University with a chronic illness

Having a chronic illness (or many) is hard, there’s no doubt about that. You basically become a full-time patient and very quickly realise you need to become better at advocating for yourself if you want professionals to treat you in the way that you deserve to be treated. Add the workload of a full-time degree course, and the whole social aspect of university then managing this becomes almost impossible. I’m going to share some tips that I’ve gained from my experiences and am trying to start applying to help me through my final 2 years.

  1. Make sure your tutors are aware – this was something I was told to do by a friend. It was something I always knew I had to do, I just kept on putting it off. Probably because of how awkward and pathetic it felt. Especially considering the undiagnosed nature of my conditions back then and because I have endometriosis and the nature of that alone can generate some unwanted responses. But actually, I was shocked by the responses I got showing genuine care and concern. And just letting people know really reduces the stress and pressure. (Serves me right for having no faith in humanity).
  2. If you can barely walk up the stairs without nearly passing out don’t attend your class – I still need to learn this, but once your in that state with fatigue nothing will go in. You’ll be spending your entire class trying to focus on just staying upright and not passing out. Nothing will make any sense and you’ll barely be able to keep up with note-taking. Most lectures are recorded now, it’s much more beneficial to stay at home in bed and go through the recording when you feel able.
  3. Register with your universities disability service – still not done this because I’m not 100% sure I’m officially diagnosed (was told I probably have CFS? Doesn’t sound official.) But do, even if it initially causes stress to get the evidence and such because they can provide you with support throughout your studies.
  4. Stay calm – you are doing the best you can. Maybe that’s not the brilliant first class marks you wish but you are fighting a hard battle no one knows. I promise you, you are doing enough, and being enough, even if you may get behind on or struggle with your work more than you would like.
  5. If you need to take a year out, go part-time, or drop out all together then there is no shame in that – your degree is not the be all and end all future success and a rewarding, enjoyable life. There’s so much more to life than the qualifications you’ve gained and the calibre of the career you hold. There’s love, happiness, travel, family. Even the simple things, like waking up in the morning to see the sun shining, gentle walks in the aforementioned sun.  There’s so much to life that doesn’t depend on your degree and at the end of the day, everyone will agree your health is far more important than an extra qualification.
  6. Your gonna have to miss out on certain social activities and networking activities and that’s okay – Uni is when FOMO his you hard, or the guilt over not committing to your future career as you should be and attending all possible networking events. It’s okay to miss things. It’s okay not to go to the pub regularly or go clubbing. It’s okay to not be heavily involved in clubs and society’s and it’s okay to not attend networking events. Again your health is so much more important. And being sick doesn’t mean you’re destined to having no social life. It just means that you need a quieter social life. The best friends are the ones who understand that.
  7. Take breaks – everyone needs study breaks. The brain can’t focus and absorb information when revising for more than an hour at a time. But this becomes even more important when you’re chronically ill, especially if you face fatigue and brain fog as a result of your illness. Yes, maybe you can “Push through”. But your time is going to be more effective and the information better absorbed if you take regular breaks. So take breaks when you feel the need and don’t feel guilty for needing more breaks than other people.

These are the tips I’ve come up with, if anyone else has others that may be helpful to people in this situation then, please comment and share.

The Difference between being Well and Chronically sick.

One of the biggest problems us Chronically ill face is the lack of understanding from those who don’t suffer the same afflictions. Which, I get it. You can’t understand something like this. Something that you’ve never been experienced before and sounds so alien from your healthy person life.

I feel one of the best ways to describe it is through Christine Miserandino’s Spoon theory. Unlike the average human being us chronically ill have a limited number of energy reserves or symptom tolerance in a day. And yes technically we can go over those in a day, but if we were to do that then it would leave us with less spoons for the next day or more. Until we were to just completely stop.

Image result for spoons

Now imagine each daily activity takes away a certain number of these spoons. Even the most simplest of them.

Lets start with getting out of bed. Yes even that takes spoons from us. Now lets think of taking a shower, that can also take a lot of spoons from the Chronically sick. Even more if we were to wash our hair, or shave at the same time.

Now you’ve got the gist of things you can see that even after completing tasks that are mindless or even refreshing to the average person we end up severely compromised.

When you have a chronic illness you are constantly fighting. Constantly pushing through relentless pain and fatigue. Not to mention the whole host of other symptoms that we can sometimes face with a chronic illness.

Yet most of us look perfectly healthy and able on the outside but please understand that this is not the case. Our body is fighting a war on the inside which is invisible to everyone looking from the outside.

This is why we may not want to socialise. It’s not even that we don’t want to. Mentally we probably do. Mentally we are probably bored of feeling physically capable of nothing. But physically we can’t do it and if we do it will just continue and heighten our daily suffering.

And we don’t want that. We don’t want to end up back at our worst for weeks or even months on end when we can prevent it. Most things in life are not worth that. Not atall. Related image

So please try to gain a little understanding before you judge us or frown upon out attitudes or work ethic. If we say no. Please don’t take it personally. It’s not you. It’s that our bodies are fighting a war that you could never understand.

We just don’t have the same unlimited number of spoons that the average healthy person has. We have a limited number.

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.