Chronic Illness: My Story…

This is my story of what it’s like being told you have a Chronic Illness. This post has taken me weeks to write and I wasn’t even sure if I was going to post it. But hey, what do I have to lose?

It would be nice to hear “Feel better soon” or “Get Well Soon” and for those words to actually mean something. I have an illness that I’m never going to get better from. There is no cure, it will be with me forever and the sad thing is that it’s only going to get worse.

The physical pain is hard. Every single day I’m in pain, I struggle some days with basic tasks like climbing the stairs or just lifting my arms. Mentally this illness is devastating. For me I feel like I’m a burden, I constantly feel guilty. Therefore most of the time I keep my feelings to myself, why would I want to share them?

It’s so impossibly hard to fight how you feel emotionally. Normally if you’re sick you get your diagnosis, have treatment/medication and get better. When you have a Chronic Illness you don’t have that. For me being diagnosed was tough and finding out that treatment wouldn’t necessarily make me feel a lot better was horrible. I have been through so many tests. I’ve been stabbed with needles more times than I can count, at times it’s bloody hard to deal with.

With a Chronic Illness, no two people are the same. Symptoms vary which can make a diagnosis very difficult. With a Chronic Illness, everyday is different. You can’t plan anything. For me, this has been the hardest part. I can’t plan to go out for meals because I don’t know how I’m going to feel on the day. It’s tough not to get down about this. Normal people can enjoy life and plan to do things. Currently, I can’t.

Since telling people I have a Chronic Illness I get a lot of “How are you feeling today?” normally I just lie and say “I’m ok”. I don’t share how I’m really feeling because people don’t understand and that’s ok. I don’t expect people to understand. A lot of people think after I take I’m medication I’m fine. That isn’t the case. I take my medication but I’m still sick and I’m still in pain, explaining this to people is difficult. They don’t understand why I take medicine if it doesn’t make me feel 100% better.

Yes, I get ok days where I feel human but the majority of the time I feel awful. I have been diagnosed with an autoimmune disease. My body is fighting itself every single day. I have numerous symptoms. A lot of them decide they want to join me all at once. (YAY – symptom party). Other days I’ll deal with a couple – these are my good days.

I’m drained. I feel like my body has failed me. A lot of the time I put on a brave face. Inside though I’m falling apart. I’m constantly exhausted. I feel like I’m not good enough. I feel like I’m a nightmare to be around. I feel like everyone is walking on eggshells around me. Some days I feel embarrassed because of my illness. But why? It isn’t my fault.

I’m hoping that one day there will be a cure. That I won’t have to fight every day to feel ok. That I will be able to live every day without medication and just be normal.

Since I’ve been diagnosed I try to be positive. There are people out there who are going through a lot worse than I am. Some days I do feel sorry for myself and just want to curl up in a ball and cry. The majority of days I get up, put my makeup on and go to work.

This is my life now. I cannot do anything about it. All I can do is live with it. When I get a good day and I’m able to have fun with James and actually get out I treasure these days so much. They mean the world to me and that is a blessing. I’ve learnt to appreciate the simple things in life a lot more. Before I just took them for granted. I’m looking after myself a lot more and in ways I’m learning to be selfish. I’m doing things for me.

I’m a stronger person now and I can deal with this. I’m going to hit some bumps along the way. But I’m going to be ok, I have to be.

If you know someone with a Chronic Illness. Ask some questions. We don’t mind. From my point of view the more you talk about it the more awareness is raised.

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13 Comments

  • Reply Rachel

    Great post. You really are bringing more awareness of chronic illness by writing this. You are a very strong person to deal with it everyday.

    February 10, 2018 at 8:27 am
    • Reply hellolaurax

      Thank you.

      February 10, 2018 at 5:14 pm
  • Reply TheDailyEverything

    Wow. What a read.
    You can feel the emotion behind this post and it has opened my eyes to the consistency of the pain you suffer with. All I can say is I think you’re super brave and that you should never ever be embarrassed.
    I can’t empathise, but I know that if that was one of my loved ones I would just want to make it go away!

    Thank you so much for sharing, it’s a really important post.

    R x

    February 20, 2018 at 6:03 pm
    • Reply hellolaurax

      Thank you so much x

      February 20, 2018 at 6:04 pm
  • Reply Samantha

    Good morning Laura
    I hope you are feeling good not better as we know there isn’t that ?
    I have crohns and m.e and I’m struggling but your posts are uplifting and comforting .
    One day at a time and I wish every happiness .

    February 25, 2018 at 8:17 am
  • Reply Andie

    I was diagnosed with fibromyalgia 3 years ago and my sisters are still confused as to why I’m not better yet.

    I hope you’re feeling okay today and thank you for sharing your story xx

    March 5, 2018 at 5:34 pm
  • Reply Emily Dravnieks

    Fab post. I’ve had trigeminal neuralgia ( facial pain) for quite a few years now and every day is different: Up and down. I’ve changed my diet, my lifestyle and it’s become more manageable. I still get people saying even now – you still got that or why haven’t you done something about that. So frustrating. Luckily my husband really understands and that really helps. One day at a time is my motto! Much love :-)xxx

    March 25, 2018 at 5:23 pm
  • Reply This Vet Runs

    You’re so brave for writing about this, and for being honest about how bloody hard it is! We’re all meant to say we’re ok, all the time. But actually it’s fine to not be ok, and lots of people want to know the truth when they ask. It sounds unbelievably hard, but you’re one strong lady! Keep fighting xxx

    May 2, 2018 at 4:13 pm
    • Reply hellolaurax

      Thank you so much! It’s one of those things that a lot of people won’t talk about but I want to try to help people xxx

      May 3, 2018 at 4:38 am
  • Reply Melanie

    As someone with a rare Neuro chronic illness, i hear You!! The life you knew has gone and embracing a different one can be a hard challenge. I too feel embarrassed by my illness….why? We didn’t ask for this and certainly would give it back without doubt. Good luck to you and all that you do.

    May 7, 2018 at 5:38 pm
  • Reply The Frozen Mind (Jen)

    Sharing is hard. It is so easy to say, I’m ok. I have started answering that question by say, “Hanging in there”. It is really not an answer but it amazes me how many people just say ok, good. They are asking out of as much habit as we are answering by saying l’m okay.

    Thank you for sharing!

    June 8, 2018 at 5:46 pm
  • Reply Lucy

    Wow! My mum suffers from fibromyalgia and is very similar to you, achey all the time and unable to plan things, gonna show her this x

    June 19, 2018 at 7:26 pm
    • Reply hellolaurax

      Sorry to hear about your mum. It’s so tough having an invisible illness x

      June 20, 2018 at 9:55 am

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