The Things I do Because of my Chronic Illnesses That are Often Misread

Sorry it’s been a bit radio silence here lately! I’m struggling with my ME and relying on adrenaline, caffeine, sugar and sheer necessity to get through everything I do. With feeling so god damn awful and trying to just carry on I thought I’d share some things I do because of my chronic illness.

1. Resting my head on the table or my knee whilst I handwrite notes or an exam – I started doing this at school when I was 10 and I always got told off for it. But it was just more comfortable like that. I didn’t know why at the time but as my symptoms have got worse I have realised it’s a thing I do to try and alleviate dizziness and head pressure and just keep going. Fun fact head on desk is how I got through my Land Law and Trusts Law exams.

2. Never having my feet on the floor and finding all manner of awkward positions to sit in so my feet are at hip height – helps with fatigue and dizziness and is just more comfortable.

3. Leaning against whatever there is to lean on

4. Constantly moving around if asked to sit/stand in one place – shifting weight and finding different positions helps with pain.

5. Working from bed or the sofa – I’m often dizzy and suffering from pressure in my head or I’m nauseous and in a lot of pain. My bed and the sofa both mean I can alternate sitting and laying.

6. Picking up my phone far too often when I’m meant to be working but my ME is causing severe head pressure and I just can’t concentrate – Really trying to cut the phone addiction. This doesn’t help I just am not good at sitting, or laying and blankly staring at what I’m meant to be doing.

7. Walking slowly – I’m sorry, I simply can’t keep up due to my pain and fatigue. Please be understanding if we are out together and walk at a pace I am able to manage on that day.

8. Grabbing hold of walls or using them to guide me I often get dizzy and go into pre-syncope. When my vision blurs due to this or I just feel unsteady on my feet I often use the walls to help me navigate my way to the bathroom or wherever in the house it is I’m going.

9. Taking my time when changing position (i.e laying to sitting and sitting to standing) – head pressure and dizziness is a bitch and it definitely gets worse when I change position.

These are just some of the things I do due to my symptoms that people may misread.

What do you do because of your chronic illness?

Step into my shoes: Growing up with chronic illness

Imagine being eight, going through a phase of constantly spraining your ankles in PE, your teachers not believing your in pain when you ask to sit out half way through for the 3rd week in a row. That started it, the belief that no one believes you, everyone thinks your a fraud. There can’t be something that wrong because if there was people would believe you.

Being nine and spraining more ankles and a wrist. Being told you can’t go horse-riding because you have an injury, albeit minor. That started the feeling that you should hide the pain because you didn’t want to miss out on the fun. Horse-riding was a passion at the time and the pain wasn’t that bad. For pain that wasn’t always going to be there when you rode it was worth pushing through.

Imagine being 11, running around in the playground getting a pain in your lower right abdomen. A pain that unknown to you at the time would plague the rest of your life. You’re scared, but feel unable to open up to your parents about it. You reach 12 and it gets worse. Your dad somehow reads your texts and says your telling your friends you feel unwell for attention. You ask to sit out of PE because the pain is beyond excruciating your scared you’ll die. The teacher doesn’t believe you. You try to play basketball despite, standing out hand on your lower right abdomen, leaning against the wall whenever possible. Because that teacher didn’t believe you, you don’t go to the medical room in the next class. You think they to won’t believe you. You internalise it even more. Hide the symptoms from parents and teachers even more.

More and more goes wrong with your body. Dizziness. Going from once being fit to struggling to walk up the stairs to your English class without feeling like you’ll pass out. Your knees hurt and you stop horse-riding. Between the abdominal pain and the knee pain from having feet in the stirrups it’s just too much.

At 14 you take ibuprofen into school, taking it every three hours instead of every four. Even then the abdominal pain rarely eases up.

The teachers think you don’t try hard enough. You should be getting better grades. But how from the ages of 11-16 do you pay attention in class when you are scared for your health but feel you have no where to turn. When the nausea and abdominal pain is distracting at best and excruciating at worst. When you are depressed, self harming and develop anorexia because you feel like no one understands you. No one is there for you and no one listens to you.

Doing your best isn’t killing yourself. It’s not pushing yourself unreasonably. It’s simply doing your best.

Maybe I should have been getting straight A’s but my circumstances meant I didn’t.

At 16 you develop ME, but it comes on so subtly. You start getting worse at climbing, cycling two minutes down the road makes your legs feel heavy and weak when previously you could easily do the entire paper round. The sore throat comes on and it never leaves, you feel tired and start falling asleep at 2pm over the summer holidays or fall asleep at 8pm in the middle of watching criminal minds. You’ve been busy. It’s nothing. You start college, the nausea gets worse, you feel tired but everyone’s tired. It’s nothing. That is until the dizziness and heart palpitations start, the fatigue hitting you like a ton of bricks at the beginning of second year. (Although not as bad as I am now). The doctors don’t know what’s wrong. They record a sitting heart rate of 135bpm but say you are just underweight. Hilariously you then relapse into anorexia, fall into an exercise addiction and push through injuries. You feel the PEM (albeit mild compared to todays PEM it was significant at the time). The what is now known as ME gets better but your abdomen and all those organs decide not to be okay. You lose weight after gaining back to a healthy weight. In pain. Nauseous. Bloated The doctor says It’s just stress.

That’s just a snapshot of life with chronic illness. We really need to start believing our young people. Really making our young people aware that we are there to listen and help. Not just stick to the standard “faking it, growing pains, stress, weight” reasons for symptoms out of the ordinary. I know had I been believed and had I felt loved and able to speak about my symptoms from the outset I would be a more confident person now. I wouldn’t have spent so much time so scared, thinking about what could be wrong with me and maybe I then would have got better grades.

The month of both excitement and tears

June feels like it’s flown by. I think that’s because I just haven’t stopped and if I have stopped it’s been because I’ve been so unwell that I’ve been unable to even watch TV.

June started with me with my family and ended with me back up north due to flat stuff. Moving out is not fun. But we move (Literally in 4 weeks from the day this will be posted). I definitely miss being home. Although my chronic illnesses are a lot worse and my family just don’t get it I’m finding it’s too quiet working from home on my own. I’m bored, not because I don’t have enough to do but because I need that stimulation of people (and dogs around). But the health benefits are certainly worth it. Lots of exciting law things happened this month. I got a video interview for my dream law firm (and then got rejected but we move).

I also got an interview for a scholarship I need which is at the end of July. The pressure is on because I need it but I’m excited. I also took part in Legal Cheeks virtual vacation scheme which helped me massively in determining what I want for career and in providing me with a network.

I really hope my luck in terms of interviews continues and I get some more interviews for my outstanding applications. If I don’t that’s also fine as I’m aware many firms have paused recruitment and it’s a difficult year. There is always next year.

My stomach eased up after I moved back to my apartment as it’s meant I can eat more flexibly and in a way that works for my body. My bladder on the other hand. I’ve spent the last week on antibiotics for a UTI that may or may not be there. It’s helped reduce the spasms but it’s still causing significant problems, especially if I dare drink more than one cup of coffee a day. I am at the moment whilst I’m trying to pursue law, trying to work my full time job and trying to sort out a job for August (I’m resigning it will be official by the time this is published).

My mum and nan are putting an awful lot of pressure on me about my decision. I’m leaving because I’m simply not well enough. I need to get my health back so although I’m looking for an ideally part time role my interest in something full time is limited to something of the dream job category. It will only be 5 months come resigning until I start my LPC so I reason if nothing I’m well enough for is available I will manage living with my parents and worst comes to worst just doing general CV bolstering activities.

There’s only so long you can push yourself for and although I am getting out of this ME flare, I think, Maybe that’s the adrenaline speaking, I need to place myself in the best position to excel in my LPC and go on to have a long career in law. I also need to recondition and doing that whilst working isn’t going well right now.

Passing out when trying to sit up after a laying down workout isn’t fun!

So that was June! How was the month for you?

More things I’ve done due to brain fog

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As I’ve got a busy and stressful week I thought I’d make a quicker easier post and that is more brain fog stories as I have plenty of stupid brain fog moments.

  • Forgetting my brothers name. Not just confusing the two but going completely blank and having to settle for child and then getting told off by mum because “he has a name”. I know he has a name but my brain was so dead in that moment it couldn’t figure the name out.
  • Calling dad mum and vise versa – I did it twice in one evening a couple of weeks ago
  • How do I make a bowl of oats?
  • Completely misspelling words so they end up jumbles of letters
  • Writing the opposite of what you intended
  • Confusing words and names starting with similar letters
  • Leaving house keys in the front door
  • Forgetting to go to the toilet – yes I often wonder around wondering what I got up to do, go sit down again and then remember
  • Looking for ice packs in the kitchen draws instead of the freezer
  • Difficulty safely navigating streets and crossing roads when walking – my brain just struggles to process all the movement around me which is why I’ve not learnt to drive yet.

I hope these events show you the ridiculous things brain fog does to us multiple times a day and is somewhat relatable and helpful in helping everyone with brain fog feel less useless and alone!

May was a Mess but that’s okay

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I quite like doing these monthly reviews so I think I’ll continue them as much as possible.  But May was a not very fun month. Fun things happened but my body definitely took the sacrifice until I found the d-ribose and the adrenaline I’m in right now. Yes I’m aware harnessing the adrenaline isn’t good ME management advice but I do what I do.

The beginning of May actually feels like a decade away right now but I decided to commit to an ME awareness daily photo challenge on Instagram which I actually completed, like what? Everyone who knows me knows I get to about day 15 of these challenges and give up. But with a lot of pre-preparation and sometimes posting two or three days in one I managed. When I could dedicate the physical and cognitive energy to photo taking I really enjoyed expressing my creativity and posting different content. But I also liked  how I could go through a wealth of photos on facebook, google photos, my phone and post old content if I didn’t have the energy or muse. There is now a picture of 9 year old me in a tree on Instagram (Where else would I be?).

I also got to see my family again and I am loving being fed and my dog and my fingerboard and there being a tree I can climb in my nans back garden. It’s probably not safe as it’s probably taller than a bouldering wall (getting down was terrifying) but my brother climbs it all the time and I’m competitive. Yes even against a 14 year old because if he’s better than me at anything he endlessly rubs it in.  Also trees and doorframes are all I can climb right now so if I’m in the vicinity of a tree and feeling vaguely well enough I will.

But my health was not vibing in May. In all the ways.

I spent the month a really not fun gastro flare because my body was like “Hi your doing too much for me to have the energy to digest food.” The only reason I’ve kept weight on is because my family feed me and eat the typical unhealthy westernised diet so the calorie density has been higher, especially with my evening meal. I’m really hoping my stomach works this month because I’m done with the agonising all consuming nausea but also scared of gaining weight. I weigh the least I have since a bad gastro flare four years ago and I weirdly feel worse about my body than I did at Christmas when I was heavier. But such is life. I can’t do huge amounts about it when living with my family. If I wasn’t working I’d make separate dinners for myself more but I really don’t have spare energy to cook and wash up the cooking every day or walk to Tesco and back for fruit whenever. My nausea is something I really should see a doctor over as even though I can’t commit to one end of the country I could atleast get some anti-emetics. Over the counter and herbal remedies are of really limited effect right now and no I can’t concentrate on my job effectively if the all consuming nausea hits. But I also can’t concentrate if I’m hungry so I can’t really win.

My bladder also waged a bit of war on me, although that’s been going on since before lockdown I found it more noticeable when trying to work. I should really see a doctor about that actually as it’s been really painful over the last few months but COVID and not being committal over staying in one part of the country.  It’s also kind of scaring me because from my limited none medically trained knowledge it sounds like I’m having retention issues which is a common EDS comorbidity.

I still have an elbow injury even though that’s had a lot more rest (Should really do something about it) and my LCL is still injured even though when I got it checked out I was told a month. That was three months ago. I hate it when medical professionals underestimate injuries because of a high pain tolerance or maybe I just heal slowly because of my EDS. Everything else that got injured during the same heel hook is better now though!

Migraines, pressure in the back of my head, migraine like headaches that aren’t actual migraines and pain in the rest of my body has been a constant battle. Yes another thing I should consult the GP about but I have 99 problems and I don’t know which to prioritise.

I was finding myself on the floor multiple times a day, although that did reduce at the end of the month by starting D-ribose and getting back on another supplement that I think I probably was on at some point but stopped because I couldn’t afford. It’s very weird living in an abelist family who don’t even believe that is a thing, collapsing multiple times a day but never in their sight or rarely because adrenaline is a wonderful thing. It’s honestly even more hilarious when your younger brother has issues with you not emptying the dishwasher and your dad gets in on the “Why can you do X but not Y?”

Especially when you can’t explain because they don’t let you get a word in and lets face it no one will ever understand ME until they have ME. No one will ever understand that yes I can do this thing but this thing makes me very dizzy and I have to work after lunch so no I can’t do this thing right now. I can do this thing but it’s unsafe for me as I often can’t feel my feet and am dizzy so if I am able to walk down the stairs carrying a hoover down and then hoovering the mess I made after exerting a lot of energy before now is something I need help with.

I did the hoovering. Not the carrying.

I feel like able bodied people also don’t understand that we’re allowed to have fun. And I’m not blaming my brother for his “Why can you climb a tree but not empty the dishwasher.”  But it’s something I’ve come across my other people who are old enough to educate themselves and allow themselves to be educated.

May also ended in a bit of a mental health crisis. I won’t go into details of why or what but it was terrifying, especially as I had been doing really well. Honestly if I had records of my recent anxiety and depression questionnaires I could prove it. (I have to do them before each therapy session.) But seriously being worse mentally, even if only for two days than you have been for two years is terrifying.

So May was not great but hopefully June will be better. On one of the last days of the Month I was able to walk for 10 minutes without too much PEM. Still some PEM but less.

I may go down to one post a week in June. It’s certainly not felt right to make two posts this week with everything going on. I’ve been sharing resources and info #blacklivesmatter related over on my IG stories @spoonielivingfree which will likely continue but writing a blog post on the matter when I can only come from my own white privileged view isn’t something that’s felt right. We need to share voices from black people without putting pressure on them to educate us. I may however write some criminal justice/sentencing pieces if I can find the energy although I’m not sure whether they’ll be posted here or somewhere else.

That was a tangent. But yeah, I’d like to do two posts if I can but it’s not something I’ll pressure myself to do!

How was May for you?

 

 

 

 

EDS Misconceptions

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Good afternoon, evening, morning. Thought I’d do a follow on from my h-EDS post by sharing some EDS misconceptions,

  1. You have to be flexible to have EDS No, although many people with EDS are flexible there is a difference between flexibility and hypermobility. Flexibility comes from the muscles, however hypermobility comes from joints and ligaments. As a lot of people with EDS find they’re muscles tighten to prevent dislocations they may not be flexible. Furthermore widespread hypermobility isn’t present in all  types of EDS. In vascular EDS the hypermobility is more in the hands and feet.
  2. You have to be severe to have EDS  No. EDS is a spectrum disorder. This means that although yes many people are severe and have multiple comorbidities it is not essential to be on the more severe end of the spectrum.
  3. You have to have a family member with EDS to have EDS No. Spontaneous mutations happen and the nature of awareness only recently increasing and many likely going undiagnosed in the past means that a family member may indeed have it but just isn’t diagnosed.
  4. You have to dislocate Mahoosive misconception. Some people only partially dislocate others don’t even do that.
  5. If you have high arches you don’t have EDS No – both flat feet and high arches are signs of EDS
  6. You have to have stretchy skin to have EDS – No No No No No. This is associated with the classical type more than other types although can be present in other types.
  7. EDS only affects the joints –  No just no. It affects skin, gums, the bladder, bowels, uterus, mast cells, stomach, uterus. Literally everything
  8. Exercise cures EDS Again no. For those who are able yes it can help but there are many with EDS who simply can’t be it due to the EDS itself or a comorbid condition.
  9. Everyone with EDS bruises easily No. Again this is just one symptom many with EDS experience, but not everyone.
  10. It’s just a name and it doesn’t matter what you call it No no no. EDS is often more respected by doctors than HSD or hypermobility syndrome or benign joint hypermobility. It matters.

 

The problem with Illness Bingos

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These bingos have been floating around Instagram for years, they’ve only recently popped back up into the stories of those whom I follow. Maybe due to pandemic caused boredom.

I find these bingos problematic, on many counts. Both the physical health ones and the mental health ones. This isn’t an attack on anyone I’ve seen doing them or anyone creating them because I’m sure many people don’t realise the issues with them. It’s just a harmless piece of fun right? Maybe… to you. But there are some real issues associated with them that I’d like to discuss.

With both the physical and mental health bingos create some sort of sick competition as to whose the sickest. Who can score the most with symptoms, treatments and comorbidities. There has been this toxic competition going round certain parts of the spoonie community before and it’s simply not okay. A place that many come to for support and a sense of community. A place that many people come to in order to feel less alone. It’s supposed to be a safe space and not a source of ones own illness imposter syndrome.

This can be even more damaging with the mental health bingos. It’s already common with mental illnesses for people to believe they’re not sick enough for treatment. These bingos make that worse.

Mental health bingos can also be hugely triggering, especially eating disorder bingos which often give ideas for behaviours that can be used or use numbers.

It hurts my heart to see these in the recovery community, where someone’s followers are often highly vulnerable.

The thing with Instagram and especially stories is that it’s hard to avoid taking in this information. Unless someone puts a trigger warning on before doing the bingo and you can then choose to click off of the story.

I know how hard that is when we have limited energy and when we may not realise the trigger as it doesn’t trigger us. But if you want to engage in these bingos I believe it’s the safest way to do so.

 

Hypermobile Ehlers-Danlos Syndrome

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It’s May. Which is apparently all of the awareness months. Feels like some sort of conspiracy to be honest. But one of those is Ehlers-Danlos awareness month. (EDS)

All forms of EDS are genetic disorders of the connective tissues. Connective tissue makes up pretty much everything in the body, other than the muscles which means the symptoms and signs can be prevalent throughout the body and there are a number of common comorbidities that arise.

I’ve recently been diagnosed with the Hypermobile type of EDS (h-EDS). And I’m still kind of in denial and maybe that’s because I’m not that bad. I’m not that hypermobile and I’m certainly not flexible because I have v tight muscles. I score 5 on the Beighton Scale, but also have hypermobile ankles, hips and shoulders and suspect my neck is hypermobile as I am getting more issues there. Weirdly I do partially dislocate parts of my body that aren’t hypermobile, but based on things that have been said to be by physios about how I stand and how that’s caused other issues, it’s likely I was in the past.

There’s no genetic test for h-EDS yet and diagnosis is made by ruling out other conditions including other forms of connective tissue disorder and EDS if you look like you may be a candidate for one of those diagnoses and by ticking a certain number of boxes based on hypermobility and wider manifestations of a connective tissue disorder. (Stretchy skin, velvety skin, Easy bruising, mitral valve prolapse etc) Family history and actually being symptomatic is also taken into consideration.

You don’t need family history to get diagnosed or even to have EDS as spontaneous mutations are possible, and it could be that previous family members are less effected than you or doctors just failed to diagnose them and that’s why there’s no family history.

I don’t have a diagnosed family members but I don’t think I’m a spontaneous mutation.

Denial or not a diagnosis of h-EDS explains my entire life. It explains the proprioception issues I have, it explains my bad handwriting. It explains why I went through I phase of spraining my ankles every two seconds and them not being the same since.

Me constantly having injured ankles was the first time I experienced people not believing me when I said I was in pain. I was 8 and my teachers believed I just wanted to sit out of PE. I see how that can be interpreted, especially when it happens week in and week out but that wasn’t the case. I actually loved PE, especially back then as I had friends to go with. But the impact of running wasn’t good on my ankles. My parents belived me at this point although they didn’t take me to a doctor and just said I’d sprained my ankle.

It explains the constant nausea I experienced since the age of 10 until I figured out how to cut things from my diet and control what I ate to manage it as best as possible. Now I’m able to start reintroducing things. The headaches, the knee pain caused by running and horseriding. I eventually quit horseriding because an hour of my feet in the stirrups was just so uncomfortable. Let alone two. The shoulder pain the hip pain.

I could go through my life bit by bit in order of what joint went wrong first.

I now have multiple daily subluxations (partial dislocations), many of which the outsider is unlikely to notice. They’re not all excruciating traumatic experiences. And often I hide it. No one wants me to share very single subluxations and I don’t have the time and energy for it. I fully dislocate less often but it happens and it hurts. My muscles tighten up to prevent these things from happening and that also hurts. I’m in daily widespread pain. I also suspect my bladder issues are EDS related and although they’re not bad by EDS standards it still hurts, and it’s a nightmare. I suspect I have retention issues and it means the more I need to go the less I can go. I have painful bladder spasms and get frequent UTI’s. I constantly need to go because I never get the feeling that I’ve emptied properly. I’ve also experienced incontinence which was embarrassing when I was younger. It has a very real effect on my life.

And that’s why we need awareness. Not just to the general public but also to medical professionals who still struggle to connect the dots. It takes a lot of emotional energy to go back and forth to the GP over what is often taken as 101 different symptoms. It’s exhausting to tell each new doctor the same story. It’s exhausting to get 101 referrals for all the issues you have, and that’s why I haven’t yet solved the entire puzzle.

I have so many symptoms that it’s simply overwhelming. We need allies, we need advocates we need doctors to stop putting it down to “growing pains” or some sort of hysteria or psychological distress.

We’re really sick, albeit at different levels of sick and the earlier the diagnosis the more chance of people not deteriorating as much as they otherwise would.

 

 

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 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.