Sunday, 5 August 2012

Living With An Invisible Illness

**6 years later and I finally have my illness under control to the point I rarely get daily pain, flare ups happen biannually rather than weekly and I've been discharged by my specialist! Read more here**

It's taken a long time for me to write this post when I haven't even really discussed my illness in this much depth with those closest to me. It's something I'm trying to be more open about, but it's hard to write about something that you still haven't come to terms with yourself, so please bear with me if this seems a little jumbled!

From the age of around 4 I've been suffering from what I now know is interstitial cystitis/bladder pain syndrome. It's a chronic autoimmune illness that, according to Erin Barker and her insightful yet funny podcast, is like a bladder infection but the pain is 1000 times worse and it never goes away. Wikipedia states that 'the disease has a profound effect on quality of life. A Harvard University study concluded, "the impact of interstitial cystitis on quality of life is severe and debilitating". A Harvard Medical School guide states that the quality of life of interstitial cystitis patients resembles that of a person on kidney dialysis or suffering from chronic cancer pain'.

I've only recently found out I have IC after years of baffling different doctors and trialling different medication that never worked, until eventually they gave up trying and it went into remission by itself around the age of 11. It came back with a vengeance at 19 just in time to ruin my second year university exams. Since then I've been in and out of hospital, until last year when they told me it was IC and that there wasn't much they could do for me. I've tried different treatments, and nothing seems to work except for resting when I have a bad flare up, but apart from going pale with pain and getting a high temperature nobody would ever guess there was anything wrong with me.

After I found out it was something with no recognised cause or cure, I adopted the 'you only live once' approach, and ignored the recommended diet and stayed in denial about the whole thing. However, over the past 2 years I've gotten progressively worse, and I've had to come to terms with the fact that this is something I'm going to have for the rest of my life, so adjustments need to be made.


Giving up caffeine was the hardest, because I was a total tea addict before this. The IC diet is very strict, and I have to be really careful what I eat now. Thankfully they have an app so I don't have to carry lists of what I can and can't eat in my handbag, but it still makes it very awkward if I want to go out for a meal with friends. Having to decide whether food is 'bladder friendly' before you can eat it is definitely something I'm not going to get over any time soon!

I've also joined a lot of online support groups. I can't stress how amazing it's been meeting people that have gone through the same things I have. Before I got a diagnosis, I was starting to think it was all in my head! There's only so many times you can explain to a doctor that you can't move because of the pain your in, just for them to tell you according to all their tests there is nothing wrong. I've also found out my condition is one of the more severe cases of IC and I have to have a lot of downtime due to the amount of flare ups I get. I have constant abdominal and back pain, but over time I've gotten used to that. Even the fact when I need to pee I have to go straight away is like an inside joke with my friends since my stages of urgency tend to involve stupid little runs and dances. But when it gets bad, it's insufferable. It happens with no warning, and can flare up just for a day, or it can leave me in crippling pain for months.

It means I'm probably never going to be able to have a full time job, and if having children means they have an increased chance of inheriting the disease, that is something that is probably never going to happen for me. I honestly wouldn't wish this on anyone. Thankfully I had already decided I wanted to run Little Miss Delicious full time before I knew that I'd never be pain free, so I'll always know it's a decision I made on my own terms, not something I had to do because of my IC.



Some days even walking to post office is too difficult, but I'm so lucky to have so many supportive people around me that help on those days (as well as my stylish leopard print hot water bottle!), so my illness never affects the running of Little Miss Delicious, apart from the times when it gets too much and I need to take time off. I just justify it to myself on the basis that nobody works 7 days a week 52 weeks a year anyway!


Some of the few times I have spoke to people about it, I get responses like 'but you go out, you can't be in that much pain' and someone once said that it's just 'a little back pain'. I wish there was a way to make people understand how much these comments hurt, and just because I look ok and try to have a normal life, that doesn't mean I'm not in constant chronic pain. If I do something that involves leaving the house it means I'll be too ill to do anything the next day, and most nights I sleep with a hot water bottle to stop me crying from pain, yet to anyone that passes me on the street I look fine. 

If you've read this far, thank you so much for taking the time to do that. Hopefully by talking about it and raising awareness, more people will understand that just because someone looks fine, you have no idea the daily struggles they face. I've met so many people who have invisible illnesses that affect their everyday life, but they still manage to do everything with a smile on their face and it's just so inspirational. I'm always going to try and be as active as I can, because I still have the 'you only live once' mentality, I've just had to adapt it around my illness now. But I still won't let it define who I am.

I'd also recommend reading The Spoon Theory by Christine Miserandino, it explains everything so much better than I ever could.



21 comments:

  1. I totally understand how you must be feeling- I don't suffer from IC, but I have suffered from chronic back pain for two years, and when I'm now running my business full time, it's kind of very unbearable at times, and I always feel guilty for it. Because of this, I suffered through my time at Uni as well.

    I think though that you are totally an inspiration to me that you still run your own business despite what you go through- not many people would choose to do that, this is what some people need to understand!

    Anyway, enough rambling :).

    I love your jewellery and you're an amazing person :)

    Katherine

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    1. whoops, I meant to add *feel guilty for taking a break from the business when this happens* xx

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    2. I'm so sorry to hear that, and thank you so much! I totally get what you mean about feeling guilty, but it's just about learning to listen to your body and know when you're taking on too much. I'm going to start looking into getting an intern to help a couple of days a week to try and relieve the stress a little! And I just don't even speak about uni days anymore haha - I missed my second year exams as I was in hospital, and did my third year while on tramadol and having to go to A&E after each one! Such a mess xo

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  2. Well done and thank you for writing this, you're amazing! I too have an invisible illness and can relate to so much of what you say here. I am following the IC diet too, that app really is a godsend!

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    1. And thank you for reading! I don't know what I did before the app! I also have one to help me find the closest toilet, they really do have an app for everything haha. Cutting out caffeine, alcohol and chocolate has been the hardest for me, but I'm starting to find it second nature to check if things have preservatives and things in them. Hopefully it'll make a difference! xo

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  3. What an honest, well written, well researched, post.

    Chronic illness, of any kind, is so difficult to both manage, and explain, that sometimes you feel like not bothering.

    Getting a diagnosis is often said that it is the 'first steps' but they don't say that it's the first steps in about 100000 marathons!!

    x

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    1. Thank you, and thank you for taking the time to read it! Getting a diagnosis took nearly 20 years for me, so it's a bit of a rubbish first step! But it's nice to be able to put a name to what I have, now I've just got to learn to live with it xo

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  4. thank you for sharing, sincerely. As someone who's been in chronic pain every day of their life they can remember it's tough sometimes for "the others" to really understand the implications. By doing things you know you'll suffer for it, but it's a decision that you weigh up and then decide if it's worth the cost. I hope that you manage to get the diet to become second nature and don't have to focus on it too hard, but then again, if focussing on it takes the focus off the pain then give it a good ol' Paddington stare! Thank you again for sharing chick xx

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    1. I think sometimes people forget that you can't judge someone based on their physical appearance - you have no idea what anyone has been through or has to deal with on a daily basis. I know exactly what you mean about weighing up the cost, that's why I really like the spoon theory - it helps explain that in a way people can understand even if they haven't been through it themselves. Haha, I've never heard anyone use Paddington stare before - might have to steal that! ;) xo

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  5. To a significant extent, I understand completely how you feel. I have had M.E now for 6 years, and at the time I truly believed that it would go away, as my doctor said in some cases with young people, they 'grow out' of the illness.
    I still have M.E, but not as volatile as it was originally, but in the process it has claimed my independence and my ability to live life to the full, which is heart-breaking.
    I found what helps me the most, is just listening to what my body wants. Once I learned it was not a battle against an illness, but just a battle to work with my limits, things have gotten easier, and I hope things get easier for you to, as you adapt your lifestyle! xx

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    1. I'm glad it's getting better, but I'm so sorry to hear about your experience. That's great advice, and something I'm still learning to do. Thank you! xo

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  6. Thank you for having the bravery to share this - I really needed to remember that I'm not alone in feeling like this today! I have had ME for 19 years. I set up my own home-based business as a way to give me something to do because I couldn't go out and socialise and do "normal" things like everyone else. My friend pointed me in the direction of your site because I was struggling today with having to tell people I'd never really met that despite looking normal I wouldn't be able to walk to the oub with them, so I'd ned to know exactly where they were going so I could get a lift from my MUm - all things I'd really rather not have told them, ever and definitely not before they got to know me. Sometimes it feels like life would be so much easier if I had big red spots or a plaster cast.

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  7. Thank you so much for sharing, you truly are an inspiration. It takes a very strong individual to open up & be so honest :)

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  8. Aw hun, you're such a strong person for dealing with this so well despite the constant pain. I don't think any of us could ever understand just what you go through unless we had it ourselves so try to ignore the ignorant comments.

    I guess it's kind of even more motivation to be the best you can be in your self-employed career as this is the best option for you due to your illness so it's so good you're successful with it and have a great support group there to help.

    Very inspirational, I'll be remembering this next time I begin to moan about one of my headaches.

    xxx

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  9. I think its very brave of you to come out & talk about your illness, i've never heard of IC before & i feel my eyes have been opened to something i've never known. Its very inspiring to hear about your story especially being such a fan of your work. You have proved that even if you suffer with an "unseen" illness you can still have a life of your own, become successful in your own right & still have a career.

    Thank you for being so open & honest, shame more cant be like you :)

    xXx

    http://ipixiee.blogspot.co.uk

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  10. As the lady so perfectly puts it above - very inspiring and has certainly opened my eyes!

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