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.

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.

I stopped exercising for 3 weeks and…

Hello beautiful angels who read my blog post. So the title gives this one away a little. My writings today will be about me stopping exercise for 3 weeks and the effects of that.

Now. Nothing drastic happened. I don’t think I’ve gained any weight and if I have my clothes still fit so who cares really. Basically I haven’t ballooned into some obese monstrosity, so if any of you feel you need a break from exercise for one reason or another please take it. It won’t kill you.

But onto the more negative stuff.

I ached A LOT! From head to toe all the time. As someone with a chronic illness I’m used to pain. I’m used to things hurting and as someone who has been stupid and overexercised in the past I’m used to the little niggling recurring injuries. But this was different. I feel like my body may have been punishing me for physically not having the time or spoons to exercise. Everything was also a lot tighter than usual. And I’m not saying I’m a flexible person. I’m far from it. But everything was noticeably tight.

Then I started exercising again because I had nothing else to do, so it was worth the spoons it takes and things started aching a lot less and feeling a lot less tight.

So I guess the point is that it’s always important to make time and spoons for exercise. i.e prioritising it over other things. I’m not talking about anything crazy intense here or anything that has to take up more than 10 minutes of your commitment 3-4 times a week. But apparently exercise really does help keep us as healthy as possible.

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.

Gaining Perspective, learning to go easy on myself while I can.

Hello, so frequent readers of my blog will know that I have recently been going through a lot of feelings of guilt, weakness and denial. But recently I feel I have found some perspective or atleast I am starting to get over those feelings for the time being.

I guess it comes from the perspective of others, and those others not being my parents. Whom are like they are and pushy like they are about certain things, one being me having a part time job and working that job regularly because they worry. And because they don’t understand. They don’t understand that I am chronically ill. Heck I don’t think they even know. I know I’ve never told them. And not only that- they don’t realise how full on being a law student is. Especially if a) you want a good degree classification and b) you’re not super intelligent. Yeah, life was all fun and games in first term. I did manage to study adequately and for the last couple of weeks of term, commit to rehearsals,  work a couple of shifts and socialise a lot. Yeah, I did push my body too far. I was so ill and my chronic illness was so bad, even for weeks after term ended but I did manage to do it all.

But now I’ve realised, and this is because I’ve realised if I do work, I need a new job. And all Other jobs will provide regular commitment of hours that it’s just not going to be practicable.Not for my health and not for my grades. More not for my grades to be honest. Because I am going to have to start revising for exams now, start making proper notes and taking things more seriously. Which takes up time, it means I do have to do some studying over the weekend, when before I had weekends free to netflix and chill or go on autumnal walks.

And for a while I beat myself up over that, beat myself up for taking the easy way out. But the reality of it is – as long as I stick to some sort of budget I don’t need the extra money this year. So why would I add the stress and strain of regular working hours on top of uni, drama (the love of my life) being chronically ill and maintaining a social life. I might look out for when uni are next recruiting student ambassadors so that way I can still have some income but until then. I will quite happily not work regularly and try not to feel shame for that.

Fact of the matter is I am a productive uni student, not the most productive but I am productive and I do try hard and work hard. So why should I feel guilty about not doing enough? When I do do enough.

That Little Thing Called Denial

Hello and welcome, readers of my blog.

Today I’m writing about that thing called denial. And how that thing called denial has come back into my life. With a vengence, if I may suggest. Just because I’ve learnt to control some of my symptoms and minimise them. As if the fact that the nausea,  diarrhoea and bloating have lessened somehow means I’m not chronically ill at all. Because the pain isn’t as constant as last month. There’s nothing wrong.

And of course that’s ridiculous. I know it is. Its not normal to be in the amount of pain I find myself in on an all too frequent basis. It’s not normal to not be able to eat before 9:30am at the earliest without risking feeling horrifically nauseous or possible diarrhoea. It’s not normal to bloat like I do. And urinating should not be painful atall, especially not to the extent it was this morning. Neither should having a bowel movement cause pain. Even down to being as fatigued as I am, and having the irregular periods I still have, despite having menstruated for over 8 years now.

So why so I do it? Why do I find myself denying that there is something wrong with me. Maybe it has something to do with how this has been my life for over 8 years now. To me this is normal. And yes certain things may or may not have got worse in that time, but I’ve got used to pain. I’ve got used to nausea, fatigue, bloating. The works. So for me that is normal. Which leads me to feel like I am now just moaning about nothing…

Or maybe because the condition I think I most probably have is endometriosis and maybe the fact that initially symptoms only presented themselves at a certain time of the month makes me again feel this is normal. This is just womans troubles which I cannot deal with… especially considering I’ve always had friends who have had cramps and nausea.

An alternate reason because there are a lot of people with chronic illness who are a lot more ill than me, and my brain seems to focus on that, rather than all the people who may have chronic illnesses and not be as ill as me.

Or maybe it’s a combination. And my brain. Being the mess it is seems to focus on why I may not be ill than all the many reasons as to why I certainly am ill and why I certainly need to fix it.

It’s one of those things I’ve got a lot better at ignoring and recognising when I’m doing it but it’s still hard not to feel that way atall.

 

 

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.