Life with chronic illness – what it’s really like

“Get well soon!” That’s just one of those every day sayings right? But what if you have an illness that you will never get better from? The worst part about having a chronic illness is that it is a life sentence, unless there is some miracle cure, if you have a chronic illness, it will be with you for forever, there is no getting better soon, no happy ending,  there is no end in sight, there is no cure or end game.

And that is why, often it isn’t the physical pain that is the hardest thing to deal with, it’s the emotional pain that goes along with it.  The guilt, the idea that you are a burden to those around you.  It can feel like you are being crushed, that the illness is drowning you and swallowing up the person you are, leaving only this shadow of a person, a patient, weak, ill. It is so hard to deal with this.

How on earth can you fight this emotional suffocation when the root of it is never going to leave you?  If you have a ‘normal’ illness, you see the doctor, get a diagnosis, receive treatment and get better.  Chronic Illness just doesn’t follow that path.  Often diagnosis is difficult as the symptoms can be confusing and varied, it is so hard to quantify a tiredness that never goes away, or a feeling that your limbs are lined with lead.  How do you explain that your mind whirs constantly whilst simultaneously feeling like it is filled with porridge?

sam cleasby ibd blogger sheffield chronic illness

Being ill in this way is living with the unknown.  Every day is different, it’s hard to plan when you have no idea how you will feel when you wake up, not knowing whether you will feel ok or like you are 100 years old.  And so it is hard not to feel anxious, depressed or completely lost when you are in living one huge question mark.  There are constant questions and often no answers.

When people say “Get Well Soon” or ask how you are feeling, it is an uncomfortable exchange, you can either lie and say ‘fine thanks’, or horrify them with honesty ‘Well I have a slight blockage, a hernia, I have been to the loo 16 times today, the acid in my poo has burnt the skin on my bum and I am so tired I feel like I am dying’ or the one I usually go for is ‘getting there!’ with a cheery thumbs up…

People don’t know how to deal with chronic illness, both the person who has it and the people around them.  There is no guidebook for lifelong illness, no way to answer all the questions because it is so personal and there are so many illnesses that are a lifelong battle.

When you have an autoimmune disease, your body is literally fighting against itself.  The physical side of it is all through the body, living with daily pain, fatigue, aches, toilet trips, medication, food intolerances along with hospital trips, surgeries, treatment.  It is, at times, too much to bear.

But mentally and emotionally it is devastating.

The title of this post is ‘what it’s really like’ and I want to try and explain how I feel mentally…

I feel like my body is a failure, that it lets me down constantly.  I feel guilty.  I feel like a burden to others.  I feel like I let down people around me.  I feel like someone has a grip on me, a crushing hold on my chest that is squeezing the life out of me, holding a pillow over my face.  I am exhausted from trying to be stronger than I feel.  I feel a sickly jealousy when I see healthy people.  A heavy hearted knowledge that my illness affects my husband and children, that I am not the wife he deserves or the mum they need.

I feel a sadness that sits deep in my bones, a guilt that is a lump in my throat stopping me from speaking and an embarrassment that my body is so broken.

exhausted quotes chronic illness

That is a bad day.  On a good day where I have little pain, few toilet trips and energy in myself, I feel upbeat, I feel proud of myself, I enjoy life because I know this healthy feeling may only be brief, I love harder, I am more open, I laugh longer, I am silly, I am fun. I have hope.

And hope is key.  Without hope, we have nothing.

This is life and so you have to learn to live it.  And LIVE well.  Your life may not be the one you have hoped for, the life you ever imagined.  But is the one you have and there is nothing you can do to change that.

You can’t take anything for granted, and sit on your laurels, you are ill but at least you have a life, there are many facing cancer and other illnesses that are terminal and so you can’t feel sorry for yourself.  (Not all the time, but sometimes everyone needs a full on mope!)

You learn to embrace and enjoy every good day you have, as you don’t know when the next one will be.  You learn to appreciate the small things, the good things in your life.  You take control of your own destiny and try everything you can to make your health better, through diet, medication, alternative therapies, talking, sharing, living…

Being sick makes you a lot of things, many negative, but some can be positive. Strength. Weakness.  Empathy.  Guilt.  Wisdom.  Fear. You have to take the lows, but learn to see, embrace and appreciate the highs too.

What is living with a chronic illness like? This is my story, but ask others.  You have a friend with ME/CFS? Lupus? Rheumatoid Arthritis? IBD? Don’t be afraid to ask questions, talk about it, tell them you want to hear how they actually are, not just ‘fine’.

The isolation attached to Auto Immune and Chronic Illnesses is immense and I feel that if we could all talk a little more about our lives, that we can help each other to bring discussions about illness into everyday life and make a difference to so many people.

This is my life with chronic illness.

Tell me about yours…

Sam xx

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18 thoughts on “Life with chronic illness – what it’s really like

  1. Tell you about about mine? You have said it so well I’d like to print it off and show it to friends and work colleagues. I am hanging on to my job by a thread right now. “Getting there” is exactly what I say. Meanwhile – I do indeed have a hernia which is painful every day, am eating a little of a VERY restricted diet and only once a day so as to minimise IBD pain too. My morale is OK bizarrely, but I do hate those questions! “Getting there” – I spend every other day in bed.
    Thank you for your blog.

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  2. PS I say I hate those comments – I am obviously happy to have people who care about me in my life but I’d love them to understand more. Yes, let’s talk about it.

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  3. This is so spot on! For me, it’s bipolar, chronic migraines and depression. I get frustrated when others do not understand that this is not the life I chose, but I choose to live it as positively as possible.

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  4. Sam. Who knows what is the right thing to say but you are inspirational and so glad you are back in my life. Hubby and kids are so lucky to have you but they clearly know it to xxx

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  5. Sam, you never fail to amaze me with your spot on observations and experiences. This sums my life up so well, I’m going to share it on my wall so others can see and maybe start to understand life with chronic illness really is ‘life’. You can feel better, healthy even, some of the time and put on a good front, but who really see’s what happens when you get home after a long day and curl up in a ball and wish desperately to do something, anything! But your body won’t join in with the enthusiasm of your mind. When you look at those you love and think they deserve so much better than this. When you already feel guilty about time away from work or not contributing as fully as you expect yourself to when there, but know, deep down, that despite other peoples interpretation of you, you are trying your best.

    I’ve just lost my job – capability on the grounds of ill health! I was expecting it but it still bloody hurts. I tried to be efficient and helpful, professional and flexible to my team and enjoyed what I did. I just took too much time off due to legitimate, recognised chronic illness :(. It hurts to know someone else will be sitting at my desk. It hurts to know that I’ll be remembered as the ‘one who got dismissed for being off sick’, despite the good work I actually did when there. It hurts to know I’ve let family, friends (and myself!) down. It Hurts! Period!

    Yesterday was a ‘good’ bad day; i went out on my bike with my partner, who thinks nothing of cross country or downhill riding for miles. I want to get fitter ( to help manage my illness and moods! Always that ulterior motive!) , he’s bought me all the ‘rad’ gear so despite being a marrdy bum, off we set. Not only do I look ridiculous in a helmet and shorts, but I’m obviously a beginner at this mountain bike lark ( I just wanted a normal bike with a basket on the front for my little dog, so I could charmingly cycle for croissants and freshly squeezed orange juice each day. Fat chance of that!). But there I was, whining I couldn’t go any further, I was sooo tired etc etc. At the very end of the ride, after a HUGE hill I had to push the bike up (t’other half merrily pedals up it with ease, dogs bounding effortlessly along in his wake) I re-mount the evil contraption and pedal about ten yards before falling off and landing in the mud! Dogs think this is a new game! Legs refuse to stand up! Have to be helped up like a child with scabby knees, by an old school friend and (cringe!) my ex-boyfriend. When gentle help didn’t get the legs to work I had the joy of being publicly hauled up by t’other half, hands under the armpits stylee. I didn’t know whether to die on the spot (so I didn’t have to ride anymore. Bugger the shame right!) or bravely (????) ride on out of view before pushing the bike the rest of the way home.

    I chose the latter, even managing to cycle up a very small hill through sheer bloody stubbornness. I got in, had a bath and the world seemed better for having given it a shot (albeit an effort a child would laugh at) and for managing something physical. I even started planning a ride today, until my butt cheeks woke up aching!!!. But all in all, it was a good day. I can laugh about it now, but the little buried voice still creeps in (just imagine how smokin’ you’re be if ‘normal’!).

    But I’ll keep trying; keep pedalling; get another job; (insert three million other goals here); cos that’s simply who we are. Health warriors, battling daily for that which ‘normals’ take for granted. Cos we’re tough, cos we’re stubborn, cos we still can, just about, right now!!!

    And now it’s time to shut up, lol xxx. Keep blogging Sam, I love reading it. Xx

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  6. My mum always went for the graphic details when people asked her how she was feeling. It made a few people feel awkward (teenage me especially), but she often found allies in the land of hidden illness through it too.

    It still makes me feel awkward at 33, but I have learnt to understand that TMI is one of her coping mechanisms.

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  7. One of my favorite responses to ‘how are you’ is a manic grin and ‘full of codeine!’

    I’m a social work student on my final placement and this week I was diagnosed with peroneal neuroprathy and muscle atrophy and currently have what feels like one leg made of lead, or not there at all. This is in addition to Fibromyalgia, which leaves me in constant pain, Inflammatory Arthritis, which means I take tablets that lower my immune system and often make me quite dopey, and Idiopathic Hypersomnia, which means I struggle to function on less than ten hours sleep, and if not physically woken by an actual human being (I can unconsciously turn alarms off, sleep through them and even remove the battery from my phone) I will sleep a contented 16 hours.

    The hypersomnia is a difficult one to explain, because people usually just say to set more alarms or something, but it’s more than that. I might wake up, but staying awake? ha, now that’s a different beast altogether! I have sometimes woken up much later than intended actually sat on the edge of the bed, having tried to get up on time. Then there is something called sleep inertia, which is like waking up drunk, and usually lasts at least an hour, sometimes less with coffee.

    Now add on to that the drugs for my fibromyalgia, which leave me extra specially drowsy and we are getting onto very sketchy ground.

    Now add onto that the doctor increasing these drugs to try an combat the neuroprathy……

    So, How am I? well, if I am asked that at work, then my very presence suggests a positive!

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  8. You have said it so perfectly Sam! When people don’t understand how you can constantly be so tired, or when you are having a bad gut day but you sound and look perfectly fine so people wonder why you need a sick day. I still find it embarrassing to talk about my problems as have ileitis and peri-anal Crohn’s, so people don’t always want to hear about anal fistulars and seton drains!! It’s hard when you maybe can’t always participate in some activities and they struggle to comprehend why. I’m from New Zealand, so glad a post of yours popped up on my FB feed recently. You are so amazing and are going to help change the way invisible illnesses are viewed! Much love x

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  9. ‘People don’t know how to deal with chronic illness, both the person who has it and the people around them.’ really struck a chord. My daughter has chronic fatigue following kidney/ureter problems which she had from birth but weren’t diagnosed until her early 20’s. I’ve introduced her to the site. It’s meant I’ve felt I can do something supportive. Trying to support her long distance as she’s away at Uni, it’s so hard for me seeing her struggle and wanting to help and understand but just ending up annoying her. No, I don’t always ‘get it’ but I am trying my best. This illness has a huge impact on those around you as they are feeling equally helpless, frustrated, anxious and depressed. And guilt. Should I have been more persistent with doctors when she was younger? Did I do something wrong when I was pregnant? As I get older I can’t do as much as I could, so who will be there for her when I’m too old and feeble to help? Yes, take each day as it comes. But most of all remember to count your blessings. Keep up the great work Sam =)

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  10. Wow you said it sister! My own family cant wrap their heads around it, they keep saying time will heal all things and you will get better. Or they say cruel things like , well you look fine , you arent dead , you have had it all this time im sure you are used to it..

    Its a horribly lonely life when you have chronic illness, I know mine started in my teens. And led to isolation embarrassment and depression. As a teenager esp and being a young woman to have Ulcerative colitis was just the nd of my world , or so I felt. I did learn to somewhat deal with that, but later on in life I was hit with thyroid disease, then vasculitis , connective tissue disease ala lupus scleroderma mix, then add sjogrens syndrome into the mix. Life is miserable no doubt, unending doctors visits, medications, and tests, when all I want is to be normal. I am beyond tired, sleep when it comes does nothing to refresh people with chronic illness. And having people say just get some sleep and watch what you eat you would be fine..as if that will cure us. They will never understand till it happens to them, or you die from it. Then a light bulb will flash on in their head and they will get it. When I started getting sick with the newest batch years ago, my family swore up and down I was attention seeking, they didnt see anything wrong, after all I didnt look sick, I wasnt in the ER with a 105 temp and puking my guts out. That to them is sick, they cant believe you can have something that dont get better, it would have to kill you right?

    For all those out there who suffer everyday in some form or another, you are not alone. And even though I am not next to you holding your hand and listening in person. I do hear you, and I do understand.

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  11. I’m having one of these emotionally down days today, you know the ones where you wonder what the point is, you feel lost, useless, like the worst partner and mother in the whole world, like an emotional abuser, unable to think clearly which saps all motivation out of you and more? Thanks for sharing this post, it does help to know we are not alone. We all have our different symptoms and abilities, but we are not alone.

    I wrote an open letter that just touches on the surface of my conditions and how it effects my passion to write: http://traceyambrose.com/writing-with-a-disability-an-open-letter/

    Today I feel so brain dead and emotionally raw and negative that I can’t seem to make myself do anything positive, or, at least, feel positive doing anything.

    Reading your post has helped me feel less lonely if nothing else.

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