An Open Letter To Ignorance Around Invisible Illness!

Hey everyone!

This year I told myself I’d space out the beauty posts and do a bit more writing around my illness on my blog to raise awareness. For people who don’t know, I got diagnosed with Ulcerative Colitis in April 2017, a form of Inflammatory Bowel Disease. This completely turned my life upside down and I’m on a pretty bumpy journey at the moment trying to heal my body with the hope of becoming relatively healthy again at some point. I hope to be brave enough to properly share my story on here one day but this is going to be where things start.

People have treated me differently since being diagnosed because I’ve had to adapt my life. I’m not able to do all the things I used to, I wouldn’t say I’m a different person but I’ve definitely changed – in some good ways and some bad but I’m working on it, aren’t we all? But anyway, here are a few things I’d like to put out into the world about my feelings on people’s recent ignorance towards me and invisible illness in general, enjoy…

Just because you do not understand, it doesn’t mean you cannot try to.

I don’t and never will expect anyone to fully understand, I don’t even understand it half the time. How I went from being a fully-functioning healthy human being to this is literally so depressing. If you care about or even just know someone with an illness, it doesn’t take a lot to pop it into google. Or hey, you could even try having an actual conversation with them and ask how they’re doing – just a thought.

Do not question me or my limits because I “look/seem fine”, I know what my body can take, you do not.

Something I’ve had to deal with recently is people unfairly judging me because I’m unable to do things they can and making me feel uncomfortable because of it. I’m not going to apologise for it because my illness isn’t my fault. Do you really think I like being the person that always has to leave early and miss out on things? One night of a few drinks and getting in at 4am causes a lie-in and a bit of a headache for normal people, for me it’s likely to cause hospitalisation or even worse. If I say I can’t do it then I mean it, I’m not going to put my short and long-term health under massive pressure to please anyone and no one should ever expect that from me either.

I would do anything to not be stuck with this and be able to live like a normal person. 

I miss the old, “normal” me every single day. I miss being able to have the odd alcoholic drink. I miss being able to eat what I want, when I want. I miss having a full time job or being able to work at all. I miss nights out with my friends. I miss waking up and knowing what my days going to be like instead of wondering how much pain I’ll be in, how far my little amount of energy will stretch and if I’ll be able to leave the house today. I miss having a great social life and going to the gym. Don’t ever think being chronically ill is an easy life for any reason.

Don’t make me feel guilty because I had a good day or because I can hide my pain.

Yes every now and again, my body gives me an easy day. Easy meaning minimal symptoms and a bit of extra energy which with any luck, on these days I can try and do normal people things. Just because you saw me wandering round the mall, wearing a full face of makeup or supporting my boyfriend at his gig doesn’t mean I’m lying or exaggerating about what I’m going through. I take daily medication and pain killers on both my bad and good days, some days they don’t even seem to work. And I’ll do anything and everything possible to support the people I love, no matter how ill I am.

Chronically ill people are extremely strong.

Think about how hard life is normally. The heartbreaks, the failures, the constant ups and downs. Worry about the future, regrets about the past, loss of loved ones. Short-term illnesses, money worries, the list goes on. Now imagine having to go through all of that with your body also having its own battle with itself and hindering you from doing a lot of things that healthy people don’t even think twice about. Don’t underestimate the strength of someone who is chronically ill. At the risk of sounding cheesy, we’re pretty badass.

I could go on but I feel like I’ve got my main points out here. It really doesn’t take a lot not to judge someone for something they cannot control, even if you don’t understand it. Just listen, be a compassionate and kind human being. All you need to know is that I am trying way harder than my best. You never know, you could be writing something like this one day.

’Til Next Time,
BTB Xx

45 Comments Add yours

  1. Lily says:

    Such an eye-opening post! It’s so easy to gloss over invisible illnesses, especially when people can seem fine. You’ve made me more conscious of my efforts with people in my life who might have a chronic illness – fab post, also hope 2018 is the year of you getting better xxxxxx

    1. blacktulipbeauty says:

      Thank you Lily 🙂 the aim of this post was definitely to make people think a bit more so I’m really glad it has done that for you! Aah thank you so much, me too! Haha Xxxxxx

  2. Alice says:

    I can’t even imagine how ignorant some people must be, my best friend that had CF always used to get such ignorant and inconsiderate comments and it used to piss me off so much. People don’t understand how much you wish you could physically do things, it’s not like you’re doing it out of choice or to spite anyone. I hope you know that you’ve got me and the other Blogger Babes too, I would happily sit in and do Disney jigsaws with you and skip the crazy clubbing nights! Also, that photo of you and Nacho is my new favourite thing xx

    Alice
    http://www.accordingtoalicex.com

    1. blacktulipbeauty says:

      They really don’t understand and it breaks my heart sometimes that they could be so inconsiderate. As if I want to be this way! I do 🙂 you guys are some of the best pals I’ve ever had! You’re always welcome to come and stay with me and Nacho and do some puzzles 🙂 Xx

  3. Francesca says:

    Wow, you’re such a strong and brave person! If you ever feel like you need someone to talk to I’m always here! I’m so glad you decided to write a post to raise awareness about invisible illness – also that photo of you and nacho is adorable!xx

    Francesca | EverythingChessie 🌿

    1. blacktulipbeauty says:

      Thank you so much, I honestly really appreciate that 🙂 I have surprisingly had a lot of support on this so I’m so glad I decided to post it! Thank you hehe, she’s honestly been such a saviour while I’ve been ill! Xx

  4. It’s soo brave of you to put a post like this out there and it’s definitely important to raise awareness. Luckily, I’m not one of those people who judge others and assume they’re pretending – I like to think I’m quite an understanding person. I can only imagine the pain and suffering you’re going through and that breaks my heart because you’re one of the loveliest girls ever! I really do strongly hope that things get a lot easier and better for you one day and you know you have my complete support. I’m sorry that you have to deal with small minded people that don’t even try to understand what you’re going through on a daily basis, that really does suck. At least you know the important people will stick by you and show you support. Sending huge amounts of love your way girl xo

    Char | http://www.charslittleblog.co.uk

    1. blacktulipbeauty says:

      Thank you so so much for your lovely comment, you’ve no idea how much I appreciate it! I would never think you were one of those people after talking to you, you seem so lovely and have been so understanding! I do have some really lovely and caring people around me who do their best in trying to understand and look after me and I couldn’t love them any more!
      Thank you so much 🙂 Xx

  5. Jasmin says:

    Oh wow, you go girl!
    It’s amazing that you opened up & wrote about this. It always surprises me how ignorant people can be towards people suffering from invisble illness.
    I can so relate, can’t remember what my life was before rheumatoid arthritis.

    I hope you’ll feel better soon 🙂 good luck with everything and I hope 2018 treats you well 🙂

    lots of love, Jasmin
    // littlethingswithjassy.com

    1. blacktulipbeauty says:

      Thank you so much 🙂 I’m proud of myself for doing so! It surprises me too, to a certain extent it makes me feel like they think I’m lying! I hope you are coping okay, my nan had arthritis and suffered really badly with it 🙁 you too lovely <3
      Xx

  6. Alicia says:

    Thanks for sharing this, I found this such a powerful read as it was so personal. It saddens me that people can be so ignorant and just incorrect in the way they treat others! I just hope by you spreading awareness will help prevent these silly comments/issues and hopefully help education people on your illness and how to deal with other people who have an invisible illness x

    1. blacktulipbeauty says:

      In my opinion it really does just come down to having compassion for others and I’m not sure why that’s so difficult for some people! I didn’t write this to sort of “tell anyone off” but just to make people think of their actions and how it can affect people who are already going through enough without the constant judgement. Hopefully it helps if even a little 🙂 x

  7. Gabrielle says:

    LOVE THIS POST! I can relate to so much of it at the moment having had one of the shittiest years of my life in terms of health – I think your physical health has a massive impact on your mental health too and just because you’re face is (very beautifully – ngl very envious of your dandy hand with make up!) made up face, doesn’t mean you’re not struggling! I hope that you start to get there with your ulcerative colitis (scrolled back up to the check the spelling and very proud I got it right 😉) and you can get some more stability in your life. ❤️❤️❤️

    1. blacktulipbeauty says:

      Thanks Gaby <3 I know you get it! It definitely does, especially when you spend a lot of time indoors and on your own, it has a huge impact on your mental wellbeing! Thank you you big cutie <3 some days I feel like I need to put my makeup on to feel like a human, I shouldn't get judged for that! Oh man I really hope I do too haha, It'd be so nice to feel relatively normal again! I really hope things continue to get better for you! Xxx

  8. Liz says:

    You are so strong for going through this every day! Whilst I don’t have anything as serious as you, I have times with my illness that I’m lay in bed and can’t move! It’s so horrible to be people being so ignorant but those people aren’t worth it! You seem to have a great support system around you and if you can get up and go shopping then go for it! I hope you get better and get the treatment you need!
    Liz xx

    1. blacktulipbeauty says:

      Thank you so much for your comment 🙂 It really can be so disheartening and hurtful, I hope that you’re as well as possible with whatever you have girl! I do have some really lovely people around me and I’m learning to ignore the shitty ones! Thank you very much, I’m keeping hope that it won’t be too long! Xx

  9. Emma says:

    Your so brave posting this. I totally understand your struggle. I have PCOS and it can be hard getting people to understand how you feel when you “look fine”. I really hope you feel better soon❤️

    1. blacktulipbeauty says:

      Thank you so much 🙂 I’d never expect people to fully understand but it’s just thinking more about what people are going through and just simply being nice about it to make their life easier, you know? Thank you, I hope you’re doing okay! Xx

  10. Wow – what a great post! It’s amazing you have posted this – you are so brave! I hadn’t really heard about this before, so it’s amazing that you are helping to raise awareness of this. People can be so clueless and rude about certain illnesses (especially if you can’t see it). It’s so sad – it makes me think “imagine if you were in their shoes”.. I’m 100% sure they wouldn’t like to be spoken or treated in that way!

    Amy,
    https://creativenails.uk

    1. blacktulipbeauty says:

      Thank you so much for reading 🙂 they can and it is quite heartbreaking. Yes that’s exactly how people should think! It makes me think they’d be a whole lot less tolerant of the illness!
      X

  11. Kaiesha Stewart says:

    I absolutely hate the ignorance of some people. I’ve been in the passenger seat with disabled drivers and a lot of people – mostly the older generation, unfortunately – shout often because the disability isn’t so easily recognisable. It infuriates me, so I can’t begin to think how it is for you. You are most definitely badass though to suffer and still be able to get on with things!

    http://www.kaieshastewart.com

    1. blacktulipbeauty says:

      It makes me really angry and quite honestly pretty hurt to think that people could be so dismissive. Like I said, I’d never expect people to fully understand but to not even try to if you’re a person who’s regularly around me is just quite horrible! Thank you very much 🙂 I really appreciate your comment! X

  12. Sophie says:

    I hate stuff like this. People are so dumb sometimes. Not all illnesses can be seen. You never know what someone’s physical conditions are doing to them mentally either. Just because you’re physically capable of going somewhere or doing something doesn’t necessarily mean you’re up for it either. Keeping being strong. People will catch up eventually x

    Sophie
    http://www.glowsteady.co.uk

    1. blacktulipbeauty says:

      A lot of people just don’t seem to get it at all and it can be really crap to deal with their judgement when you’re already going through so much. Totally agree with your whole comment, thank you 🙂 X

  13. I’m glad more people are opening up and rasising awareness for UC and IBD. This was so relatable and I agree completely!! Hope you’re OK lovely and if you ever need to chat, I’m here.

    Becca,
    http://www.becxblogs.co.uk

    1. blacktulipbeauty says:

      Thank you Becca, I really appreciate it 🙂 It is definitely something I want to do more of! X

  14. Ashton says:

    I hate when people decide that you dont have anything wrong with you because they can not see it. it is something that really makes me angry

    1. blacktulipbeauty says:

      Yeah it really is the worst 🙁 I wish people could be generally more understanding

  15. Rebecca Muir says:

    I feel for you so much! My OH ended up hospitalised in November 2016 with severe pancreatitis and was then subsequently diagnosed with Crohns in the following weeks. It’s totally changed him and our lifestyle. He’s so tired all the time and its heartbreaking how shit a mood “simple” things that those of us who don’t suffer take for granted like getting to order our favourite curry or eating a pizza sometimes (neither of which he can do now because he can’t handle the ingredients). Physically he looks fine now, but its taken him until December just gone past to be able to get back to the gym now we have his diet under control – having been body conscious for so long, not being able to eat enough or workout was probably hardest for him! If he wasn’t able to work from home there’s no way he’d still be employed. I looked in to it a lot and have put our household on a Low FODMAP diet which has helped his pain a lot (and all the other nasty bits that come along with bowel disorders!)

    I hope there’s more awareness raised about Crohns, Colitis and others – definitely something I’ll be focussing on raising money for this year!

    I hope more good days come your way – stay strong! x

    1. blacktulipbeauty says:

      Oh I really feel for him 🙁 I’m sorry you’ve both had to experience it, I imagine it can be really hard to watch the person you love put up with such a horrible disease. As much as I would do anything not to have it, I wouldn’t wish it on my worst enemy and would much rather put up with it than let someone I love go through it.
      I currently can’t work either and have been off sick for 7 months and counting! I have trigger foods/meals too that I can’t really eat but generally food doesn’t really seem to help me unfortunately 🙁 I think surgery is going to end up being the only option for me!
      Thank you so much for your comment, I really wish you both well and hope things get better ASAP!
      Xx

  16. Meg says:

    A very powerful blog post Alice. Thank you for sharing, I’m sure it took a lot of courage and hopefully it’ll help a lot of people to understand your illness and ‘invisible’ illnesses in general.

    Sending lots of love! xxx

    1. blacktulipbeauty says:

      Thanks Meg 🙂 I hope so! I just wanted to make people think a bit more before saying/doing certain things x

  17. Natasha says:

    I’ve been at the brunt of someone’s ignorance before. I am anemic and even in the summer I’ll still wrap up from being a bit cold. I got called a weirdo because I was wrapped up and I had an illness

    Tasha x

    1. blacktulipbeauty says:

      It’s not nice when people don’t understand, the least they can do is try! X

  18. Jasmine says:

    I love that you’re using your platform to speak about topics like this. It’s important to raise awareness and develop understanding of different illnesses.
    You’re very brave and couragous for sharing this little insight into your life with us and if you ever need to talk, I’m always around <3

    1. blacktulipbeauty says:

      Thank you so much for your kind words 🙂 It would be nice to make a difference, even if it’s only a very small one! I just want people to be more conscious about their thoughts and opinions around it. Ill people do not choose to be ill, they got lumped with bad luck and they need to understand that x

  19. Julia says:

    This is an important post and many people should read it and learn. People don’t deliberately choose to have an illness/disability yet are being judged for it by ignorant members of the society. You’re such a strong person, I cannot even imagine the strength you need to get through it all. Keep going, you’re an inspiration to many people.

    Julia xx
    theglassofclass.com

    1. blacktulipbeauty says:

      Thank you 🙂 I know, it can be so crap when people judge you for something you can’t control no matter what. I really appreciate your kind words, thank you 🙂 X

  20. Leslie says:

    This is such an inspiring post. I think it’s so important for people who don’t have an illness to get to know what people go through. Thanks for writing an eye opening post

    1. blacktulipbeauty says:

      Thank you 🙂 and I agree! I think people can be really ignorant without realising it and it’s really important to be conscious of your behaviour x

  21. Anu says:

    Although I don’t have the same illness as you, I know exactly how you feel! I have a rare autoimmune disease which took ages to diagnose and although I have medication, my life is nowhere near normal which sucks especially when you’re young, it feels like you have to mature a lot faster than others your age. Ignorant people are the worst, I know that it’s difficult to understand if someone doesn’t look ill – I don’t think anyone other than the person who has the illness really can – but it would be really nice if people could try instead of assuming that since you LOOK fine, there’s absolutely nothing wrong with you… One of my relatives, who has the same illness as you, has been able to live a pretty normal life by having a really strict diet – no wheat, no milk… Usually, her meals consist of vegetables, pasta/rice and meat. It might not sound that appealing but ever since she has eaten like that her life is pretty much normal except when it comes to food. I hope 2018 is a better year for you and you find something that helps you even a little bit! Xx

    Anu | Based On blog

    1. blacktulipbeauty says:

      Yeah it really is the worst, I feel like because of certain happenings in my early teens I had to mature a lot earlier anyway and then being diagnosed with this has just made me feel so responsible and carry a lot so young and I feel like I’ve missed out on a lot of things and reckless memories I should have 🙁 yeah I totally get that it can be difficult to understand but all I wanted from this post was for people to think more about their subconscious thoughts and try to change the way they assume things! Yeah unfortunately I have tried a lot with food and been resistant to medication so far so mine has been a case which they haven’t managed to get under control like a lot of other people 🙁 thank you! I hope you are well too! Xx

  22. Aska says:

    I agree with everything you said. I’m a wheelchair user and I hate it when people compare my situation to my friend who is struggling with mental illness. Basically they say that she should suck it up because I “have it worse”. Sick people don’t do this my-problems-are-worse-than-yours contest with other sick people. Everyone’s pain is valid and deserves to be supported and respected.

    1. blacktulipbeauty says:

      I completely agree, everyones suffering should be taken into account no matter how big or small it may seem. I think if you truly know hardship then you would have the right attitude towards it, the last thing I’d ever want is pity!

  23. falidude says:

    Beautiful post. Not because of the content but because there is something important to learn from this post. Some illnesses are invisible and it’s important to highlight any misconceptions and you have done that really well!

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