has usually been depressing and alienating. 

    Since I changed my medication about 5 years ago, it's not as bad as it used to be. Well that was a longer ramble than expected. I will explore this forum more. Thank you!!!

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    That sounds like a really interesting book @Notquitedisabled! I'll have to read it. Just wanted to check in to see how you are doing. :)

  • Cress
    Cress Member Posts: 1,012 Pioneering
    Sorry to hear your struggling @Notquitedisabled .
    I'm certainly not able to give you any advice ...but I was just struck by you describing a strangeness and a fog..and feeling distant etc.
    I wondered if anyone had ever looked into the possibility of epilepsy? 
    My son has temporal lobe epilepsy and after reading about it myself, I just noticed some similarities with what you describe.
    Sorry, dont know if it has been mentioned I haven't read the whole thread as I say I was just struck by your opening words...
    Hope you find some answers anyway....
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    edited August 2020
    Hi @Notquitedisabled - just to say, I feel a disability is something which dis-ables you in whatever form it takes. I also feel that a person knows their own body better than anyone, & knows when something isn't as it should be. You are the expert in this; it's finding someone in the medical profession who can work out what your problems are. Sometimes the difficulty may be that a person could do with several specialists together in a room discussing their problems. This unfortunately doesn't happen, & I also feel you might see a 'top' specialist, who knows an awful lot about their speciality, but can't see beyond that.  
    I think the 'imbalance' aspect might be right, in that when our bodies are not working correctly, it can affect both physical & mental health rather unsurprisingly. You've probably heard about 'homeostasis'.....the body does need to be in balance to work most effectively. If it's not, it lets you know.
    I don't want to make a wild generalisation that women fare worse than men with health care, but it does seem we're sometimes sadly disbelieved, or perhaps women see their GPs, etc. more than men?
    You are not failing; rather than your Drs have failed to diagnose you as yet. Again, I don't want to make a generalisation, but I think it often happens that getting your symptoms/problems validated can help.
    You are the 2nd person who has recommended Maya Dusenberry's book 'Doing Harm....' very recently, thank you.
    Please let us know how you're getting on in finding out about your problems. My best wishes. :)
  • Notquitedisabled
    Notquitedisabled Member Posts: 8 Listener
    edited August 2020
    Thank you Chloe, Cress and Chiarieds. I have never had a seizure, and taking supplements on top of psych meds have helped reduce some of the symptoms. While I could be wrong, I don't think it's epilepsy.

    I think anyone can be ignored or denied treatment by the medical establishment, regardless of sex, race, etc... However, women get lesser treatment as a general rule. Often, individual doctors are not sitting there gleefully rubbing their hands together and thinking, "Ha ha! I can't wait to deny adequate treatment to this patient because I don't like their sex/race/orientation/etc..." It's more often that they're thinking, "This young woman is stressed. She looks healthy and attractive to me, so it's stress," or "This old woman is a malingerer seeking attention," or "She is a drug-seeker and can't really be in the amount of pain she says she is," etc...  

  • Cress
    Cress Member Posts: 1,012 Pioneering
    Hi @Notquitedisabled just to say...
    With temporal lobe epilepsy you can just suffer what is called the aura and not go into what is typically thought of as a seizure,  jerking, twitching etc. 
    It's quite interesting, in the past many people who were thought to be "mad" having hallucinations insisting they'd seen god etc are now actually thought to have been experiencing the aura stage of temporal lobe epilepsy.
    Some people just have odd feelings of strangeness that they cant describe and feelings of depression dejavu (sp) followed by extreme tiredness....
    But having now read through the thread, then no, probably not.
    Good luck anyway for the future...
  • Notquitedisabled
    Notquitedisabled Member Posts: 8 Listener
    Yes @Cress, this does not seem to be the case for me. But thank you for sharing the information. On the one hand, it's extremely annoying (as I'm sure you and many others with chronic illness or disability agree) to be asked, "have you tried..." or "could it be..." over and over. On the other hand, one never knows what piece of information might be helpful. Thank you for reaching out.

  • newborn
    newborn Member Posts: 741 Pioneering
    O.p. can you look up the summary of the Baroness Cumbernauld report, recently published.  You will be interested, and validated.  I haven't  read it, but heard her on BBC radio, and  much of what you say, regarding  medical attitude to women, is almost word for word what she concluded,  after a lifetime of investigations and finally two years of concentrating  on two specific aspects.
  • Notquitedisabled
    Notquitedisabled Member Posts: 8 Listener
    @newborn thank you for the resource. I probably won't read the report, because my energy is limited and I already read a whole book on the subject. The main reason I read, "Doing Harm: The Truth About How Bad Medicine And Lazy Science Leave Women Dismissed, Misdiagnosed And Sick," by Maya Dusenberry, was to, well, to help myself.

    One of the main things I got from the book was, "Don't give up. You're not crazy." Meaning don't stop seeking healing, and stop wasting time with people who want to convince me I'm misunderstanding that I have a health problem or that it is a problem of perception rather than an actual problem that I am accurately perceiving.

    It also helped me not feel so alone and not take things so personally. It helped me stop feeling like I was/am personally a failure for experiencing illness I don't understand and have not found a solution for. The book made me enraged and sad, and was a very painful reminder of POWERLESS I really am, but it also helped me see that I wasn't alone in suffering, limitations and mistreatment, I am not an aberration in dealing with illness, etc...

    But maybe I will check out her name. Thanks again for the resource.
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Thank you for sharing this with us @Notquitedisabled, it sounds like a really interesting read!


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