Invisible Illness

13 Things you only have to deal with if you have an invisible illness

There are many ways a person can be sick without it showing on the outside. Crohn’s, mental health issues like depression and anxiety and hyper mobility are just a few of the invisible illnesses that many people deal with day to day. However, just because these illnesses are not immediately visible to others, does not mean that they should be forgotten and overlooked.

The mobility aid experts over at Ability Superstore wanted to bring a bit more awareness to this topic, and take a look at some of the things that those with ‘invisible’ illnesses have to deal with every day.

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 1 “You don’t look sick”

Not all illness is visible from the outside, many illnesses are completely internal, such as Crohn’s and mental illness. Just because someone doesn’t ‘look sick’, doesn’t mean they are feeling 100%.

 2. “Everybody gets exhausted.”

While the current pace of modern life is tiring there is a distinct difference between being tired and being sick. Sickness can take a lot out of you and even mental illnesses can have a dramatic effect on energy levels.

 3. “You’ll feel better tomorrow.”

A lack of understanding drives this statement. ‘Invisible’ illnesses will not be made better by  “a good night’s sleep”. Some ‘invisible’ illnesses are long term and a lot of people will have to learn how to live with them for their entire lives.

 4. “I wish I had time to take a nap.” 

Debilitating fatigue is not falling asleep on the sofa after Sunday dinner. Tiredness is one of the hardest invisible symptoms to explain, often being wrongly associated with laziness.

 5. “Push through it and you’ll be ok.”

That is not at all how this works. Especially when working through common daily tasks feels like wading through treacle. Consider asking how you can help rather than making off-the-cuff statements.

 6. “Have you tried doing this…”

When it comes to any illness, there are those friends and family members that instantly become a doctor when the subject arises. The likelihood is that we’ve already had all the information we need from our GP’s and we don’t need unqualified advice.

 7. “You need to get out more” 

Making and keeping plans whilst ill isn’t easy. Friendships can be tough with an invisible illness, but they can take on a deeper quality that doesn’t rely on “getting out more”. Socialising in itself can seem a lot more tiring when you feel sick and just the thought of ‘getting out more’ can make you feel worse.

 8. “You can’t use the disabled toilet, that’s for people with disabilities”

Often you can feel self-conscious using facilities reserved for disabled people, despite the need for them. People often don’t understand that not every disability manifests itself in the same way.

 9. You constantly have to think of an excuse 

We shouldn’t have to think of an excuse whenever we are too tired or feeling unwell. We shouldn’t have to feel the need to explain why we don’t want to meet up or why we’ve changed our minds last minute about going for that drink.

 10. “There’s people that have it a lot worse” 

It’s not a competition as to who is more sick than whom. Every illness, no matter how severe or how visible, should be treated with the same sensitivity.

 11. “Your life is great…what do you have to be sad about?” 

Living with an invisible illness isn’t easy but comments like this make it harder. Having to justify yourself constantly to overcome ignorance only adds to any stress. Depression is a sickness just like any other illness and those that suffer with it will know that there doesn’t have to be a specific reason or event that has made us feel this way.

 12. It doesn’t matter how old you are, you can still have an invisible illness

Young people are often unaware of hidden illness, which makes explaining and understanding it even more difficult. We assume that young people are generally healthy and carefree, however there are more and more young people being diagnosed with mental health issues than ever before.

13. You can end up making yourself more sick

All these daily battles wear you down. Often we push ourselves too hard to comply with preconceived expectations and this in turn can make recovery longer.

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As you may know I have Crohns Disease so this is obviously something personal to me. I talk openly about my condition and always have done to people around me. Some can’t express themselves and the fact someone can be hurting without it being visible can be challenging for the person and those trying to accept it. My condition is currently under control but obviously it never goes away so there will be good and bad days. Supermarkets are beginning to introduce disabled facilities that can be used by anyone with any form of illness and mental illness is being talked about regularly in the media, barriers are slowly being broken down. However, there is still a long way to go in the fight against ‘invisible’ illness taboo.

xxx

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16 comments

  1. Thankyou so much for this post. It sums up everything I have been feeling recently. I had surgery 3 weeks ago and actually felt almost relieved that for a few weeks I havent had to explain why im tired, sick etc because there has been something to show for it. Then I feel guilty that I have felt like that because my invisible illnesses are just as valid as the surgical scars I have right now.

    1. Oh poor thing, hope you feel better soon. I totally know what you mean though!! That wound shouldn’t be the reason sympathize with you but sadly it just happens. You know what you are going through and no one else so you just have to learn to accept it and also be a bit selfish sometimes. xxx

  2. Paige!! I needed this… Thank you. I’m nearly 18 and I’ve gotten all of these. I’ve suffered from chronic illnesses for 10 years and learned to appear and function as ‘normal’. Consequently, people have responded with skepticism regarding my sickness. Now that I’m at risk for esophageal cancer as a result of my chronic illness and I’m starting to look as sick outwardly as I am inwardly, the comments are stopping. Where was the compassion before? And why should I get it 10 years late? I’ll never forget my camp counselors accusing 8-year-old me of being bulimic after vomiting uncontrollably. I’m sure you and many others here have similar stories. Again, thank you for posting this!

    1. Oh honey glad this helped you. Oh goodness yeah, the amount of stories I have had and comments made to me are endless sadly. I have learnt to deal with it and be a bit selfish with my illness when I need to be! xxx

    2. I agree with you. When I was in 6th grade I couldn’t stop throwing up at our school’s swim party. I got called everything you imingine and the school even had a sit down with me and my mom because they were concerned. Like you I still get the you don’t look sick until I am wearing a heart montor and than people are still even looking at you for pulling into a hadicapped spot.

      1. Yeah exactly, I just wish it was as simple as maybe asking what we are doing instead of glaring and assuming we are being cheeky and taking disabled spaces. a little less judgement would go a long way!

  3. Thank you for your post! I was diagnosed with systemic Lupus at age 12. Became legally disabled at 23 after many many complications with my lupus. At 25 I was diagnosed with Fibromyalgia (another invisible illness). A year and a half ago I decided to move from Maryland to Jacksonville, FL. (Better weather for my RA, I live a few minutes from the Mayo Clinic as well) Since I’ve moved down here, I feel like I’m going through all these steps again. Having to explain why I don’t work, what my illness’ do to me, having to cancel plans in new friends, and I’m also dating new again. We’ve been together 7 months now and he still thinks I’m not as sick as I really am, he won’t sit and talk with me about my diseases, won’t read or listen to any videos. He makes me very upset when he thinks I’m picking and choosing which days I feel ok and not. He is a huge stresser in my life, and stress is the worst for what I have. I’m back to feeling like I have to apologize for everything. I thought I was done doing that the rest of my life. This turned into a vent. But thank you so much for your blog. It reminded me I need to be a stronger advocate of my life and not take S#*+!

    1. Thats okay babe. Maybe you need to send your new partner this article so he can read it and have time to take it in. Some people just don’t like to talk about things as it makes it more ‘real’ for them, and its upsetting for them to think about it when it’s someone they care about. New friends will gradually learn and adapt and you may learn the hard way when people come and go like I have sadly. I feel sad that he is a stress in your life but hopefully he can learn to understand as its not like you have an off switch!! Vent here on my blog any time and my email address is in my contact me if you ever fancy a chat.

      xxxx

  4. I cant walk for more than one minute before im tired . Or struggling to breathe. My shoulder is stuffed kills me the pain is so bad. My feet filled with arthritis. Im dammed if i do abd if i dont. People say come on i cant im just to tired.

    1. I feel this honey, its a regular occurrence people assuming you can push through it. Keep your head up and stay strong mentally as much as you can. Looking after yourself is so much more important than caring what others around you are thinking. xxx

  5. I am 54 and had prophylactic surgery to remove my colon and partial rectum this January due to Familial Adenomatous Polyposis (FAP). This is a rare disorder that causes multiple amounts of polyps in your GI system that causes cancer there and other areas. Thanks to not having polyps in the bottom half of my rectum, I was able to have my small intestine attached to it (hence no colostomy bag.)One of my main issues is having to use the bathroom approximately 10 times a day. Which ends up causing fatigue and me sleeping day and night at times (Dumping Syndrome.) I have a few people, in particular a family member, not understand why I haven’t recuperated from my surgery and bounced back by now. This disease has no cure and I have polyps with low grade dysplasia in my stomach which I eventually will have to have that section removed. It hurts my feelings when people act like I’m being lazy, “playing sick, and not recovering fast enough.

    1. Hi Lisa, you and your body have gone through a hell of a lot. You don’t need to make yourself mentally ill with worrying over these people that don’t ‘get it’. I totally relate and really hope that in time more people will understand it isn’t laziness when we need our rest. All my love. xxx

  6. Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
    Karma 8520

    Keep Posting:)

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