Why I choose to be open about my illness

Health is viewed as something that should remain private, something between yourself and your doctor. I understand why people are taken aback by how open I am about my illness. After all, writing about the intricate details of your illness for anyone in the world to read is almost unheard of.

At first, being open wasn’t an option, everything was to remain private, with the exception of family and close friends. My father, who has the same illnesses, is notoriously private about his health. In fact, he only started to talk about his health with me, when I was facing the same fate. Not hearing him speak of his illnesses became normal to me, I thought that was how you were to handle having a chronic illness. And, that is partly why I decided remaining private was the best decision.

At the start, there was nothing to indicate that I was poorly, only a bright red rash on my right cheek. But as the months went on, I grew pale and I looked exhausted. A picture of my cousin and I was taken, it was my first experience of using make-up to hide my illness. I thought I made myself look how I wanted: well. Later that night, I saw my mum looking at the picture and she had a sad expression on her face. She looked up at me and said “you look poorly, it’s your eyes”. I brushed it off, thinking I did a good job at hiding how I felt, but I recently looked at the picture and she was right, I looked poorly. It was all in my eyes, they looked glazed, almost like I wasn’t there. I guess the saying ‘eyes don’t lie’ is true. The picture, for those who don’t know me, I’m in the pink cardigan.

People had started to realise something was amiss, I was no longer seen out and about. For months, I was shrouded in the same four walls in a zombie like state. But, when I was seen people would ask “are you OK?” and all I could reply was “I’m being tested for Lupus”. I could see the confusion in their faces and I was already being asked “what’s that?” at that stage. My GP told me to prepare myself for a Lupus diagnosis, and at first, I didn’t. For a time, I would lay in bed and think “like hell I have an incurable illness”…that’s something people call denial. Due to my acute denial, I didn’t research it, so I didn’t have a solid answer to give.

The consultant turned to me, looking serious and said “you have Systemic Lupus Erythematosus”. I didn’t have an “oh shit, it IS Lupus” moment, I reacted like someone had told me I had a cold. People still asked how I was doing, but I could no longer say I was being tested for Lupus. Plus, I wanted to keep it private so I just said “I’m getting there” when I wasn’t ‘getting there’ at all.

The questioning was a regular occurrence, so I did something that started a domino effect that would eventually lead to this blog. I wrote on Facebook that I had been undergoing testing for Lupus and I had received a diagnosis. The “how’re you?” questions were replaced with “what is Lupus?”. By this time, I had researched it and I could give a clear answer. My explanation became a monologue, it sounded as if I had stood in front of a mirror, rehearsing it over and over. I would find myself explaining it to the same person multiple times.

I’d wonder why nobody could understand it and why they were so fascinated by it. Then it dawned on me, I’m describing a serious illness but I look healthy, they couldn’t fathom it. I decided it was out of the ordinary and that’s why it was so fascinating. It’s a fascinating illness, you could research it for several hours and still be uncovering the layers of it.

The idea of a blog would surface in my mind numerous times but fear stopped me. I was petrified of being judged for something beyond my control. I’ve realised people become very judgemental when it comes to topics they know very little about. However, I realised that if I wrote about it, would people learn? Would they understand my illness? I asked myself, do you really want to share your journey with Lupus? My instant thought was no, but if I did, it could make a difference. I downloaded WordPress but the app remained untouched for a couple of weeks.

Whilst watching TV, I spontaneously opened the app and tapped the sign up button. It asked what I’d like to call my blog, it took me less that 2 minutes to decide a name. I went with the first one that came into my mind: Me, Myself and Lupus. I didn’t take my blog seriously at first, after all, I was only treading the waters of blogging to see if I’d take a liking to it. I started writing my first blog post: My Diagnosis Story. It’s a post I regret, I don’t regret sharing it, it’s a post I would have wrote regardless. My diagnosis was a pivotal moment in my life, it’s a story that I could and should have put more effort into, but I didn’t and that’s what I regret. I published it and shared it on Twitter. I wasn’t ready to share with my Facebook friends.

I realised I liked writing, it proved to be threaputic to me. I started to take my blog seriously. I logged on and picked a theme, I chose a font, added a profile picture and chose a colour scheme. I learnt how to make banners and logos, I spent a few hours on the appearance. I wrote a few more posts, still only sharing to Twitter. During Lupus Awareness Month, I decided it was time to share my blog to Facebook. I was nervous, it’s easier to share the details of your illness with strangers, they don’t know you and they will never see you. I was blown away by the response and the amount of support I received regarding it. It propelled me into writing more.

Writing is now a big part of my life, a love I didn’t know I had. I love my corner of the internet, it’s my space to freely write what I like. Not every aspect of my illness is documented here, there’s some parts I keep private. Making my journey with Lupus a public one wasn’t an easy decision but it’s one I don’t regret.

The people who asked are no longer asking and they have a basic understanding. I have had thank you messages, it has made other sufferers realise they aren’t alone. I’ve had thank you messages from people who just wanted to learn. My blog has been shared by Lupus UK. It has helped and that’s exactly what it was set up for. Lupus still has very little awareness and it’s for that reason, I won’t stop sharing my journey. It’s a helter skelter of a journey, and you’re more than welcome to join me.

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Anxiety: the side affects of steroids they don’t tell you about.

Steroids are a miracle medication but 3 weeks into taking them, I now realise why people despise being on them. They come with unwanted and unpleasant side affects, and side affects can appear at random times – even if you have been taking them for weeks to months. Over the weekend, I was plunged into the side affect nobody talks or warns you about: anxiety.

Before I go on, because this is important to note – a couple of years before being diagnosed with Lupus, I was diagnosed with anxiety. This is usually controlled by slow release medication (propranolol).

I lowered my dose from 15mg to 10mg on Friday 18th May. I thought of this as a happy occasion. To me, it meant my time on steroids was decreasing. The weekend was quickly passing but my anxiety levels were quickly heightening. At this point, I could handle it by distracting myself with various activities.

However, Monday ran an entirely different course than the weekend. My heart was racing, I had butterflies in my stomach and a feeling of impending doom. My breathing would become heavy at random points throughout the day. During these attacks, I couldn’t sit still, I paced the living room with my racing heart and I began to get hot and clammy. I guess you could say these were panic attacks and they happened regularly throughout the day. When I wasn’t in a panic attack, I sat with the churning feeling and thoughts that something terrible was going to happen. At night, these feelings and attacks increased. I would lay in bed to fall asleep and it would start again, I’d sit up like it was an involuntary action. I started to feel mentally tormented and at some point in an attack, I bit the inside of my cheek and drew blood.

Realising this wasn’t normal for me, I put 2+2 together. I grabbed my phone and asked on Twitter if anyone had experiences of anxiety whilst taking steroids. 14 people replied to me and each person had experienced it, some saying they can’t take steroids anymore because of it. Someone told me if you have a history of anxiety, you’re more than likely to experience this side affect. I laid back down and I could hear the faint mumbling of my brothers TV. I turned my fan off so I could hear it better, hearing and knowing my brother was in the next room made me feel safe enough to sleep.

Tuesday went the same as the previous day. But by now, I was almost hugging myself. Hearing the cars outside put me on edge and I jumped at the door being knocked on. I looked at my steroids and walked away, I couldn’t bare the thought of taking them, knowing they were the cause of intense anxiety. Mum came home from work and I finally told her how I felt, she remarked how I looked on edge and anxious. I hadn’t eaten a thing all day but I knew in a few hours I’ll be taking my usual meds so I needed food. I had to force the meal down. As my bath was running, I held my hand out and it was trembling. Whilst in the bath I decided it was best that I saw the doctor the next day. I went to bed, this time bringing my dog for comfort. He must of sensed something was amiss because he slowly crept up to me, gave me a shower of kisses and slept by my side all night. I don’t care what anyone says, dogs bring a level of comfort and calm that’s hard to replicate. Knowing I had to take the steroids at some point, I took them right before I fell asleep.

I went to the doctor and told him everything. He said, because of the timing of reducing the dose and the anxiety starting, it’s most likely the steroids. He explained that steroids can cause mental disturbances. I asked, because the dose being only 10mg, if I could just stop them that day. He said if I stopped them without weaning, I’d end up in hospital. He emailed my consultant for advice on what to do, listing everything I had said and also stating I have a history of anxiety. I had to leave and wait for the GP to call me with what my consultant replied. I came home and tried to distract myself with various activities but not a lot worked.

I received the call today with what my consultant suggests. The weaning process has been sped up, I have to continue taking 10mg for the rest of the week. I will then reduce down to 5mg for a further week and then I’ll be free of the wretched things. My consultant is positive I’ll return to my normal self after the weaning process.

Everyone knows how steroids can physically affect you, weight gain and puffy face etc. But, it’s almost like you have to discover these hidden side affects for yourself. Nobody talks or warns you about this side of steroids, which is what prompted this post. If someone is on steroids and going through this, I hope they stumble across this post and realise it’s common but hardly spoken about.

In previous posts, I remarked how I didn’t think steroids were bad. However, I would now describe them as mental poison. I have felt nothing but dread and fear. This experience has restored my fear in steroids, there’s not a chance in hell that I would take them again.

Steroids: what are they like?

I’m nearly at the end of my first week on steroids, it’s time to give my initial thoughts on the dreaded medication. When I initially started them, I spoke to a few people in the chronically ill community about their experiences with steroids. There wasn’t one person who wanted to be on them, despite knowing they would help. Steroids work by reducing inflammation and they also suppress the immune system – which is why they are commonly used for auto immune diseases.

Steroids tend to raise the level of glucose and sugar in the blood and they also cause an insatiable appetite – those combined can lead to the side affect that nobody wants: weight gain. I’m being strict with what I consume, carbohydrates turn into sugar, so anything with a high carb content has been eradicated from my diet. The only carbohydrates I eat is what naturally occurs in fruit and vegetables. I have significantly upped the amount of protein I eat too. It’s a complete change around for my diet, I usually consume more carbs than I do protein. Despite constantly feeling hungry, I haven’t caved to it yet. I ignore the hunger pangs and only eat at meal times…I guess that’s where being stubborn comes in handy. Out of everything I’m used to eating, all I miss is a cup of tea with one sugar and a handful of biscuits.

However, I am suffering from two side affects. The steroids are making my body temperature rise and I feel unbearable hot, this mostly happens at night but it has occurred in the day time too. The second side affect is disrupted sleep (as if my sleep couldn’t be anymore disrupted), I definitely think the body temperature has a part to play in this too. I constantly wake up through the night or it takes me hours to settle down and sleep. That being said, I’d rather have those two side affects than any others.

Despite having disrupted sleep, the steroids have worked wonders for fatigue. I seem to be able to do a little more in the day time. Not only that, but I can concentrate on things better and my brain fog isn’t as bad. However by late afternoon I start to become tired again, but it’s probably down to me taking advantage of not being so fatigued. I’m still having joint pain, but it’s not as constant and it usually starts in the early afternoon and it intensifies a little by early evening. The steroids haven’t worked for my headaches yet, but whilst reading the side affects, it said they can cause them – so I’m not entirely sure if it’s a side affect or lupus.

I would say that so far, the only great improvement I feel is the fatigue. Which is okay with me, fatigue is a symptom I can’t stand or get used to. If my consultant decided to keep me on the steroids for longer than expected, I wouldn’t complain for this reason. But, there’s still time for the steroids to start taking affect on the other symptoms – time will tell. My recent blood tests show that my neutrophil level is still low, so I still don’t have a clear idea of how long I’ll be on steroids.

I’m (reluctantly) on steroids.

The break from Azathioprine continues, if I’m honest, it’s lasted much longer than I had anticipated. And, to be frank, it’s been an utter nightmare. It feels as if nobody is communicating with each other, it’s almost like they have no idea what’s happening with my treatment plan.

My Lupus nurse called me on Monday 23rd April, to tell me I had to stop Azathioprine (by this point, I’ve been off the medication for 2 weeks). She told me that my white blood cells have returned to a normal level, but my neutrophil level remains low. She said she was going to talk to my consultant about restarting Azathioprine and that she would call me back in a few days. By the Friday afternoon, I hadn’t received a call which prompted me to call her – it went to her answering machine.

Wednesday 2nd May: there still was no call back from my Lupus nurse. I tried to contact her again. It went to her answering machine but this time there was a message alerting me that she was on annual leave until next week. To get a message to my consultant, I next tried calling his secretary and hallelujah, she answered! I had to tell her the full story: no Azathioprine and how long I’ve been off it, low white cells and neutrophils, frequent blood tests, Lupus nurse called and then didn’t call back and finally that my symptoms are progressively worsening from being under medicated. She noted everything I said and told me she would speak to the consultant and call me back.

Whilst I was waiting for the call back, I logged into my patient access app and looked back at my neutrophil results from past to present. I realised they’ve been low before and fluctuate quite frequently:

Due to this realisation, I was getting pretty cocky that I’d be back on Azathioprine that night. The secretary called me back, she re-confirmed that my white blood cells are back to normal but my neutrophil level remains low. And, because of that, the consultant is continuing the Azathioprine ban. But, he would like me to go on steroids to control the worsening symptoms until the neutrophils are back to normal. I paused slightly and told her “I don’t want to take steroids”. I mean, bless this woman, I’m talking to her like she can change my consultants decision. She sounded quite sympathetic and told me “Doctor wouldn’t prescribe them if they weren’t necessary”. I eventually agreed to let her fax the care plan to my GP. She told me to call the surgery in 15 minutes to see what time they’ll be ready to pick up.

I started sorting the laundry out and before I knew it, I was crying because I REALLY don’t want to take steroids. I started to wonder, why everyone is suddenly making a song and dance about low neutrophils when they’ve been low in the past? I logged back into the patient access app, this time I looked at my white blood cell results past and present – they also fluctuate and in the past, both my white cell count and neutrophil levels have been low at the same time. But, I remained on Azathioprine.

An hour passes by the time I called the GP surgery, there’s no fax – they said to call again in an hour. I kill a further 2 hours and call again but there’s still no fax. By this point, after spending much of my day chasing people up and my patience hanging by a thread, I told them I would call back in the morning.

Thursday 3rd May: I called the GP surgery again and there was no fax. I would class myself as a chilled out person, I don’t get annoyed easily, but this situation was really pissing in my cornflakes. I called the secretary back, she was annoyed too. She sent the fax within minutes of getting off the phone to me and also sent a hard copy. She said she would call the surgery and re-fax the care plan and told me to call them again in 10 minutes. I left it an hour and when I called back, praise the Lord, they had the fax!

I’m not scared of the steroid itself, it’s the side affects: moon face and weight gain. I only have one logical explanation for this fear, the eating disorder I suffered as a teenager. I have been told I look tired and my under eyes are becoming dark, so the worsening fatigue and pain is starting to show – steroids are the only thing on the table for me at the moment so I have to (reluctantly) accept them. Mum and I researched what the best diet is whilst taking steroids: low carb and high protein. Although my dose is low, I’m not taking the risk and eating how I usually do. However, I have made it clear that if I don’t like them, I won’t keep myself on them.

I seriously didn’t think it would drag on for this long or that I’d end up on steroids. I’m at my wits end. I didn’t realise how much Azathioprine did for me until I was taken off it.

The dose: 15mg for 2 weeks, then reduce to 10mg for 2 weeks and finally to 5mg for 2 weeks.

A week without immune suppressants…

It’s been over a week since my last dose of Azathioprine and according to my research they were out of my system within 2 days. At the time of stopping Azathioprine, my white blood cells were reading at 3.3. However, I had the levels re-tested again on Friday (13-04-18) and they are now reading 2.8. My GP, on Monday, assured me that the levels would return to normal quickly. Instead they have fallen, which concerns me but, I seem to be the only one concerned about it.

I was fully aware that I would suffer due to being under medicated and I knew Lupus would drag me down quickly. Today has been my hardest day so far. My headaches, which were greatly reduced by the Apixaban have returned, it’s like a constantly thud in my head and there’s sharp pain behind my eyes. My joints, especially my knees and elbows have pain radiating through them, I can’t take my strong painkillers because they induce headaches – which would just turn my current headache into a migraine. My feet and fingers have lost feeling quite a few times which ended in pins and needles.

Around lunch time, I had severe pain on the left hand side of my back, just under the ribs. It was so severe that it reduced me to tears and made me nauseous, it seems to be coming in waves but so far, nothing as bad as earlier today. It was as if someone was stabbing me.

Fatigue has been mounting up, I have no desire or motivation to do anything but sit or lay. My eyes sting and burn and small tasks are beginning to feel like impossible tasks. I’m starting to feel like a zombie, I look awake and alert but I don’t feel it.

It scares me that I could and probably will get worse, I’m heading into my second week being under medicated. You can feel Lupus pull you in but you have no idea how far it’ll pull you, and that’s the scary part. But, this is what happens when you give Lupus free reign to be a dick.

I have blood tests this Friday to re-check my white blood cell levels. I’m hoping they will have risen but due to the drop, I’m dubious that it’ll be enough to re-start the lowered dose of Azathioprine.

Rheumatology appointment – 15/3/2018: a new medication.

I’m sure my appointments come around quicker each time. The time between my last appointment and this one was 4 months. This appointment was mostly centred around Antiphospholipid Syndrome.

As usual, the appointment started with the nurse for the usual checks. My weight and blood pressure were fine, but my urine is showing a possible infection. I’m unsure if I still have protein lurking in it, the nurse was concentrating on the possible infection.

As stated above, this appointment was mostly about Antiphospholipid Syndrome, I’ve never had an appointment that was nearly dedicated to this illness, people assume (and I did for a while) that all my symptoms are down to Lupus. In all honesty, this was an odd appointment to me, I was barley asked any questions. He asked how I felt since the upped dose of Azathioprine and when I replied “honestly…I feel no different”. And, that’s when the appointment changed direction to Antiphospholipid.

It isn’t new knowledge to me that my consultant wants me to take warfarin or something very similar to control my APS. For over a year, he’s believed my headaches are tiny blood clots on my brain that fizzle out on their own. For some reason, I have a great fear of Warfarin, the thought of taking it petrifies me. Which has resulted in a firm head shake at my consultant numerous times, essentially, I have denied treatment.

However, at this appointment, we found a middle ground. A medication called Apixaban, which has replaced my dose of Aspirin. Apixaban is an anticoagulant, which means it will greatly reduce my risk of DVTs and PEs. I take two 2.5mg tablets a day, one in the morning and one at night. My consultant believes the symptoms that aren’t being relieved by my Lupus meds, aren’t Lupus symptoms at all, but symptoms of APS. We’re hoping Apixaban will help relieve headaches and some degree of the fatigue. I have been given a months supply to see how I cope on it. The meds come with an alert card that needs to be kept on me at all times.

Another point of discussion was the back pain I’ve had for the last few months, it differs in severity. I also mentioned that I can do my first wee of the day at around 4pm. He said the urine sample I provided will be sent to the labs for further testing. He also wanted to check my full blood count, the last couple of times my blood count has been slightly low. If it continues declining, my dose of Azathioprine will be reduced back to 100mg. He will write to me with the results of both, but the nurse recommended I ring my GP to check if I need antibiotics, which she said I most likely will.

He scheduled us to meet again in 3 months time.

New Year, New Update.

I firstly would like to apologise for my lack of writing but Christmas, New Year and flares got in the way. And, if I’m honest I’ve suffered a bit of writing block, I have attempted at least 4 posts but failed to finish and post them. I would read them back and think “no, that’s too boring” or “that’s too long” and even “that’s just poorly written”, maybe I’m too self critical.

My last post was December, it covered my Rheumatology appointment and my dose of Azathioprine being increased from 100mg to 150mg. My blood tests had been moved from 3 monthly to 2 weekly. The results have all been fine and my body seems to be accepting the higher dose and as of the end of January, the blood tests have moved to once a month. I haven’t noticed a difference, I haven’t had any side affects but I also don’t feel better. However, and I have covered this before, Azathioprine can affect teeth and in January I had another wisdom tooth pulled out and 2 fillings…so I say I haven’t had any side affects but I can’t be too sure that the dental work needed was a result of the increased dose.

Although I say I don’t feel better, the dose was increased at a rather busy period of time…Christmas and New Year. I do like Christmas, I really do but the run up to it is quite literally exhausting and painful. There’s the shopping, which resulted in carrying multiple heavy bags that pulled on my joints – thinking back, I had to take naps after every shopping trip, they all floored me. Then there’s the wrapping, which seized my back and fingers up, just sitting at a table on a wooden chair caused mayhem to my body. And, finally getting out and visiting people with their gifts…an enjoyable time but exhausting. I spent New Year with my boyfriend and his family which was lovely but unfortunately by New Years day, the whole month had officially caught up with me and I was at the point of pain and exhaustion that I just wanted to curl up and cry. I had started flaring on Boxing Day, so to make it to New Years Day before feeling like that was quite the triumph. Despite the flaring, I had a lovely festive period with my nearest and dearest.

I haven’t got any expectations for 2018, I’m just taking it as it comes, which I’ve realised is the best thing to do when you have a chronic illness. I haven’t set any New Years resolutions, I never stick to them but I have made some slight changes. My first change is writing the symptoms I’ve had that day in a diary, I’m hoping it helps me to see a pattern in symptoms – which I can then tell my Rheumatologist, which in turn might help future treatment plans. Other recent changes include taking the supplement Evening Primrose and increasing my dose of Vitamin D. It was last year that my GP had told me to take it, but whilst in Boots, I found a higher strength of it and to my research, during winter you need a higher dose. Although, I will more than likely keep myself on this higher dose all year round.

I have recently had some new symptoms. In recent months I have a dull pain almost daily in my shoulder, usually my right but it often spreads to the left. I recently had a bout of what I presume was vertigo, I was sat eating and all of a sudden my hearing went, the room was spinning and I felt so hot…it honestly ruined my meal and I bloody love chilli. I had to go and lay down and that’s when I noticed my hands were trembling and I started to feel nauseous. The next new symptom prompted some worry (95% of the worry stemmed from my mother) but it’s pain in my back that can sometimes spread to my abdomen. When I pointed the location of the pain my mum said “that’s the kidney area, that’s concerning me!” and she even mentioned going to A&E when it was making me walk hunched over…but I refused due to my blood tests for kidney function being fine, I also tested my urine and it came back fine. I still get the pain daily, and since nothing is flagging up in tests, I think it’s just another Lupus thing that I’m just getting accustomed to. I can see why she worried though, kidney complications are rife with Lupus patients.

This past Sunday was hard for me, I found a new dog walk for my boyfriend and I, it was a woodland walk but I didn’t research it enough and it turned out to be rather long and quite hilly in places. We turned back when my left hip started to hurt and on the way back my knees and elbows started to hurt. I began to feel as if I was going to faint, a sensation that frightened me, it felt like my legs wouldn’t carry me further and that I would just keel over at any given point…away from home. That night I sat and held back tears because I took my mind back to when I was healthy and thought “Once upon a time, I would have finished that walk, we didn’t even make it to the half way point. I’m still paying for it now, my joints have sharp pain radiating through them, I ache all over and my head is pounding…not to mention the fatigue.

I shall leave this update here before it gets far too long and you lose interest. I will be putting my brain to use and thinking of new posts in the mean time.

 

Hidden Illness, Hidden Judgement.

I’ve been told “everyone is judged” multiple times since being diagnosed with Lupus and it’s a statement that will always get on my last nerve. I agree, everyone is judged at some point in their lives, but it’s usually over things they can control and have the power to change. We are judged for every little thing we do or do not do, unless you have been judged for something beyond your control, left to feel like you are worthless, useless and at the bottom on society, do not tell me “everyone is judged”. I will not accept it and I will not accept it from a person who has never experienced life with a debilitating illness or disability.

In a bittersweet way, I have experienced life being both healthy and sick. I say bittersweet because I can take my mind back to how easy life was and how I used to be able to work long hours and do task after task. It wasn’t until I became sick that I realised that the world is catered for able bodied people and that society is judgemental. Earlier this year, I went to pick my prescription up, an abnormally large bag of pills for a 22 year old. I got on the empty bus with 3 other people, with my prescriptions in hand and sat on the seats that are dedicated to the elderly and disabled, to which a woman loudly said “I always save those seats for those who need them” to another passenger. That was my first experience of being judged by a stranger in public, the only reason I used those seats on that day was because I was in sheer agony, agony that cannot be seen. If I was in a wheelchair, would she have said the same thing? If I had crutches, would she have said it? I have heard many stories from others who suffer invisible illnesses, stories about how they are harassed and embarrassed by strangers when they use a disabled parking space despite being a blue badge holder, because the stranger can’t see anything wrong.

Judgement sticks with us, like it has for me with the woman on the bus, it doesn’t matter how much pain I’m in, I will now no longer use the seats for disabled people even though my illness is covered by the Disability Act and I have a right to use them. It imprints fear into us, there’s thousands, probably millions of invisible illnesses sufferers that choose not to leave their house for the fear of being judged, harassed and embarrassed by people who they’ve never met, by people that could never fathom the enormity of their health issues. The woman on the bus looked at me as a healthy but lazy 22 year old woman who couldn’t be bothered to walk to the seats for able-bodied people.

I’m tired of it, sick and tired of people being judged because they are different. People have lost the ability to have compassion, we are a self-centred, unsympathetic and judgemental society. I was watching a day-time programme and they had a woman on with one arm, she stated parents shy their children away from her in case they find it scary. Why aren’t parents teaching their children that no two people are the same? Why are they not teaching their children about disabilities? Why as a society are we tolerating this behaviour to the sick and disabled?

The title of this post says ‘hidden judgement’ because, unless you’ve been through it or have a close friend or family go through it, it is hidden. Able-bodied people are oblivious to it, why wouldn’t they be? They aren’t sick or disabled, the world is an easy place for them. They don’t have to strategically plan days out or holidays, making sure the establishment has disabled access and if the transport is sufficient for their needs. Their lives don’t revolve around countless hospital appointments, medication and never ending pain. They can leave the house without fear of being embarrassed by strangers. But, it is an issue to them and an issue that can be helped if they just opened their narrow minds. It isn’t the able-bodied people, the wealthy or those who claim to be understanding that I see offering a helping hand to those in need, it’s the people with nothing but the clothes on their backs or the people who are at breaking point with their own issues that offer that helping hand or shoulder to cry on.

I don’t understand how people shy away from disabilities or illness, is it because their scared and don’t know how to confront it? There’s nothing to confront, you treat the disabled or sick person how you would anyone else. How difficult is it to not judge a person? What happened to equality? All they want is to be treated the same, to not feel like their at the bottom in society and to not live in fear.

I now understand that it’s not healthy, able-bodied people that make sacrifices but those who suffer illness or disability. Frightened to cancel plans with their own family or friends for the fear of upsetting them, forcing themselves through social events or activities when all they want to do is be within their home comforts with painkillers. I have seen people get frustrated and angry with me for cancelling plans, because they cannot see the reason I have given for cancelling.

Living with illness or disability is isolating and often dark enough without the added judgement from strangers or even people close to us. As a society we need to embrace and celebrate what makes each individual different, to not judge people for their differences and to treat the ill and disabled how you would treat anyone else.