How To Cope With Invisible Illness Frustration

If you’ve never heard of the term ‘invisible illness‘ before, the explanation is in the name. A illness that you can’t see with the naked eye/can’t always see outside the body. It’s basically describing a bunch of illnesses that you may not have heard much of such as:

  • ADHD
  • Inflammatory Bowel Disease (IBD)
  • Fibromyalgia
  • Depression
  • Multiple Sclerosis
  • Chronic Fatigue Syndrome

To learn more about some of the invisible illnesses out there, check out these links. They’ll give you better information than I can! Haha!

There are so many invisible illnesses out there that we’d be here all day if I mentioned all of them! As you’ve probably guessed, not every disability is visible. People with these types of illnesses often seem okay on the outside and that tends to make their life even more challenging.

invisible illnessPhoto by Sydney Sims on Unsplash

What could possibly frustrate someone like this? Oh, there are more reasons than there should be and it sucks that even one of these happens. As we don’t always have aids to help us, abled people tend to make it their job to judge us.

  • Being harassed for using a disabled parking space.
  • Being harassed for sitting in a disabled bus seat.
  • Struggling to get friends to understand how difficult it can be to go out.

Not only do we have to suffer the symptoms from our illnesses but we also have to defend outselves (even from medical professionals). I’ve had to see so many different people and it can be really disheartening when you have to prove to others that you’re actually suffering and it’s not all in your head.

As recent as yesterday there has been a picture making its way around Twitter chatting about living with pain. The techniques they shared to ease pain is to dust off your bike and go for a ride, see if you can lessen your pain medication and go for walks. My thought? Have these people even suffered with a chronic illness before?! I would give anything to be able to do any of these without pain then or later on. I’m lucky if I can walk 3000 steps in a day sometimes and that’s why I’m trying to push myself a little.

I asked some friends who suffer from an invisible illness if they could chat a little about their frustrations and how they deal with them.

Chloe Metzger (Mental Health & Fibromyalgia)

When in a non-pandemic using disabled toilets or spaces on public transport because I’m young and look healthy. I have my stick with me just to signal to people I need the seat. Even then sometimes it’s rare for someone to give up their seat for me.

It’s hard…I normally take a book or my phone out and just look at that instead.

Kara Cole (Severe Anxiety, Emotional Instability, Hypermobility spectrum disorder (HSD) and Fibromyalgia)

The hardest thing for me is the inconsistencies. What you do one day is not the same as what you can do the next. It’s frustrating getting others to understand and acknowledge that, but it’s more frustrating to deal with that yourself. A string of bad days is heartbreaking.

The support from believers is invaluable. Friends or family who believe you and fight for you are amazing. They can fight for you even when you can’t.

The problem is that because women are more prone to these types of conditions, doctors put the symptoms we have to us being either emotional and that it’s just all connected to mental health. I literally went to a pain management class that told me I wasn’t really feeling pain. It was just the nerves in my pain pretending to make the feeling of pain.

Coping Ideas

One. Record everything in a diary and say where exactly your pain is. Say how long the pain lasts and what situations tend to flare up your pain.

Two. When you start seeing doctors, see if you can get a copy of your medical records and test results. It’s something you can take to other professionals in the future.

Three. If you’re a friend or family member of someone with an invisible illness, please try not to judge a book by its cover. If someone has a chronic condition like IBD or fibromyaligia, they may look fine but they’re more likely going to be exhausted, in a lot of pain and dealing with other possible things

Four. Remember that you are not alone. For every person that judges you, there will be someone out there that understands what you’re doing through. Chat with them when you need to and try to educate those around you. The more people understand invisible illnesses, the easier the world will be for us.

Five. Be patient. If someone with an illness chats with you about their condition, be patient with them and listen. They’ve had to deal with a lot of stigma up until this point and it has probably taken a great deal of courage to talk to you.

It’s very difficult to struggle in silence. I don’t like to be a bother to people and tend to give up the disabled seat when I see someone with a stick or wheelchair. It’s getting to a point where I will be needing an aid to help me with my walking and I’m currently on the list for a worker to help with my communication issues due to lockdown and my autism. Even now I don’t mind waiting. There is always someone worse off than me and I’d prefer if they got the help first.

Remember: don’t automatically assume that someone is okay or ‘normal’ just because they look like it. It’s usually on those days when they put on a mask just to get through that moment.

Last month there was an awesome campaign called ‘Making The Invisible Visible‘ where a group of sufferers took pictures of themselves with labels of their illness on their body. It was super inspiring and it’s raised over £800 to date!

What are your frustrations on having an invisible illness and how do you cope?

invisible illness

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  • Reply
    23rd January 2021 at 12:54 am

    I had extremely bad chronic pain from an undiagnosed issue in my teens and it was awful. My school was only a 5 minute walk from my house and felt like a marathon. I had to sit down after climbing stairs at home, I was given a lift pass and wasn’t allowed to use stairs at school. It was AWFUL. But I was 14/15 and looked so healthy very few people understood how much I struggled to do basic things. I was too focused on getting myself around back then to notice the judgment thankfully, I get angrier about it looking back now 😂

    • Reply
      28th January 2021 at 6:04 pm

      Ooof! That sounds dreadful! It’s bad enough having chronic pain in adulthood but it’s worse as a teenager. I had issues with my knees as a teen but nothing to the extent you had. The worst I had was having to see GPS and physical therapist to work on my walking xD

  • Reply
    26th January 2021 at 6:18 pm

    Oh this post is just wonderful and it just spoke to me Daisy! I hate it when I get harassed for parking in a disabled space, some people are so ignorant and judgemental, they don’t think about invisible disabilities and the impact it has on people! x

    Lucy |

    • Reply
      28th January 2021 at 6:00 pm

      Awww Lucy!! This comment means so much coming from you. You’re a bit of inspiration of me when it comes to posts like this. It’s awful how people believe it’s their ‘duty’ to confront people. One day their brain cells will work.

  • Reply
    26th January 2021 at 10:58 pm

    I suffer from depression and I struggle a lot when socializing because often people doesn’t understand that it is a real illness and judge the book by its cover when my symptoms kick in. Thank you for sharing this post! 🙂

    • Reply
      28th January 2021 at 5:57 pm

      Definitely!! It sucks that some people only think depression is a bad day and nothing more. Hopefully we can continue to work on the mental health stigma!

  • Reply
    Nic | Nic's Adventures & Bakes
    27th January 2021 at 10:43 am

    Thank you for sharing this post, as a diabetic its always hard for people to understand what goes on my head each day, it also impacts my mental health as well 🙂

    • Reply
      28th January 2021 at 5:53 pm

      I totally get this! Diabetes runs a lot in my family so I can understand why people don’t always get what is going on. You’re doing a great job!

  • Reply
    Jenny in Neverland
    29th January 2021 at 11:16 am

    I wholeheartedly agree with Kara about the inconsistencies thing. When my anxiety was bad, I’d be questioned about it / be told I was a bad friend, for having a “good day” when the next day I couldn’t leave my house. Really great post Daisy, hope this helps more people understand xxx

  • Reply
    30th January 2021 at 3:30 pm

    Really powerful post. Points four and five are so important for sure and everyone should always be able to feel they can open up to at least someone about how they are really feeling. We so often play the comparison game when people seem to be better off, but it’s hard not to do it and accept that you’re struggling as well, people don’t necessarily have it worse, they just have it different.

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