Walk a mile in my shoes: Interviews with invisible survivors.



Take a moment and look at the person next to you, every human being is a mould of possibilities just waiting to happen, what you don’t see is the strength of the person inside each individual and how hard they have to fight to achieve their personal goals. Just as John C. Riley sings cellophane in Chicago, when you have an invisible illness people choose when they want to acknowledge it or even care about it. From personal experience I can tell you that this leads to nothing but guilt and self loathing – when others choose to ignore our illness they’re choosing to ignore our feelings, society becomes a mirror that you look into and only see disgust. And just like when we look at our reflection, we mirror these actions, this needs to stop. Those of us with an invisible illness already suffer from depression and anxiety through having to cope with this life change, so we don’t also need questions and statements like:-

You were fine yesterday...you’re sick again...maybe if you try this....maybe if you lost some weight....you always make it about you....you’re cancelling again....you need to take better care of yourself....If I can do it, you can do it....stop complaining....you’re just being dramatic....if it were that serious you would look sick...

All of these statements are extremely harmful to someone with an invisible illness, because guess what – we are already doing our best! Our bodies are very different to others and sometimes we need more rest, our illness significantly impairs ‘normal activities’ and our day to day lives. Very often once you have been diagnosed with an illness those on the outside of it tend to see this as a fix or cure because you are receiving treatment - but you need to remember that the person who has just been diagnosed now has to learn how to live with this, their lives will never be the same again. Instead of flooding them with invasive questions and problem solving statements just be there, let them know your shoulder is free for them to cry on, because if they are anything like me then they cry a lot! Listed below are some of the invisible illnesses around today – I apologise if any are missing.

ADHD Food Allergies

Adrenal Insufficiency Fructose malabsorption

Anxiety disorders Hereditary fructose intolerance

Allergies/Toxic intolerance Hyperhidrosis

Arachnoiditis Hypoglycaemia

Asperger Syndrome Hypothyroidism

Asthma Hyperthyroidism

Autism

B12 Deficiency IBS

BPD Interstitial cystitis

Brain Injuries Lactose intolerance

Cancer Lupus

Charcot-Marie-Tooth disease Lyme disease

Chronic Fatigue Syndrome Major Depression

Chronic Pain Metabolic Syndrome

Sleep disorders Multiple Sclerosis

Coeliac Disease Multiple chemical sensitivity

Crohn’s Disease Myasthenia Gravis

COPD Narcolepsy

Depression Personality Disorders

Diabetes Primary immune deficiency

Ehlers Danlos Syndrome Psychiatric disabilities

Endometriosis Renal failure

Epilepsy Rheumatoid Arthritis

FASD Schizophrenia

Fibromyalgia Transplants (Organ)

Over the last few weeks I have spoken to some incredibly brave people who show enormous strength with what they have to go through every day, they answered some questions for me and have courageously allowed me to share their responses with you, this is all written in their own words, so you can see what a mile in their shoes is like.

Kate Crisp

Hello, my name’s Kate, I’m 28, married to my wonderful husband and have 2 babies.

I have a few chronic illnesses that make my life a persistent struggle; they are Hypothyroidism, Fibromyalgia and Myalgic Encephalomyelitis (also known as ME or Chronic Fatigue Syndrome).

All of these illnesses basically cause me to be constantly tired, drained and in pain 24/7. But for me, the worst part about it all is that they’re invisible! It took me 3 years and 4 different doctors to finally be tested and believed...

Coping with my illnesses can be extremely difficult, there’s no “cure” so when you’re diagnosed, straight away you’re told that “unfortunately you just need to put up with it”. Every day is different, and that’s what’s so frustrating! I’m able to walk two miles one day and then the next I can’t even walk to the toilet without my husband helping me.

I’ve tried all the treatments that are recommended. Lots of medication, cognitive behavioural therapy, physiotherapy, gentle exercise and nothing worked or took the pain away.

It’s now come to the point where I have to take each day as it comes and manage everything the best I can. I have really strong pain medication when it’s needed but I’m first and foremost a Mum and I can’t look after my children when my mind and body aren’t connected. I couldn’t cope without the support from my husband; he’ll drop everything when I need him. He’s just incredible.

Since the age of 5 I knew I wanted to be a hairdresser. By the time I was 18 I passed my hairdressing course with distinctions and got a job in a lovely little salon. I was so happy! But I was in so much pain. I’d work 10 hour days continuously on my feet and by the time I got home I’d spend the night crying in pain just wanting it to stop. It got to the point where I would resent my job, my dream. I couldn’t cope with it anymore and I had to face to fact that I wouldn’t be able to do what I’d worked so hard for. My heart literally broke and I spiralled in to a bit of depression, when it really hit me that my life wouldn’t be the way I planned it.

My job right now is a mother and trying to take care of myself. Doing both at the same time is the most difficult thing I’ve ever had to do, but I will not let my illnesses define who I am.

I’ve been so lucky that the majority of my family and friends understand the best they can when I can’t make it to certain occasions. Obviously I won’t let people down unless I absolutely have to, but there’s always that worry that you will lose them if you keep cancelling on them.

My husband is the best. He loves me no matter what. If I can’t get out of bed one day he still makes me feel like the most beautiful girl in the world. He helps me, supports me with no questions asked, I honestly couldn’t wish for a better person to face this crap with every day. I maybe unfortunate in a lot of ways, but I know I have so many wonderful reasons to get up and fight this with everything I have.

I’m fairly certain that the majority of the outside world hasn’t heard of my illnesses or just think they’re made up. And that’s fine, I don’t have to justify how I feel to anyone.

I know some of the closest people to me forget that I have to deal with constant pain, tiredness and fatigue. No one really asks me how I am and even if they do I think it’s out of courtesy, no one really listens or actually wants to know. But to be honest how can someone who isn’t going through what I am completely understand?

There’s hardly any medical research for fibromyalgia and chronic fatigue syndrome. A lot of doctors don’t even believe it exists so why should anyone else?

All people seem to care about is if you have a job, regardless of the reasons or situations. I sit there and listen to people complain about their jobs and co-workers, but they have no idea what I’d give to be able to have that problem. To have a purpose that’s just for me. If you don’t make your own money you’re instantly belittled and no one gives a shit about your day (especially the older generation!).

The one thing I’d love for my family and friends to understand is, I’m still me.

I still want to be invited to things; I still want to be acknowledged. Yes I’ve changed in so many ways but that shouldn’t affect how they see me.

What would also be incredible is if they could just Google my illnesses to learn a little bit more about them. Awareness is crucial, I know that thousands of people are in the same situation I’m in, fighting battles with their minds and bodies yet they still manage to get out of bed in the mornings and face their demons.

They don’t call us warriors for nothing.

Primrose Flower

My name is Primrose, I’m twenty four years old and I've been suffering from Major depressive disorder/depression for ten years. Depression has a way of replacing your confidence with pure anxiety and self-hatred. The scariest thing I found about suffering from a mental illness is the effect it has on every aspect of your life; it’s not just what’s inside your head. For me, suffering from depression became debilitating as I couldn't find happiness in the little things I used to enjoy doing. More often than not, depression would cause me to sit in my room and cry for hours on end and usually for no reason at all.

Depression is something that cannot be healed simply, and I wish I had been told just how easy it can be to fall back into a spiral of severe isolation, self hatred, anxiety, self harm and sometimes suicidal thoughts.

It's so typical to believe that depression is nothing more than being sad. Depression isn’t feeling sad; if it were, it would be so much easier to deal with for all these years. Every time I'd let depression affect me, my body would go into a massive shut down mood as I'd hardly sleep, I'd be sick: I had no energy to fight how I felt days on end.

I’d be asked what triggered me to feel ‘sad’, and I felt so humiliated that I didn’t have a ‘trigger’; depression hits you when you least expect it, and it comes in frequent waves. As well as being physically fatigued, my depression led to paranoia, which had a huge impact on my life, causing me to fret and become severely overwhelmed all the time this was an endless cycle that continued between being paranoid, which made me panic, which made me depressed. I distracted myself by consistently working till I burnt myself out, distractions are a massive help for me to not deal with the real Issues at hand. I wish I had been told that depression isn't something to be ashamed of, as telling people I had depression was a task I still struggle to achieve but I have and will continue to achieve that goal over the years to come.

It’s so true when you hear that support is always available, whether it is from friends, families or organisations, but seeking this kind of support made me feel very uncomfortable and very vulnerable at first. Depression isolates you, making you believe your importance matters less than those around you. Depression pushed so many people out of my life to the point where I feared forming friendships, because the pain of losing the people I loved was too much to bear.

It was important that my friends would embrace my depression rather than see it as a flaw of mine, so I began openly talking about it to those around me, and by raising awareness, quite a few of my friends stepped forward to say they had been through the same experiences, or at least knew somebody who did. Gaining the strength and encouragement by friends I went to my doctor’s and got the help I needed, I didn’t realize it at the time but talking about my disease was like therapy.

I realised for the first time in my life that I wasn’t alone, and mental illness is actually far more common than we’re led to believe. Just because my illness is invisible, does not make it any less important than a physically disability. Mental illness isn’t a trend, but it shouldn’t be a taboo either. One day, we’ll find the middle ground. If I could tell my younger self anything I would tell her you are beautiful and you are truly loved, you will go through many struggles in the years to come but you will get to that higher better place you deserve to be. You will have the happiness and form true friendships. We all need to be kinder to ourselves and the people around us. It’s so important to check in with loved ones, work collages and anyone around you. Just because someone appears to be fine on outside does not always mean they are truly fine on the inside. Too often we hide our true emotions as we feel someone else has it worse than us or we are not important enough. Sometimes it only takes one message to bring someone out of their dark place and into the light.

Ever since secondary school I have suffered with extreme depression. I can defend the issue for hours and hours; however I get embarrassed when I feel sad. I get so embarrassed when I am in a cycle of sadness and those around me do not understand and treat me differently. I have had moments in my life where I never got the support I needed and was told time and time again it was a phase and I will get over it. Typically most of my life I’ve always just been called dramatic when I’m upset. Depression can be the hardest when others just don’t understand you.

Please, stop.

This is not me being lazy, ungrateful or selfish. This is me dealing, sometimes suffering, with depression. This is my demon running its black toxins through my head, poisoning my thoughts and feelings. It’s ruined many friendships and romantic relationships over the years as people don’t want the added baggage or stress of someone being so negative and low entering their lives. This isn’t a choice it’s my life... it’s going to stay with me for the rest of my life. Forming any new relationships moving forward won’t ever be easy but the right people will love you for you and depression included. Because we didn’t choose depression, it is a scientific fact that has been proven recently that depression is caused by an imbalance of hormones in the brain, people always assume we are making up stories because we want to skive or attention seek but we don’t have a choice in the matter, we were born this way.

For me, depression is like that pile of laundry that you don’t want to show in your Instagram pictures. I never want to show my pile of laundry to the world, I want my life to seem happy and put together, as if I folded and put away all my laundry right out of the dryer. I have an amazing support group of friends and family around me so people question my motives for feeling down – the problem with depression is I don’t need a reason; it is a very isolating disease so I can be in a room full of loved ones but feel completely alone. Most of the time I find that my worst enemy is myself; I am constantly hating myself every second of every day. And by hating myself I don’t always mean my physical appearance or how I’m dressed, but out of nowhere I will make myself relive a situation that was traumatic or upsetting – I have no idea why this happens but it is like a personal hell.

Colin Bartlett

Hi my name is Colin I’m 41 and have been a renal patient (Kidney disease) for the last four years. In 2016 I was diagnosed with stage 5 renal failure after being admitted to hospital for throwing up blood. Renal failure is an invisible illness, so invisible that I myself did not realise my body was failing till I almost died, the stress from my kidneys had caused an ulcer to grow in my stomach lining and this had been bleeding for a long time – I am thankful for the ulcer though because without it I wouldn’t be here. When I was admitted into Basingstoke hospital and told I had an ulcer that was very treatable I felt relived, that was till my doctors seemed to double in numbers and then told me that my Kidney function was at 5% when they should have been working at 80%+. Immediately I was transferred to Portsmouth renal unit for dialysis and to speak to their renal specialists. I can’t thank the Dr’s and especially the nurses enough for all that they do, I spent three weeks in hospital with my beautiful wife by my side, we had been married for 8 months, and now knew what ‘the first year of marriage is the hardest’ meant. The hardest part about my stay was the day I had my kidney biopsy. For a biopsy they have to place instruments which look like giant candy grabbers into your back and take a chunk of kidney to biopsy – sounds easy enough right. Well with this procedure there is a risk of internal bleeding, the risk is very low but you know me – I love a challenge. After the procedure I had to spend 6 hours on my back in a room with no television and no other patients, I had Georgie with me but in the half an hour she disappeared to grab a coffee I had a panic attack and almost sat up, but the nurses as I said were brilliant and kept me calm till she came back. That night I was in the worst pain of my life, I could feel my body fighting to tell me something was wrong, we called the nurses and they consulted the on-call GP, he came in and prescribed me some paracetamol and told me to sleep it off. A few hours later I was screaming in pain, Georgie called the nurses back in and they finally flipped me over and looked at my back, I had a purple bruise leading from my kidney that had spread across my whole back – I was bleeding internally. There were no surgeons on call in Portsmouth so I was shipped off to Southampton for emergency surgery. This all happened in the first week, after that I had a line placed in my neck to start dialysis, I understood that I needed the dialysis to help me get better but it wasn’t till later that day when a Dr came into my room and told me that there was no hope for my kidneys, they were lumps of coal in my side and had almost cost me my life, I was alone and cried for the life I wasn't ever getting back, nothing would ever be the same. If it weren’t for my ulcer, my Dr told me, in the next few days I would have fallen asleep next to my wife and never woken up – I honestly believe my parents were looking out for me in heaven and that saved my life – cheesy yes but I believe someone was looking out for me. A little shy of a year of dialysis and the worst fatigue, I was called early in the morning on May9th 2017 – I had matched with a kidney, I had dialysis with some incredibly brilliant characters who had been on the list for years if not decades but I was on the list for less than a year – another miracle. To the woman who signed up to be an organ donor and saved my life – thank you.

Dealing with this disease feels never ending, my first challenge as I stated before was dialysis which I had to try and fit in three times a week a long with four days of work – I had no idea how hard this would be. My dialysis would take around four to five hours every Monday, Wednesday and Friday, I would travel up by bus even though I could drive because it pulls every ounce of energy from you, the process was not painful but I would get terrible cramp in my legs, to the point where I could end up screaming – but this was normal on the ward. I would go from home to dialysis to sleep three times a week; it didn’t really feel like living. That being said – I am very thankful for dialysis. My transplant saved my life in more ways than one, the surgery that took a little over 7 hours left me waking up with pink skin instead of grey and feeling powerful instead of trapped inside my body. My sisters and I came up with the name Kenneth for my Kidney but then changed it to Kim when we found out my donor was female- and like they say Women work hard! In just a few hours of having my transplant my numbers were through the roof, normal numbers for a transplanted kidney is around 60%, Kim was running at 90%, she’d got to work straight away and whipped my body back into action, it’s not always simple being a transplant patient but since Kim I have never looked back.

Now every morning when my alarm goes off it is not only telling me to wake up but also reminding me to take the 9 tablets that keep me and Kim healthy every day, without them I would not be here. I have several food restrictions which have changed my life a lot – I really miss a bloody steak and raw sushi! One of the side effects of having transplant surgery is the chance of getting a hernia due to the weekend stomach muscles, this unfortunately happened to me so now I have to be careful when lifting anything and cannot lift or carry anything over 5kg. But Kim is still going strong and I’m proud of her every day.

You always worry when something life threatening happens to you, that it will damage your relationships but for me I found it went the other way. My family and friends went above and beyond for me; I couldn’t have a better support group. They could never understand what this was like, never truly know what I was going through but they tried, they asked questions and did research on my disease and what they could do to help me. When I was on dialysis I had to switch to Peritoneal dialysis so I could work more, we couldn’t survive with me only working four days a week on lower hours, for this I had to have a tube fitted into my stomach that would do the work of a dialysis machine but I could do it while at work. The company I work for couldn’t have been more amazing with this, they asked me if there was anything they could do to make it easier for me and if there was anything I needed to feel safer as my risk of infection was higher due to a continuous open wound in my stomach. – My relationships have remained strong and solid throughout all of this, so thank you all.

To the outside world people just assume that once you have a transplant you are cured – and when I say everyone I mean everyone, I no longer get free prescriptions because I am seen as ‘cured’. But people forget that for me I will never be cured of this, this amazing gift I was given will last me from 15-25 years and then I will have to go back on the transplant list, everyday is a struggle at some point as I am always very tired and my legs get painfully swollen from the tablets that I take to keep me alive. I have blood tests every 3 months to see how my kidney is doing and even though I feel great I still get that terror that something is going to go wrong. When I have days where I am not feeling great or can’t perform a task I managed the day before I get questioned why I am this way when I have my kidney – please remember that this is all a continuous process for me that I will have for the rest of my life. I have a foreign object inside of me that my immune system is constantly trying to fight off – to stop my body from doing this I take immune-suppressant drugs which deplete my immune system and leave me open to illness. This year has been extremely hard with Covid, Georgie and I were stuck inside for over 5 months and terrified, friends and family again were a godsend, we are very lucky.

Give me time to explain what is going on – right now people wonder why I pause in front of buildings before I enter them or sit in my car holding the steering wheel till my knuckles go white – its fear. I am so terrified that I will catch Covid and loose Kim that I have panic attacks while I am out, Georgie is so understands and the other day led me out of the supermarket and went back in the shop when I froze by the bread section and couldn’t move. My eyes were wide and asked for help but everything else had shut down, I have found that anxiety has been a big issue for me ever since my transplant surgery, I have never really suffered from anxiety before but now even loud noises cause me to panic. I guess if I could say or ask anything to make people understand what I go through it would be this, just give me time.


Sophie-Louise White


Hello! My name is Sophie-Louise, I’m 26, and I have Secondary Adrenal Insufficiency, after a removal of a craniopharyngioma. Secondary Adrenal Insufficiency is often mistaken for Addison’s (by my doctors too believe it or not), it is similar to it, but not the same, and people get this rare condition in different ways. For me it’s where pressure had been on my pituitary gland for so long that it forced a hormone to stop working – cortisol. Normally patients lose ACTH first then cortisol, but it is my belief in the explanation that was given to me on diagnosis that I lost just my cortisol (or ACTH who knows at this point). These hormones give you adrenaline, but what most people don’t know is these hormones are what make you function every day, they wake you up, and they give you your energy for the day. It’s most common in children and older adults. I was diagnosed at 21.


Every day I wake up I feel sick. I know I’m not going to be physically sick, but it’s the taste that comes with it. The type that makes your lip curl, and your stomach refuse the idea of food, then question if actually food is exactly what you need. I’ll take a tablet, upon waking, after working out that taking it straight away actually helps more than someone would think. I get ready, I go to work, three quarters into my shift I’ll have to excuse myself to take more medication. Depending on the day depends on the symptoms. Sometimes it’s headaches, or lower back aches, fatigue, sometimes it’s too many trips to the loo, sometimes it’s that same feeling of sickness. Either way, you have to push through, focus on something else to keep you going, and there’s still that ‘knowing’ in your body when you’re due a tablet. If I accidentally miss my usual time, my words start to get foggy, they blend in my mouth and slip out like a shredded mess. After the middle tablet, things are good, but there’s still a period of time for me where I feel tired, and sometimes I’ll have to give in, I’ll have to nap because it feels like my head is a brick and my body is wading through mud. Sometimes I don’t have that option, I’ll have uni lectures after work, and I’ll listen and write notes, which so far isn’t a big struggle but there has been the odd one or two times where I’ve been so tired I can’t think.

Then I’ll take my last tablet of the day at around 5pm, have dinner, and carry on with uni work, or writing, or calling and speaking to friends. I go to bed earlier than I used to as I start work so early. But each day brings a new risk assessment. If someone makes me jump and I feel sick after? Is that because I didn’t produce enough cortisol? Is that because my body is shutting down? If I feel sick before I fall asleep, will I wake up? With no way to measure my cortisol, the answer is never a definite one. So, I take an extra tablet – just in case. If I’m really sick, or dealing with other symptoms, I have to ‘double dose’ on my meds. But again – what if that’s not enough?

I remember a story about a girl with my condition who went to the dentist for a cleaning, she came back home, and fell asleep on the sofa. Her boyfriend went to work, and came home, and she was still sleeping. Unmoved. But she wouldn’t wake up, and never did. It’s the scariest story I’ve heard, and one not widely told. There was no shock from the media, there was no national public outcry about how this girl had suffered. She just slipped away in her sleep and that’s the scariest thing for someone like me with this condition. No checker, no way of knowing if you’re judging the right amount of medication you’re giving yourself.

Everyday people like me live with that knowledge, with multiple stories like that, and every day they have to just keep carrying on and hope for the best.

I’ve made it sound quite morbid I realise. And truth be told I try my best every day to look at the positives, to look at my accomplishments, and to keep those that make me happy beside me.

When it comes to relationships, would you believe me if I was one hundred percent honest? No-one in my life back when I was 21 understood (apart from my parents who tried their best). But I was in a weird state in my life back then. It’s like waking from a dream and realising that actually it was a brewing nightmare. My friends didn’t understand. Family didn’t visit (parents did of course, they were the real gems). So I politely said goodbye to those people, and made new relationships, and the people I have around me now are educated in my condition, are understanding and I’m super grateful that I have them in my life.

How do outside people see my illness? They don’t. I’m a perfectly healthy girl in their minds. Nurses think you’re drunk when you’re in a crisis (adrenal crisis is what happens when your body doesn’t produce enough cortisol and starts shutting down, goes into a coma, and then if untreated you die – this happened with the girl who died. It is believed she didn’t stress dose for her cleaning.), strangers just treat you like any other person (which really, why would you want them to treat you differently?), and once you tell people about it, they ask questions which can be insensitive or just shows they are uneducated in the subject. I try my best to educate as many people as I can. That’s the aim really. You don’t want people to look at you differently, you just want them to understand that when you say you’re tired, you mean it. When you cancel, it’s not personal. When you feel sick, it’s a problem.

If I could say one thing to my friends, family and future relationships to help them understand the everyday struggle and worries I go through, I would say that it’s a constant thought in the back of my mind, and some days the thoughts are shouting, and sometimes they sleep, but they’re always there. A simple solution is sometimes just a hug.

This is just a small glimpse into the world of people with invisible illnesses, please know that you are never alone and we are all fighting to be heard and understood and we will never stop.

FMAUK.org

Mentalhealth.org.uk

Samararitans.org.uk

Kidneyresearchuk.org