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

66 replies
  1. Tig
    Tig says:

    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.

    Reply
    • Natasha
      Natasha says:

      Thank you ladies. I have a hiatus hernia and hanging onto a job too. Always tired from disruptive eating patterns. My husband is not supportive at all and tells me I’m always sick. He just shouted at me for not making the beach today for an energized swim in the sea. I alsosay getting
      there a lot. I feel emotionally and mentally drained. Never mind physically . Thank you for showing me that I’m not alone.My name is Natasha.

      Reply
  2. Tig
    Tig says:

    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.

    Reply
  3. latebloomlisa
    latebloomlisa says:

    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.

    Reply
  4. Jenni
    Jenni says:

    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

    Reply
  5. H x
    H x says:

    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

    Reply
    • Mee
      Mee says:

      I was crying when I read your post even though it was a year ago because I know exactly how you feel and sometimes you fight but sometimes its really hard. I have an undiagnosed chronic illness well partially diagnosed I suffer from migraines but I also have pain in my spine feet and under my right rib, fatigue, vomiting grogginess, etc. I had to take a crappy night shift job because of the hours to pay ratio years ago but it was ok for a while then I got a new boss him and his pal another boss bullied me for a few years and I had to put up with it because of my illness (I put in a complaint to their boss but the situation got worse). Because of my illness and hours my friends faded away. Eventually I went part-time at work because my illness deteriorated and I could no longer go on the way I was. However it means I have very little money. My dad died of cancer a couple of years ago. And it was after that my best friend of 20 years faded away from my life. I get quite lonely now. I still have my mum but she has her own life looking after my brother and my nephew. Sometimes it gets quite hard. Being happy is like something that happens to other normal people. My flat needs so much fixed in it and my neighbors well their relatives are a bit of a nightmare. I wish one thing in my life was a little easier sometimes just one thing. Even when you have a normal type day, and you try to make the best and do something positive you do it alone because illness and my job has robbed me of friends and the outgoing personality I used to have. So life is hard and a struggle. Sorry for being a moan I feel guilty for that but I don’t get to do that normally . Sometimes I just want a hug, a shoulder to cry on. Sorry I am just having a bad day, and finding this website I found people like me, So I guess I wanted to reach out and share.

      Reply
  6. Ris
    Ris says:

    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.

    Reply
  7. Lizi Tizi Jones
    Lizi Tizi Jones says:

    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!

    Reply
  8. C Sandford
    C Sandford says:

    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

    Reply
  9. Quitefranklyimappalled
    Quitefranklyimappalled says:

    ‘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 =)

    Reply
  10. Diana
    Diana says:

    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.

    Reply
  11. Tracey Ambrose
    Tracey Ambrose says:

    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.

    Reply
  12. Jjf
    Jjf says:

    Try being chronically ill and alone. I had to quit my job over my illness and that was personally devastating. Also, my boyfriend of 3 years recently dumped me saying he never loved me. But I know he just didn’t want to be with someone who can’t work and is chronically ill. I was never able to have children which was the biggest disappointment of my life and was never married, but at 40 I finally met someone and thought maybe I could be happy without children so long as I had a life partner whoe loved me. But then a year later I got sick. Jade hoped for the best, but two years post diagnosis, I’m actually worse health wise. Before I got sick, at least I had a job I was good at and a boyfriend who I thought loved me. Now having been ill for over two years and told by numerous doctors my condition is chronic and will never get better, I’m a wreck. I see no joy in life. At least when I had my boyfriend I thought someone was there beside me keeping me going.

    Reply
    • Anna
      Anna says:

      I’m so sorry to hear about your circumstances. I hope the light breaks through the clouds for you. I can relate to your story. From another fellow sufferer.

      Reply
      • Natasha
        Natasha says:

        Bless you .I know how you feel.May you have more up days filled with joy and health. I pray God will restore every inch of your life that has been affected xxxx

        Reply
  13. Padraic
    Padraic says:

    I just wanted to say, that I find your website and story so inspiring. My girlfriend is chronically ill, and I see everything she deals with on a day to day basis, and badass is the best way to describe anyone that works through all of that and still lives and loves life. I have a website that I’d love to share with you, where I write about my experiences with her. http://www.witnesstowellness.com

    Keep being inspirational!
    Padraic

    Reply
  14. Sue W.
    Sue W. says:

    Well written and perfectly said…”Strumming my fate with her fingers….” (a take on “Killing Me Softly with His Song” if you are too young to know the reference).
    My keywords that brought up your blog were “how to make your life better when you are chronically ill.” Having someone else understand goes a long way toward feeling better. This was written way back in Feb so I’m eager to read what else you have written.
    I have Multiple Sclerosis and I am Secondary Progressive – this means that I’m past the point where drugs will help. It’s just downhill from here. I’m lucky in that I am steady on pain medications so the pain is minimal and handled. Dealing with the losses as they come is more difficult. Recently I’ve become housebound – leaving is just way too exhausting. I completely identify with feeling like a burden…I strongly encourage my husband to continue his life but it is very hard to hear about what fun he is having on his trips, etc. The green-eyed monster is HUGE.

    Reply
  15. Kiki Jennings
    Kiki Jennings says:

    Sam, you literally took my breath! I was reading as if it was me. I blog too. I’m going to share with my community. Thank you for your amazing words and spot-on frankness of what it’s like to live with a chronic illness. We are pretty incredible. #sobadass. Much love xx

    Reply
  16. Laura
    Laura says:

    Thank you all for your posts. I have had 24 biopsies in six months…22 for skin cancer and two yesterday on my female parts. My face is becoming more disfigured from the surgeries and today, while getting poked again for blood work three times, I exclaimed that I felt, “strung out” immediately I was asked…”What do you mean string out? What are you using? Why do you have all these sores all over your arms and face?” This chronic pain and daily changes to my skin with new spots coming up…and now a screwed up uterus…is causing me to become extremely distraught and depressed. I have the most wonderful husband, but I am feeling like I am a burden to him and anyone else in my path. I certainly don’t feel like a survivor with all of this chronic pain and don’t know what to do…except seek answers from blogs like this. Thank you for helping me not feel so alone in these feelings.

    Reply
  17. Anna
    Anna says:

    Thank you Sam for the article.

    I relate to the feelings associated with having a chronic illness except for the positivity at the end. Some days I’m positive and “well enough” too.
    Personally, I’d rather my condition be terminal than spend my days endlessly bedridden. In my case, I don’t really see this as a qualitative or meaningful life. I’m tired of the political correctness and feigned positivity. The question still remains for me – how does one truly have a meaningful life experience when tied to the bed?

    Reply
  18. AnnGregory
    AnnGregory says:

    I am so glad I came across this article you took the words right out of my mouth I suffer with chronic pain from a high school injury and it’s been a nightmare so to read your story bring me some peace to know I’m not alone thank you so much💚

    Reply
  19. msanonymous
    msanonymous says:

    Thank you for organizing this since I am really new, I do to have autoimmune problem – hypoparathyroidism, hypocalcemia. The illness is chronic and lethal. Its so rare that I’m to embartassed to share my symptoms, like how do we explained people that we have pains when people will be like “you are ill! why can’t you just suck it up and push it. stop complaining.” Thank you for saying, “I am exhausted from feeling stroger than I am.” its so hard to read your feelings. I am new with this, blessed to be mild but it can be severe any time and the fact I hate that I will face restrictions soon will block my dreams and I am only 21! And its almost a year. I am feeling what you feel on the bad days but on the good days I have people telling me that Im brave & trying to prove people that I can eventho it can can cause death.

    The saddest part is that when my colleagues&aquiantances know, they cried. Man, i do not like feeling the pitiful one but I appreciate their tears and concerns. So because of this not many of my family knows & my best friends knows. Telling your love ones is tougher than strangers, they see you crumbling away more than you do. How do I even announce to all? It sucks cuz I don’t want people to be treated me differently. 🙁 Its so bad that I have to wear a medical id bracelet, I seriously hope people won’t recognize the symbol.

    Reply
  20. Paul
    Paul says:

    I have the misfortune of suffering from two chronic illnesses (one rare; hypopituitarism) AND coping with all the medication that comes with a kidney transplant as well. The osteoporosis (DEXA minus 3) is now severely hampering my enjoyment of life. I can’t even play the piano for very long without suffering severe pain in my ribs and back. I try to cope and be stoical but I have done that for too long now and I am getting tired of it (I have suffered chronic illness since birth). I lost two treasured pets in the last few weeks and I have never felt grief like it. I just want someone to put me down now. I am one sick puppy. I really should have never drew breath on this Earth in the first place. I had no function to serve. I could not father children or work. I compose music, but it seems offensive and obscene to think that this is some sort of ‘raison d’etre’ to compensate for a lifetime of pain and suffering.

    Best wishes,
    Paul

    Reply
    • Liz
      Liz says:

      Paul, I’m so sorry about the loss of your pets. I lost my dog last month. I miss him so much. He was my only comfort on the bad days since my husband and kids don’t know how to be supportive. I have the same thoughts as you sometimes. I want to adopt another dog, but I’m afraid I won’t be able to give him the care he would need, so I’m putting it off, trying to figure out how I could manage it. I really don’t have any one to talk to about the negative emotions and the difficulties of being sick. Last year I let it get the beat of me, was so resentful and depressed. I decided to see a psychologist and told her I really just wanted to vent, which I did and it helped. Just that one visit. I hope you are feeling better by now. If you are still in a dark place please find someone to talk to. We all need that.

      Reply
      • Paul
        Paul says:

        Liz, I want to give up on life now, I really do. I don’t see a point in fighting nature anymore. Any beliefs and values I once held are now ground into dust. I have grown up very quickly in the past three years and I now see life as it really is.

        I don’t wish to be part of it, for it holds no happiness for me.

        Reply
    • Mee
      Mee says:

      Dear Paul,

      I know what its like to lose a pet. Its so much harder when you are ill because they give you great comfort and they don’t see your illness they just see you. And they care and love and you have no barriers in your love for them. Sometimes because of our illness we put up protective walls with humans in case they hurt us. We don’t do that with pets we just be ourselves and give our love and accept theirs and their is great comfort in their support. They are always their to give us a cuddle and lift our spirits. So I understand your grief because I lost my dad and my dog within a few months of each other and despite that soon after that my own illness worsened I had to be strong for my family. You are going to have bad days and its ok to be sad and grieve. Their are moments when our illness gets the better of all of us and we have our bad days and horrible circumstances bring all the bad feelings to the fore. You do have a function. You say you can play the piano or rather you have the ability to play and compose music that is an amazing talent and you say it has brought you joy. I am sure it has also brought others joy. What causes your pain when playing the piano is it sitting at for a long time could you try a tablet version of a piano while sitting in a more comfortable position. Have you asked your doctors for the possibility of using botox for pain relief. I don’t know if it will work with your condition but maybe its worth a try. Do you have friends or family in your everyday life. Is there someone who could play the piano for you, play your compositions? Perhaps you could teach someone to play the piano? I know its hard to believe right now but there will come a time when you long for a new puppy and this little life could bring some much needed joy in your life. In fact when your ready how about offering someone free piano lessons in exchange for walking your dog. Explain your illness in your advert. I bet there is someone out there who wishes they could play the piano but can’t afford the lessons but would be quite willing to give you a helping hand in exchange. It could open up your life a little and show you that you can be useful because you have a great skill which you can share. By saying that you could not father children or work means that over the years you have had those desires and that you still do it isn’t too late to try to find an outlet for those desires. You don’t literally have to have children in order to “father” them. I have a nephew who is now 13 and I have babysat him since he was a toddler – he understands that sometimes I can’t take care of him. But I have also had an influence on his life and the way he thinks. I have an interest in science which I can share with him. You have an interest in music which you can share. Take care and know someone out there in the world is thinking of you and understands your pain.

      Kind regards, Mee

      Reply
      • Natasha
        Natasha says:

        Hi Paul.I just want to send you a “Bluetooth hug” and to encourage you to keep going. No matter what. I’m going to start praying for you that your joy will return and that you will have fantastically good days. People who suffer like we do are hero’s. We can influence those around us with the power God has given us to persevere. God bless you and I Sen lots of love to you. Wish we all lived closer to be there for eachother. But hey this is a good start. Xx Natasha

        Reply
  21. Linda
    Linda says:

    I found your post when I was searching for information on the right to die. 13 years ago I was diagnosed with terminal metastatic melanoma. My prognosis was six weeks to six months to live. At the time I was a successful IT specialist I made close to $300,000 a year. I had become a single parent to two teenagers because I had been sick on and off over six years and something had to give. a What did was the relationship with my husband. We had separated 18 months before my diagnosis. I was an athlete and in such incredible shape the doctors kept telling me the lump under my arm was just a reactive lymph gland. All my tests came back normal so no one even considered that I might have terminal cancer. It was a shock to everyone my family my friends and especially the doctors. Less than a year before I was diagnosed I had just become an independent contractor because I couldn’t maintain a full-time job. I hadn’t gotten private medical insurance yet, so all of my assets that I had worked hard for over 20 years to earn went to pay for my medical bills that first year. I never expected to survive the Year let alone 13 years. At the time my only thought was to survive until I could get my children to adulthood. I was never offered chemo or radiation because I was past the point where any of that would have helped but I did have extensive surgery. Over the years I have had one surgery after another removing different parts of my body and organs that you can ‘survive’ without. I had complications from several of the surgeries one of which was an infection in my spine. So in 2010 they remove the lower 3 vertebrae of my spine. I was paralyzed from the waist down, the doctor said I would never walk again and yet today I walk. But I am chronically ill. I now suffer from multiple diseases that are much worse than the cancer ever was. I suffer daily with the Chronic diarrhea that you described. I knew there were other people that are chronically ill, but for all these years I thought I suffered alone. I lost my job, all the assets that I had worked hard my whole life to acquire,. all my friends faded away, my family gave up on me. When you have to sepnd all your energy just to survive each day you don’t have anything left to maintain relationships. Plus people don’t want to be around a constant reminder of how terrible life could really be. My family gave up many years ago after the 500 + hospital stays. My children become adults and started their own lives. I’ve been nothing but a burden upon them. Sometimes I wish I would have refused the initial surgery and died back then. I know now it would have been better for my children than what they have been put through watching their mother suffer. I know it would have been would have been better for me. I thought I was doing the right thing by fighting to survive so that I could take care of them of my children. I didn’t realize it would be them taking care of me. I have lived through terminal cancer, being paralyzed, years of liquid diets, pain seizures, hemorrhaging flesh eating bacteria the list goes on and on. It seems so unbelievable but it’s true my body just won’t die even though I wish it would! I have no one now, I’m all alone. Everyday is torture, I want to die but I don’t believe in suicide. I pray to any God that will listen for death. But please don’t think that the whole 13 years has been this way . Everytime that I have a good day I have hope , I think maybe this time I will be well. I haven’t given up I just don’t want to suffer anymore. When I read your post and the replies from others who suffer from chronic illness, I cried and cried. I know what it’s like to live each day in pain. I know how painful it is tolose everything you love. I know what it is to have your whole life be reduced to illness. I wish I was well enough to help all of you. I don’t completely regret having survived this long because I have learned so much about myself I learned to love myself and I’ve learned true compassion. I learned that every moment of life can be beautiful even the most painful moments. Thank you for sharing all your stories with me and I hope the best for all of you!

    Reply
    • Mee
      Mee says:

      You are amazing and brave and I bet your children really appreciate all you did for them. I bet they are grateful for the you and the fact that you struggled to be with them. I bet there are days when they wondered what would have become of them in the foster system if it hadn’t been for the fact that they had such a brave and wonderful mum as you. I think the problem is that even though they might think it they haven’t told you. Your children have been able to be strong and start having their own lives because of you. Somehow I think maybe you need to get them to make time in their grown-up lives for you for family time. When you are feeling down can you talk to them, now that they are grown up its ok for you to lean on them sometimes. I think you need a bit of support I think you have been strong for so long that now your children have their own lives and don’t need you to constantly be strong for them its like all your own problems that you hold at bay are hitting you and its time you needed a bit of support, its ok to reach out. Find someone to talk to, if you can’t talk then write. Write to your children explain how much you love them and are proud of them but explain that you are having a hard time and ask them to be there for you tell them you don’t want to be a burden on them (because I see that reading your letter) but that you just need a little support emotional support. And remember I don’t know you but in reading your letter I think you are AMAZING and BRAVE. Take care am thinking of you Mee

      Reply
    • Babar
      Babar says:

      Brave lady my breath was going away while reading about ur life…. Hats Off U Are Truly A brave Women Really feel Sorry for what u have gone through ur Whole life….
      May Allah Almighty Give u Reward Now Coz U have Suffered Alot.. 🙁

      Reply
    • Natasha
      Natasha says:

      Dear Linda. I just want to wrap my arms around you and Tell you that God has made you a warrior. You are a fighter and a survivor. The strength within you resounds in spite of what you’re going through.don’t give up hun. Keep fighting and inspiring . God has you in his hands and to celebrate life in the midst of such adversity is a rare and has a deeply spiritual significance. Im praying for joy and healing to enter you like never before. You have a huge destiny to help others. Bless you xxxx Natasha

      Reply
    • Serena
      Serena says:

      Linda, My name is Serena I just want you to know I will keep you in prayer. I understand to an extent I have been sick since 16 I have now had 356 blood clots I no longer have my main vena cava it’s destroyed from being clotted and an IVC filter that has collapsed and migrated to the bottom of my heart. I’m 32 now and with each passing year I find it harder and harder to keep fighting I have 3 young kids and a husband who is 5 years younger. I know he loves me dearly but I can’t help but feel Iv ruined his life and am a burden to him and my kids. I try so hard to keep up with everything but it’s true the mental battle is becoming a nightmare. I’m stuck to bed now with a clot. I’m on 240mg love knox shots daily but because I have a rare genetic mutation I constantly clot and I grew up in the hospital. I’m so tired but I believe whole heartedly that God has us all here for a reason and maybe it’s not for ourselves but for others to see his strength through our struggle. Or to give us the chance to know the love he has for us. I’ll be praying for you.

      Reply
  22. Liz
    Liz says:

    So well written. I’d print it and give it to my husband if I thought it would help him understand. I had to quit working 3 years ago. It took over a year for him to stop being angry about it.
    This morning, after several days of feeling very crappy physically, it really started getting to me emotionally. Stupid me, thought just maybe if I were to gently tell my husband what was going on he would say something comforting. It’s Saturday and he’s relaxed, watching TV in bed. I’m on the verge of tears and I lay down next to him, tell him I feel sick and I’m having trouble with it emotionally. He stiffens and says “Don’t you have a pain pill or something you can take?”
    I don’t think it’s healthy for me living with him. He resents that he works and I don’t. When I feel ok I think I can live with it. I know it’s difficult for him and I can still take care of myself. But, when I feel like this I wonder if I’m making excuses for him and think I’d be better off alone. Hard to know what’s best.

    Reply
    • Matt
      Matt says:

      Hi Liz, read your reply cos it was the last one! Right there with you and everyone else who replied. It really is such a hard path. Emotional roller coaster. The one positive is for me is it’s cut through all the bullshit of life. There’s no dreaming no fantasy. Life is so ‘real’. Chronic disease is always here to remind me how human how physical I am. A lonely hard path often. But life has good bits. Hope we all have lots. Keep positive. Matt.

      Reply
    • Mee
      Mee says:

      I know this is hard to hear but I think your husband is being an arse. And I am the type of person who only says bad words very rarely. There are many possibilities either your husband is emotionally stunted and can’t cope with you being ill. The main problem is lack of true communication between the two of you and the question is was that problem there before you were ill? Have you always been the one to take care of him as well as work? Do you have financial problems because you can’t work? He sounds very uncaring and resentful and is taking it out on you. The thing is you have to do what is right and best for you now. You can’t afford not to now that you are sick. First of all you have to find out his motivations, is he a selfish arse who only cares about himself or does he care about you but can’t cope with your situation and is taking it out on you? Hoping if he ignores the problem it will go away and get better and normal life will resume. I think you have to have an indepth conversation with him. The main thing you have to find out is if he still loves you and if you still love him. Illness sometimes makes us see people in a different light and maybe you are seeing him as he really is. Marriage is supposed to be in sickness and in health but things don’t always work that way. Maybe you both need counselling and support or maybe you do need to leave this situation and start again either way please don’t go on like this because neither of you sound very happy the way things are. Be Brave.and find out but also look out for yourself and sort out your support systems financial and emotional as well as a home before you jump.

      I think you also need to see where you stand legally its best to look at all your options. And do you have to be alone if your not with him do you have friends or family that could provide support for you. You need emotional support from somewhere. Is there a support group near where you stay. Its a difficult situation you are in but I don’t think you can go on with it find out if things are worth salvaging or not with your husband. I don’t know what you did as a job but are there any skills you have that you could transfer to starting your own home business on your own time scale. Could you use this to support yourself if you have to move out? Do you have family you could move in with? Do you have a mortgage with your husband? Does it have insurance because of your health situation that you could use.

      Best Wishes Mee

      Reply
  23. janice
    janice says:

    I just tender my resignation letter with a heavy heart because of my illness….
    I really hate it when i have to give up something i love …..i feel helpless…..sometimes i feel god is playing a trick on me.
    Why given’t me such a job with a good opportunity and yet taken away. I want to take control of my life, but i am feel helpless.
    I feel gulit….i should be make contributions and support my parents at this age. Yet i am feel like their burden…
    i feel so useless,,,,,honestly i don’t whether i will see light …..i really don’t know.

    I am mentally exhausted, my heart is tired with all those constantly battling of this autoimmune condition….
    The consistantly fighting of this illness , enduring all the pain and sleepness night..
    I envy those we great health sometimes…..those task seem so easy to them ….but
    seem so diffcult to me….

    I just want to have a good sleep, comfort bath and eat well…..and not worried
    one single thing about my skin problems…….all things seem so simple for others,
    but so diffcult for me
    .

    Reply
  24. Livia
    Livia says:

    You spoke it beautifully. I especially could see myself saying the part about being jealous about healthy friends… Like yes I am happy for them, but part of me wants to yell at them when they start talking about ‘exams’ or ‘dates’ as if they were problems…. I wish those were my problems, and i wish they knew how lucky they were…

    Reply
  25. Cee
    Cee says:

    This is exactly what I needed to read tonight. You encapsulated it so perfectly. I have endometriosis, fibroids, and ovarian cysts and it’s been six years of active pain, two surgeries and The Big One on the horizon (hysterectomy). I’m in my thirties so to say I’m not ready is an understatement! I have one miraculous child but had hoped for more so we have to let go of that dream. My new dream is a painfree life with the family I do have, whom I love with all my heart and I’m lucky to have support me.

    Thank you again for your words. I’m bookmarking and sharing this with my family and friends. It’s given me some peace on a very difficult night. Xxoo

    Reply
  26. Julie Howells
    Julie Howells says:

    With your post Sam, and reading all the replies, it shows we aren’t as alone as we/I thought. I for one can take heart in knowing there others out there who, while not all having the same symptoms or diagnosis, all basically feel emotionally the same…

    My name is Julie, I’m 49 now but for so long I’ve had something that ii didn’t even know was a thing or even had a name.
    Every 6 months or so over a period between being about 30 and 40, for no apparent reason I was slipping discs in my lumbar region. I’d go see the physio yet again who’d press so hard on my spine I thought she’d break it, I’d hear a dull pop and that was it… normality resumed. Little did I know that with all of this “Popping discs back into place”, would cause so much wear and tear that acupressure won’t work on my discs any more.

    So, a year or so ago I was surfing medical sites and came across a description of what happens with lumbar discs, the pain it causes etc, I’m reading more and more realising just how much of the article related to me. Seems it does have a specific name..
    Spondylolisthesis. I asked my doctor about this, he said that from looking back over my notes, yes, that’s what I have. I now have to sleep in a hospital bed in the living room. Anything low seated (chairs, sofa, stool) I can’t get up off, hence the bed so it can be risen to a point where I am almost standing, also I can’t lay flat at all or even close to it. For the last two years I’ve slept propped upright on the sofa. My GP called my occupational therapist in after my husband showed my GP a video of me firstly trying to get upright from laying flat, then my several attempts to get off the sofa. The hospital bed does help a lot but my husband and I got married later in life (both in our mid to late 30’s), so after only being married 8 years, I really really miss sleeping with my husband. So not only is my life a pain in the proverbial, it’s also so unfair.
    So that’s (the spondylolisthesis) now added along with my other lifetime “aches & pains” from my osteoarthritis in all main joints, cervical spondylosis (that’s the bony bit top of my spine, base of my neck), Raynaud’s disease, tennis elbow in both arms and arthritis in all fingers and thumbs.

    I had to buy a cheap tool box that has a deep base and a little tray on top just to keep the mountains of meds I’ve had over time in.

    In all these years I’m considerably lucky if I get two pain free days a month but like so many who have posted here, I do cherish every pain free day and spend as much of that time out and about with my husband.

    Many of your posts caused a tear or two, you all come across as remarkably strong people to be able to put up with and cope with/manage/struggle with the pain you’re in. It’s not easy by any means.

    Reply
  27. Lies
    Lies says:

    As a person suffering from depression for the second period in life, I really feel so much empathy for you, and all the people who responded to this blog. With all the suffering that life is bringing, I really wonder sometimes why we do it. Why we live it…. what is the purpose of fighting? I want to give up sometimes but I don’t as I know there is a good chance of getting better for me…. or not…. it’s not that deffinit or clear although doctors are always optimistic about my chances. ( I am not native English, forgive me my mistakes pls )
    This episode started without me noticing untill it was too late again. and I was riding on panick attacks to the office. Now I am sick for almost 3,5 months again, with no improvement at all. I started with the doctor who raised my medication. This made me sick even more and my hair started to fall out, I was feeling sick half the day and couldn’t do anything, and didn’t want to do anything. My mind was in continuous hell, and I hated myself for it, was so afraid to lose my boyfriend over this and my friends, I feel guilty towards him, towards my children, towards my parents…. ah the guilt part is such a b… My responce to the meds went all wrong to the point I was just shaking inside the whole time feeling pushed and sick like hell, and I called the emergency line. They gave me something to relax, and I slowly had to reduce the medication. Reducing helped and right now I am medicin free ( for this part) for the first time in 4 years. I started visiting a chinese doctor, who said he could help me ,but after 4 treatments and no feeling of improvement, I impatiently signed up for a possible intake for another treatment. My chinese doctor did not appreciate that, and did not wanted to continue treating me as I am clearly not having faith in what he is doing…. I am sorry you know…. I have a depression… i have no faith… i am desperately looking for help…. if you don’t understand that, then how can you be my doctor and find me the right solution. But it makes me so sad, it was such a kind man, and I did not mean to hurt him, But my search for solutions for my health pushes me to go on. When you suffer, you just want to try any solution to make it stop.

    In my search I found two treatments that may help one of you, TRE ( trauma release exercise) and BSR ( Body Stress Release)
    When you google it or look on YouTube it will give you information.

    My sickness is this brain struggle or heart struggle of loosing hope, of feeling shame, of being useless, of being stuck. And I would say: I’d wish they would cut of my leg, in stead of this, because that is something people understand. But to my shame I must admit, that being sick with anything… can cause the fight I am having with depression. Cause having another chronicle illness, causes also the depression struggle. I am sorry for all your pain and suffering. I am sorry for my ignorance. I am sorry that ‘normal’ healthy people will never really understand, untill they get hit themselves. I am sorry the world is full of it, and there is so little compassion. I’d wish I had more compassion myself and more love and less fear and brokenness.

    I did learn something from my first episode…. I learned about friends and love. Right now I am in the second episode, and I hope to get out again and learn again. some day….

    I hope my writing is not to fragmented. I now my brain is, but I hope you will Judge me with kindness.

    Reply
  28. Eric
    Eric says:

    Very well said. For 2 years I have been living with a rare disease called fibrosing mediastinitis. Scar tissue had taken over a couple major veins that return blood to my heart and a portion of my right lung. Had one surgery where they removed a small piece of my right lung that had a mass and another surgery (sternotomy practically heart surgery)to try and repair( as best they could) my damaged veins. There is an inoperable mass still in my chest about the size of an egg that they can do nothing about because it is encased and surround with scarring and trying to remove it could damage something vital. One of the repaired veins closed about a month after the surgery and had to be stented. The dr that put the stent in said that it likely won’t last because there isn’t enough flow/pressure in veins to keep stents clear. The dr that did my heart surgery and diagnosed me with the fibrosing mediastinitis said that all they can do now is try and keep the veins open with stenting. That the fibrosis would likely spread and eventually close everything down. The worst part is that because it’s rare there is not that much info out there so I have no clue how long that could be. Now I take aspirin and Coumadin everyday for the rest of my life. I also take narcotic pain meds cause I hurts every time I breath and worsens with deep breaths like someone is stabbing me in the back. I get tired fatigued very easily and can’t do 90% of the things I used to be able to. As anyone with chronic illness / pain probably knows this has changed me. I feel like a shell of the person I used to be. I have pretty bad depression from this also. I feel like I try my hardest from day to day but it isn’t easy. Now my wife of 11 years wants a divorce and I just don’t know if I can continue fighting this fight alone. But it is true. When I was healthy I never thought about how chronic illness/pain could affect someone. And I probably couldn’t of comprehended how hard it actually is. I know I should be glad for those good days I have and cherish them but that is hard also in the grand scheme of things. Thanks and prayers to all others who are going through similar stuff.

    Reply
  29. Mervyn Thomas
    Mervyn Thomas says:

    Yep, I have spent my life caring for other people, I am a priest. But over the last 6 years I have had to accept that I am not someone who cares for others, I am someone who needs to be cared for. My whole identity has changed. This is the most challenging experience of my life.

    Reply
  30. Jen
    Jen says:

    Well, you summed up how I feel. The fact that you never know what a day will be like, feeling like a burden and that your body, in my words, are letting you down, broken and without hope of mending. I cried, reading this. For multiple reasons – recognition, knowing I am not alone and also empathy (I am far too empathic for my own good, I can’t read or watch ‘regular’ news).

    Me, I have constant pains, I eat pills to kill nerve pain, I have pains that seem to ‘move around’ (in other words, new pains, old gone) and when something goes well something else comes along – main issues are my legs, can’t walk far (compartment syndrome, both legs) and now, since I tripped a few months back and had nothing in my feet to keep my up, I caught myself entirely with my arms. Now, both my wrists and shoulders are in pain, varying from day to day. Having it checked up on at the time of writing, but it is another hurdle, being unable to lift things or even carry heavy things. All I want to do is work and provide for myself, but instead I feel like I am a burden, as you too say.

    Applied for some partial retirement, but of course they turned me down, claiming there’s no proof that my ability to work not reduced by at least 25% (while doctors all say that 50%, top, perhaps not even 25% capacity). That process dragged out a year and more. I have few friends due to moving and now not being able to go outside very far on my own, so I am alone a lot. Husband works 75%. And with being more stationary come weight, and with weight comes less mobility and, yes, there is a vicious circle. I feel ugly in addition to all the rest and even though he says I am not, I cannot seem to quite believe him, not any more. Suspect that is more my self image than anything, though.

    Also I rarely get a full nights sleep, thanks to chronic clogging of the nose. Huzzah. Not only do all these pains tire me out, but I can no longer recall the day when I woke up feeling rested. If I wake up with less pain than usual it is a ‘good’ morning.

    And now I feel like an old lady (that feeling like a 100 year old is so true) complaining about everything, ha! Guilt, this is your cue, come hit me over the head with ‘Welcome to the rest of your life, all of those decades!’

    Reply
  31. Hayley May
    Hayley May says:

    Well I cannot even work. I am mostly housebound, I’ve had good days where I’ve felt mostly normal, but lately just having a lot of bad days. I feel like a burden to my family, and morbid thoughts flash through my mind a lot. I do feel like a failure, like my body/brain is defective, and really what’s the point of being alive, just to survive?

    Reply
  32. Patti
    Patti says:

    Has anyone completely isolated themselves to the point of almost no contact with anyone ? I don’t even need a phone because I barely text and never talk on the phone. Forget about doing anything with anyone. I feel like such a loser ,scared, lonely and trapped. This has gone on for so many years that I don’t know how to break out of this horrible pattern. I’m no youngster either and as the years go by this is scaring the crap out of me. Doing this alone … forever….

    Reply
  33. Sherry
    Sherry says:

    Your post is so true for me. I’m on vacation right now, just my husband and I. I have Lupus and my legs feel like they are filled with concrete, they do not bend. I am in so much pain all the time. He understands and is always caring that I don’t fall and helps me to step down. Today he said I wish you were able to ride bikes or go hiking with me. I could go alone but I really would love your company. It is breaking my heart. There is nothing I can do. It is not fair that his life is altered because of my disease. I try to make the most of every moment when we do anything special so that I can look back and remember that I did do something special even if I sat on a bench and people watched all day. My husband is out walking Main Street now and I am at the hotel resting. Just feeling like a burden at the moment. Thanks for your post. It made me feel less alone.

    Reply
  34. LK
    LK says:

    How well , you describe what I am feeling – all of it but especially ‘ I am exhausted trying to be strong’ and the feeling that my body has been taken over . I have tinnitus which over the last nearly five years has got louder 9 nothing masks it) , it is now accompanied by a range of deferred pain in my neck , jaw, head , eyes , teeth. Relaxing and resting is almost impossible , just as it would be under a fire alarm or an emergency vehicle siren. I have many symptoms of chronic fatigue and each day drains me of of hope . My life is getting smaller and smaller as I can’t bear sound or quiet. I am told to be positive , that it’s just a noise – even from within the ‘ tinnitus community’. I am hanging on – just. Thanks for reading ( if anyone does) x

    Reply

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