There Comes A Time; Invisible Illness

There comes a time when you have an invisible illness that you are sick to the back teeth of being told you don’t look ill. It’s even worse when your kids have invisible illnesses and you are told they don’t look ill. They have been seen outside playing so can’t be ill.  There are more Children with an invisible illness than you thinks

Problem is with an invisible illness you learn to get on with things and when you can’t get on with things you aren’t normally out and about. But this doesn’t stop the comments.

The Girl in a wheelchair. invisible illness

Earlier this month I was told my daughter doesn’t look ill and is walking around ok. But what this person didn’t see was the hour earlier when she was in huge amounts of pain and right then she’s drugged up to her eye balls on codeine. I don’t want to drug my daughter up, no parent wouyld but needs must if she is to have anytime pain free and to have the luxury of a ‘normal’ life. To be able to do things ‘normal’ 12 year olds do.

People just don’t think that at your worst when you really do look ill that you are sat at home and unable to go out to show the world how ill you look.   Because people don’t see this then you can’t be ill.
Where children are concerned this ignorance and it is sheer ignorance is unacceptable.  It is so upsetting to watch the tears well up in your child’s eyes when somebody says there is nothing wrong with them.

Then there was last week. Another person said she was fine because she was smiling. This came from a person who knows about her illnesses and who gives her adult doses of codeine at times of need when I’m not there to give it to her.

Child with Invisible Illness

The Girl usually walks unaided and 99% of the time with a slight limp. People who see her every day don’t notice it because she limps so often. It’s strangers who notice it more as those around her have become accustomed to it. But last week she was on crutches. Clearly she was not ‘fine’, she wouldn’t be on crutches if everything was fine. This person can’t see what they have said is wrong. It doesn’t matter to them that my daughter was crushed by that off the cuff remark. It doesn’t matter to them that my heart broke again because my child was upset.

I take copious amounts of pain killers too. To do normal things with an invisible illness like get out of bed and get dressed in a morning. To do normal things like get my children ready for school and go out to work to provide for them.

Family activities are getting fewer and fewer. Just look how many times of late I’ve linked up with Country Kids. We used to do plenty of things but lately living with an invisible illness has meant we’ve done nothing. None of us are well enough to go for a simple walk on the beach even of late. We did go for a short walk on the beach last Thursday but I then spent 2 days trying to build my spoons back up.
Come Monday when I’d built those spoons back up you could see people looking and thinking nothing is wrong. Even those who know there are issues think nothing is wrong.

Invisible illness

But those people never see what happens behind closed doors.  Perhaps it’s time society thought a little more before they spoke.

18 Comments

  1. 29 July, 2015 / 12:30 pm

    Thank you for writing this. Im sorry that you experience ignorance at its worst, actually, I’m sorry that you experience people at their worst.
    I have a favourite quote,
    “There is a story behind every person, there is a reason they are the way they are. Think about that before you judge someone.”
    If people lost the ability to judge there would be no place for the ignorance. And a lot more room for gratitude!
    You sound like an absolutely incredible mummy who is stronger than most. Just keep taking care of your little family and continue to write informative and wise posts like this.
    xx

  2. 29 July, 2015 / 12:44 pm

    Yes, we should all try to remember a little more that we aren’t always seeing everything a person has to cope with, that we don’t know what something we have never experienced feels like, and that just because something is not visible does not mean it is not there. I think you make a very good point that is easy to forget: that in public we tend to only be seeing the absolute best moments for those with chronic illnesses – the times they can manage to be out and about. So we should not be thinking ‘that doesn’t look so bad’, we should be remembering that is the best it ever gets. #bestandworst

  3. 30 July, 2015 / 4:15 pm

    What a great post and quite difficult to write I imagine. In my line of work as a Nurse it’s surprising how many people I meet with an invisible illness as you describe it and have to take so many medications to be even able to get out of bed on a morning. Thanks for sharing such a personal post with the #bestandworst XX

  4. 31 July, 2015 / 2:04 pm

    I can feel you pain. When my son was sick before people kept on telling me that he is okay. He is not. Eventually someone listened to me and we found out whats bothering him. Its a good thing that I persevered about saying to the people who are telling me it okat that something is wrong otherwise we will not find out what really is wrong.

    Sending you and your daughter hugs.

    #pocolo

  5. 31 July, 2015 / 10:04 pm

    This is SO SO true. Ross had ulcerative colitis in his early 20s and is registered disabled because he has no large intestine. the amount of people who are so rude because he doesn’t look ill is awful. We got terrible abuse for getting into a disabled area once. As you correctly said, just because you don’t look ill, doesn’t mean you aren’t. That quote is great. I wish you all well. Take care and thank you for linking to #PoColo x

  6. 31 July, 2015 / 11:23 pm

    How horrible and frustrating to experience those words – directed towards someone you love the most in the world. But please don’t take it to heart. Some people are ignorant. They don’t get it. Feel sorry for them and their lack of knowledge and block out the negativity. Sounds like you and your daughter are doing an amazing job of getting on in the toughest times. Have so much respect #pocolo

  7. 1 August, 2015 / 9:50 am

    Do you know what? I really think that people are trying to help. They’re trying to make it feel like everything’s ok. What they don’t realise, is that their reasons for wanting everything to feel ok are selfish, so that they, themselves can walk on and not worry about you – or about the chances of it happening to them. I think until you’ve walked in someone’s shoes, you have no idea how to handle their problems, and so you minimise them to make it all feel more comfortable. It’s wrong, and it’s grossly upsetting, but I think it’s the norm, and it’s not done with ill-intention. It’s simply confusion and lack of ability to know how to support.

    I can say this, because I’ve walked on both sides of the fence. I’ve been that person who has dismissed an invisible illness as ‘ok’ and then felt mortified when the exact same illness walked into our lives, and I realised the pain I might have caused. It has made me much more tolerant and empathetic of anyone I come across who says their life isn’t easy, because I know now that I can’t possibly identify with what they’re going through. But I think until you’ve experienced similar, it’s so so hard to get it right.

    That’s not to say that people shouldn’t keep trying though, which is why it’s important to write and share posts like this, to help people try to be more supportive.

  8. 1 August, 2015 / 11:00 am

    Its so frustrating to read this. Your daughter is really going through it, but because she smiles or giggles, on a good day, she’s ok!? Ignorance is a disease itself, spread by idiots xxxx

  9. 1 August, 2015 / 11:23 am

    What a great post and an important message that really needs to get out there to raise awareness. X

  10. 1 August, 2015 / 9:32 pm

    How frustrating for you and your child. I have a mysterious illness/s and no day is ever the same. I have ME and other suspected things. I am on so much medication that now I am getting serious side effects from those. I hope you get an answer soon, both you and your child deserve this.

  11. 5 August, 2015 / 9:52 pm

    Great post. Just because you can’t see something doesn’t mean it’s not there. #pocolo

  12. 7 August, 2015 / 1:53 pm

    Living with invisible illness all around me has taught me to be so less judgmental, but as Helen says, some people really think they are being kind and helpful when they say the wrong things. I had so many people say how happy they were that my daughter was better after her operation. I smiled gracefully because I was glad she’d had the op. and she did look much better, but her disability hasn’t gone away and never will. I’m glad your daughter is still able to smile and have fun, my girl does too 🙂

  13. 8 August, 2015 / 5:46 pm

    This is tough. I know from experience. Sometimes I think people are just trying to diminish their own need to think about the issue. If they really had to stop and consider what life is really like then it would not be pleasant. It is hard being judged but their judgement is not about you or your daughter , it is a reflection on the people who are doing the judging. Hang in there. #pocolo

  14. 9 August, 2015 / 5:26 pm

    I regularly conclude that people are idiots. They can just say / ask the most stupid things. I have been one of those people too, through ignorance hasn’t understood. Thanks for the reminder to watch what we say and look into things so we can try to understand #PoCoLo

  15. 28 August, 2015 / 6:29 pm

    We all stay at home when we are too sick to go out. That’s common sense and you’d think people would realise that. It’s one thing to be getting out for a few hours but paying for it later, and quite another to be well. x

  16. 2 September, 2015 / 5:34 pm

    As an adult with an invisible illness it’s hard enough, smiling through pain because well, what else can you do? But to be a child, with school and friends and what should be a care free existence is even harder. Even the people I love, who are closest to me don’t understand my illness, telling me to pull myself together. But the truth is until people have experienced it they don’t want to give any sympathy, don’t know how too. You can only seek to educate and help people understand. Big love to you and your daughter xx

  17. 22 September, 2015 / 4:21 pm

    Having an invisible illness myself I feel for your daughter. It is so difficult to explain the illness when you look fine. Sending her hugs and the strength to carry on.

  18. 1 April, 2016 / 10:07 pm

    I’m so so sorry that you have to deal with such a terrible ignorance from people. Life can be cruel and people crueler – thank you for being brave and sharing xx

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