The reality of being mentally ill and having an Undiagnosed Chronic Illness

Mental illnesses often go hand in hand with Chronic illnesses. It’s part of the territory. It makes a lot of sense really. Through all the fear, the confusion, the loss of life quality, friends, supporters. Having all of your peers move on with life, seeing them progress and there you are. Still sick. It makes sense that the majority of people with a chronic illness also have some sort of mental illness.

Having both anxiety, depression and at least one diagnosed chronic illness is a confusing situation to be in. It’s denying that your sick, feeling invalid because you don’t have a diagnosis but not being able to speak to doctors. Not having that magic way of talking to them to make them test you, diagnose you and take you seriously. And actually just freezing up and panicking every time you see one.

It’s feeling guilty for not working because you have a few good hours, days, maybe even a good week. But the reality is you’ve spent so long stuck in bed from grinding fatigue or unable to focus and be a good personality to work with from severe pain or nausea that you’ve fallen into an even deeper depression than you were in before hand.

It’s feeling like there’s no out because you don’t feel empowered to fix it, so it will never get fixed. It feels like your always going to be stuck in this cycle of physically ill, depressed, anxious, physically ill etc. It’s an incredibly terrifying point to reach. You know there’s something wrong with you every day and chances are it’s only dong to get worse because of your inability to do anything about it.

Which may be why you still find yourself denying it. Because you don’t want it to be true. You want a normal life. You want to be where your many a lost friends are now. Talented beyond belief with jobs they are actually getting successfully paid for. Friends to socialise with, a family they are close to and on track for a first class degree. But then you also don’t want to get better physically because being physically ill gives you an excuse. To not work, not do x,y or z. All of those things which trigger your anxiety. That historically you haven’t been able to cope with. Even if the main reason of not coping is chronic illness related. Things like applying for jobs give me so much anxiety that I can get interviews and then not go, not accept. Because what if I get the job and can’t manage or even worse what if I just sound like a fool and people question why I even bothered trying.

Having an undiagnosed illness and anxiety is having a history of not being believed, being called an attention seeker and so the second two friends say “Maybe she’s lying.” You worry there talking about you. Especially when it has seemed very off between the group of you over the last few months. With you being the outcast.

You feel like you have to act sick even more now. Or be really ill all the time to be justified. You fear your not sick enough and your just being weak and pathetic. Life turns into this ridiculous little merry go round.

You’ve had your trust broken so much, by so many that you’ve developed methods of isolation and telling yourself they don’t like you just to protect yourself from being hurt when they eventually snap and tell you everything they hate about you. Everything that’s wrong with you as a person. And that makes you feel more alone in this battle.

You have no one to open up to about your physical battles and internalising it all. Only having your irrational voice and you as your own cheerleader means the physical battles take all the more of a mental toll.

You question whether it’s just you. Or maybe daily pain is normal. You constantly fear judgement from other because your not good enough, not doing enough, not trying enough. And you feel like a poor excuse of a human. Your physically ill, but your not that physically ill and maybe your just making excuses.

Your left in a place of feeling completely and utterly alone. With no way to express how physically hurt you feel. Because physical pain has become the norm.

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The reality of Anxiety

I feel like not many people understand anxiety. The havoc it can wreck on someones life. How it leave someone feeling trapped. With no way out. No way to grow or succeed.

People also believe that when people with anxiety have panic attacks it’s obvious and shows physical signs. But not all people with anxiety do that. Some just go into themselves even more and panic internally. Panic attacks are not always obvious to the naked eye. So when someone opens up to you about something making them anxious please don’t underestimate this or not believe them just because they’re not showing stereotypical outward signs.

People can also get anxious about a variety of different things. So don’t judge if what makes them anxious seems mundane or even irrational to you. A lot of us with anxiety know we’re being irrational, but that part within us that is anxious is stronger than that.

My anxiety effects me so that I struggle to call people or even answer the phone. This has got a lot better over the years but still really effects me. Especially if it is to do with solving a problem. Problems involving phone confrontation keep on cropping up in my life as well. I recently allowed myself to lose over £1000 that I should have been paid because I was too anxious to phone or even email and deal with the stress of sorting it out. My doctors lost my new phone number and I was too anxious to phone and sort it out.

Both of these situations have huge consequences for me, my financial security and my mental and physical health.

My anxiety also effects me in other ways. Like not being able to stay in contact with friends, because I’m scared I annoy them. Not even being able to apply for jobs/scholarships because they need a reference.

Wimping out of going to interviews at the last minute. Not sending formative assessments to be marked. Having to get to places ridiculously early incase your late. The list of ways my anxiety has effected me could go on.

Anxiety is real and it is debilitating, this is something that everyone needs to understand. It is something to be taken seriously and not just brushed aside. If you have a loved one with anxiety you need to help support them through it. Help them manage and overcome it so they can live a more fulfilling life.

We need support,and sometimes we need others to do things for us because we’re unable ourselves.

To people who have never experienced the hardship of mental/chronic illnesses…

Please be kind, we are incredibly fragile people. We break easily. Both literally and metaphorically speaking. We need treating with care. Please remember this before you say anything judgemental.

Please don’t say any of the below list:

  • Why don’t you just try? – We are trying. So much more than you can see. Unfortunately, us spoonies have to try so hard just to appear as a normal functioning human being, so on some occasions our work may appear to be lacking.
  • But quitting’s a bit stupid/There’s no point in just giving up – No it’s not and yes there is a point. We need to prioritise our health in whatever way possible. This  may mean quitting a job  because it’s harming our mental health so much. Or taking a year out of college because we’re too physically ill to cope with the demands.
  • It’s not that hard really – Maybe not to you but for us it is. Remember we are different people, have different experiences and handle things differently. Yes you may find it easy to lead a group or socialise but for others of us leading a large group puts us on the brink of a mental breakdown and you’re not helping this with the constant criticism
  • Maybe it’s not the job it’s you – Thanks, just more reassurance that I’m a useless piece of crap that deserves no place in this world. Thanks.
  • Any judgement on why we don’t work etc. – Again, not helpful. Maybe put yourself in my shoes for once. Try spending 9 years of your life terrified your dying of a serious illness with no one to confide in, only to find what you likely have is lifelong, life damaging and can only be diagnosed through surgery. Having depression and anxiety with minimal support. Try self recovering from anorexia. Then see how much time you can allocate to a job on top of your study demands.
  • Just get on with it – Really? I am in severe pain, have a whole host of other symptoms and a lot of mental crap going on in my head on a regular basis and you’re telling me to just get on with it? I’m doing the best I can, and that’s all that should ever matter.
  • Why don’t you… “Go vegan” “Try Yoga” “take x,y,z” “get out more.” etc. I’m sure we’ve all heard all of this before. However kind of a place in you’re heart that these suggestions come from they really don’t help. Trust me a lot of us have tried it all so we don’t need your stereotypical suggestions. Unfortunately for a lot of us these suggestions will never fix us and only ever provide minimal relief.
  • Are you okay? – I guess it depends on how you say it and who you are with this one  because sometimes it can be a blessing, but with some people this just really bugs me. Like of course I’m not okay but I’m not going to open up to you when I either barley know you or you speak in that condescending way. On top of that it’s been so long now that I have a standardised yes response to most people, even when I’m in severe pain and it feels like the whole world is crashing down.
  • You’re a burden – Or anything that could have that effect. A burden is the last thing that we want to be. Don’t tell us this, please. It hurts so much.
  • You’re just doing it for attention – No we are not. This is real. Telling us we’re doing this for attention isn’t at all helpful it makes us doubt ourselves even more than we probably already do.
  • You need a hobby – You know what I agree, a proper hobby would be nice. A sport maybe. But the reality is for some of us, working full time or studying full time can take so much away from us that things we once enjoyed are slowly taken away and slowly become less and less frequent things to enjoy. There’s a long list of things I did but have ended up now not doing regularly because it either hurt too much or was too exhausting to carry out after the days commitments have been completed.

I’m sure there are a million more things that people shouldn’t say but will keep it to this for now. Just please even if you can’t empathise at all try and be a little more understanding of peoples individual circumstances. You never know the full story so try not to pass such judgement on their character or work ethic.

Dealing with guilt, feeling over privilaged.

Hello guys.

So lately that nasty little thing called comparison with others has started to creep in again, something major. And it’s creeped in, in many ways. One of those ways is in making me feel like I haven’t done enough with my life in the past. Haven’t been doing enough with my life over the Christmas break from uni.

And I’m not talking about not doing enough with my life in terms of creating new experiences but not doing enough in terms of not having a job and not earning money and never having had a job until 2 months ago. Even with a job now, the hours are so awkward and the location is so awkward in relation to where I live during term time that I struggle to find appropriate shifts that fit in with other commitments and mean I can get back without risking being murdered.

And all of this has lead to be feeling incredibly bad. People my age work crazy hours, somehow balance that with socialising and studying. I’ve worked two shifts in my life. And they were great experiences. One was fun, the other I cried but after that it got better. I just feel like I should be doing more. Yet at the end of the day I know my body can’t take more.

I pushed myself to the limit last term. I ended up getting 3 run of the mill illnesses in a week, the last week of term and so overly exhausted that my energy is only just back to a normal level of fatigue. Not to mention that I am chronically ill and on a bad day I find it nearly impossible to go to lectures and seminars and study from bed. I drag myself in, in comfy clothes and sit at the front near the door in case I need to leave to vomit or I get a bout of diarrhoea or I really urgently need to pee. I am silent and barley engaging my brain in seminars on days I am having a bad day, because I physically cannot. Let alone standing for 4+ hours at work. On a bad day, that is not going to happen. Yet if I had to cancel a shift because of that I would feel so bad, I would feel I had to push through it because that’s what people do. Because that’s what my parents do when they’re sick.

Then there’s the guilt of not having worked since I was 16. Yes I had a paper round until that point so it’s not that I’ve never worked as such… but I do feel like I’m overly privileged. In the sense that I don;t make my own money, but I have student finance and savings and occasionally my parents and other family members may help me out. So I live fairly comfortably without having to try. Without having to make my own living… and I feel bad about that… even though obviously there are reasons why I can’t 100% make a living.

First and foremost it’s that I’m a law student. Being a law student takes a lot of time, a lot of study, a lot of reading. And for any student, balancing a full time job and passing well would likely be near impossible. Secondly I have a chronic illness. I may not be diagnosed but there is something wrong with me. That means I fatigue easily, I have sometimes severe pain, I have nausea, bloating, diarrhoea, frequent and intense urges to urinate. Upon other symptoms. Obviously that limits me to some extent, fortunately not anywhere near as much to others who are chronically ill. And there were reasons why I didn’t work before hand, number one being it did not seem to matter however many jobs I applied for no one wanted me. I barley got any interviews. Secondly I was such a mess back then, mentally and also physically (I would say I was more physically ill then than I am now, in terms of how severe the symptoms were. They just weren’t as frequent.) I wouldn’t have lasted had a got a job. I was an anxious mess and then I was a depressed mess and then I had a flair up and my health really deteriorated and I relapsed into my eating disorder and decided I had to work on myself. At least until the ED related physical ill health was gone. And then exams came around and then no one wanted me for a summer job. So it’s not like I haven’t tried and not like had I not tried that I had no excuse. There were reasons.

But I still feel so bad about it, especially on days like the last few days where I’ve felt fairly healthy. Not totally healthy. But about the healthiest it gets for me right now and I feel like I could do everything, be some sort of superwoman and do it all… and then feel bad for not.

Does anyone else feel the same or has felt the same in the past? Or is it just me? With multiple mental illnesses that have still to be completely overcome along with an  chronic illness, not officially diagnosed, that makes this wonderful thing called life a very complex and confusing journey to say the least.

Understanding Emetophobia

Today I’m making a blog post about something slightly different than usual but something I have experience with and something which only recently I have not felt so alone with.

Emetophobia is a fear of vomiting which in some cases can be debilitating and always intervines with “normal life.”

I don’t know how long I’ve had emetophobia for, I think since the age of 10-11. Thats around when my earliest memories are, and by my earliest memories I ean my parents telling me I’m a horrible person because when someone in the family gets a stomach virus i turn into exactly that. A horrible person. I struggle to be in the house, I usually hide away at my nans. I’m scared to go to the bathroom, I actually have to hold my breath while I pee incase somehow I get sick from the sick person that was in the bathroom just from breathing in there. When soeone in my family is sick I tell them I want to kill them and that I hate them. I don’t go into the same room as them. I won’t touch any food that has been in said room because what if it’s been into contact.  still struggle to eat atall when someone else is sick although since being n recovery from anorexia I have been able to rationalise that a lot more.

I can only go out to eat somewhere or get a takeout if the food hygeine ratng is 4-5. The reason I didn’t go to my friends party last year was mainly because of that. The food hygeine of the place was 2 and I’d read reviews on trip advisor about rats and food poisoning and even though some of them we’re fairly old I couldn’t bring myself to go because what if I to got sick. Especially at a sleepover when  didn’t know two of the people. As someone with social anxiety aswell every part of me was saying no. Yet at the same time I felt incredible guilt.

I used to not be able eat rice because of something my food tech teacher said about how it could give you food poisoning. I would never order chicken in a restaurent because thats just asking for trouble. I could never eat anything past t’s best before date, even if n reality it was perfectly fine. And even now I still get anxious if I do happen to eat something past it’s best before date.

I remember when there was the norovirus outbreak on cruise ships in 2012/2013 and it terrified me because we were going on a mini criuse that may. This also happened to be around the time my eating disorder turned into anorexia and i reember no wanting to go for on this before because I’d get sick. I spent the whole wee
kend being scared I’d get sick or get fat.

I worry about the future because of this disorder

. I worry about getting cancer because chemo, I’m never going to get prgenant because morning sickness and what if the kid gets sick? I don’t drink because what if I’m sick?

I’ve never had any support foc95ecdb096dab3c49222efffed8c0e76r this disorder. Only misunderstanding and hate. y own parents tell me “I need to be locked up” and that ” need to stop being so horrible.” They tell me “I won’t beable to cope at uni.” So much that going to uni and living in halls terrifies me so much it actually puts me off of going because people will get sick and what if I don’t get allocated to an ensuite room and I have to share toilets? No one understands that I have a disorder, instead they just think I’m being silly. Or lazy or diffcult. Or just plain horrible. As my family does with all of my mental illnesses.

 

Was I lying to myself all along?

I pretended I was recovered, said I was recovered. But now, falling into a relapse and not knowing what to do I realise I never was recovered.

Even at my most recovered, even when I was happy. I still had those eating disordred thoughts. I still wouldnt touch pick and mix because god knows how many calories I’d be consuming. I still would have never dared to eat a pint of Ben and Jerrys. Thats atleast 1000 calories in icecream. Why would anyone who doesn’t want to get fat do that? 

Or atleast thats how my eating disorder feels about things and always has done. I’ve now realised I’m never going to get out of this rut alone. And alone I am. I have one friend who I’m not really sure is a friend anymore. It’s a one sided relationship. If she needs me I’m always there, I always offer my support. But when I need her… she’s never there.

To add that to a family who seems like they couldn’t care less with the one exception of my mum when I’m “too skinny.” Why would I recover? What good reason is there for it?

I’m not worth happiness because no one likes me, if no one likes me I must be a horrible person. And to add to that if mum only cares when I’m too skinny I must stay too skinny and get even skinnier because I have a desperate craving for love. To just be cared for just for once. For someone to hold me close and tell me it’ll all be okay. For people to notice how much I’m hurting on the inside…

Whats ridiculous is I know my thoughts are irrational, or atleast part of me does most of the time. I know 3800 calories across the week won’t have made me gain weight… but when I feel the fat on me… it’s hard to believe the rational part of my head. Problem is I bloat really easily and that makes everything about 1000x worse. I have ribs just about showing on my left side but then lower down I look pregnant. And my hips are huge. Like naturally, the bone, I want to get rid of it completley. I hate my figure.

I hate my womanly figure. And I’m not saying that because I have gender dysphora, because I identify as male. I don’t identify as male. Nor do I identify as female all the time. But thats not what this is about.

It’s about feeling alone. Not being accepted. And yes my sexuality and gender identity do not help these matters, but they are not the main issue. I had no gender identity issues when my eating disorder started, and sexuality wise, well it depends upon when my eating disorder started.  Was it at 7 when I first thought I was fat? Or 10 when I started skipping lunches, stopped having seconds of school dinners on fridays. Maybe it was  at 13 when I drank two bottles of water for lunch to fill me up because I got bullied for being fat? Or maybe it was when I was 15? When I actually started losing noticable amounts of weight.

Who knows really? I guess it’s open to interpretation.

All I know is that I never did really recover. I had no therapy so it’s no wonder really. And now here I am, stuck in a rut. Drowning.

What is a Restrictive Eating Disorder?

An eating disorder is the demon inside of you, the one that can’t be got rid of by exorsism or any other religious means.

It’s the voice that is trying to kill you.

It’s the control, for an out of control life.

It’s a voice that pretends to be a friend; lies to you – breaks you.

She takes away your Quality of life, she takes away what living truley is.

An eating disorder is a mental illness which consumes every thought.

She sends you panicking over weight gain, weight maintenance, weight lost. She sends you panicking over that number on the scales.

That number on the tape. You have a 26inch waist lets get it to 24, 23, 22, 21, 20…. She tells you  you can never be too skinny, she tells you you must lose more although not everyones eating disorder started because they wanted to lose weight.

It’s just that losing weight, the focus of losing weight. It distracts you from the problems in every day life. Soon starvation has a sense of euphoria associated with it, self destructive behaviours. Purging. You do them to cope with what’s going on with life, it isn’t really to lose weight. That’s just what she says.

If you do this, you will be beautiful.

Beautiful.

That’s one thing we all want. To be loved, to be beautiful to be accepted.

And that is what an eating disorder is. The demon inside you, the voice inside of you that promises all of these good things.

She makes you latch on to her grip, get deeper and deeper into it. You never realise that she is out to kill you.