What its like living with an invisible illness

On Sunday Oliva published a post titled ‘What is life like living with an invisible illness?’ on her blog Dungarees&Doughnuts.
In her post she wrote about her story with her metal illness’ and I definitely suggest you take a read.

Mental illness, while not as much as it used to, still has a stigma and talking about it is one of the best ways that we can break that. However metal illness is not the only illness out there that is invisible and carries a huge stigma, though unlike metal illness’ not many people are talking about it.

It is a hard topic for me to talk about. My least favourite one if I am perfectly honest. Especially around this time of year. I tend to jump around the question when asked or make jokes because of how uncomfortable it makes me.
Ive mentioned it a couple of times with no explanation in a few blog posts but blink and you’ll miss it.

Might as well pull the plaster off in one go.

I have a chronic illness that goes by the name of Myalgic Encephalomyelitis.
(try saying that five times)
I was diagnosed during the Easter Holiday of 2010, aged 13 and a half, after a spot of Glandular Fever the previous December. You would be surprised how many people get their chronically ill card after Glandular Fever.

Following diagnosis I was still incredibly unwell and I had just gotten out of hospital, my school told me that I had missed too much school and I couldn’t go on the skiing trip. Nothing was going right, the whole world* was against me and so forth. Looking back, I wouldn’t have been able to manage it anyway, making it the right decision on my schools behalf, but at the time it really hurt.
I was really looking forward to that trip…..

/////and thats the story of how I never finished year 8 😉 tune in next time for how I never finished-
Its really hard to not get off-topic. Sorry. Like I said, this is a sensitive topic for me. I tend to derail..

Living with a physical illness that is invisible is hard. People just don’t believe you
If I had a penny for every time I was told……

“But you don’t look sick!”

……I’d be a lot richer than I currently am.

Im not sure if people mean it as a compliment or what. It doesn’t seem like one. No really, it makes me feel bad for putting on makeup or wearing clothes other than pyjamas, like I’m deceiving people or something.

Having an illness that is exhausting and painful yet no-one can see is just a whole load of messed up stuff. You have others doubting you. Saying your exaggerating. You could do that thing last week- why cant you this week? Constantly feeling like you’re letting other people down. Never quite being able to do as good as you feel you should be.
I cant name one good thing about having one.
Thats probably one of the reasons a common side-effect is depression. lol.

School.
Our school system isn’t one that can deal well with an illness like this. I’ve read many blogs written by people with M.E./CFS and they got it late-teen/early-twenties – and oh my god do I feel jealous.
When I eventually had to drop out of mainstream school (Year 9- Easter Holiday) I was enrolled in “hospital school”. They have three categories; inpatient schooling, outpatient schooling and home schooling. They took one look at the incredibly unwell, barely able to do anything, practically bed-bound fourteen and a half year old and decided that outpatient schooling would be best! Ha! Who cares if the reason she had to drop out of mainstream school was because she physically couldn’t get in! Physically going into a smaller school further away would be so much easier!
wait it gets better!
When she does her best in attending and eventually does too much ending up even more unwell- tell her she’s not trying hard enough!!! That will work!! Definitely!
(I love spending the October holiday in Hospital <3).

Thats all I can say on our terrible school system. The staff was horrible. They were supposed to be specially trained to deal with kids with medical problems but I swear- the friends I made there that I’m still in contact with agree with me, they were terrible**.
They only agreed to let me have homeschooling the last quarter of Year 11 as my Mum spent ages trying to convince the Principle that in order to take my GCSEs I needed some form of education.
I ended up with a D in Math and a C in Science.

Having a school with a population of 30-40 and a more ‘relaxed’ approach to lessons may work for people with Anxiety, but I can promise you- it doesn’t work with M.E..

Friends.
Now, I don’t have many friends from ‘before’ as the majority kinda left after I told them/got pushed away cuz I’m a lovely human who knows how to treat other people right.
Those that I made ‘after’ either still do not know the extent of my illness, do not know at all or were only told after a certain amount of years of knowing me.
I personally don’t make it a thing to tell people. I really hate being known as the person who’s always unwell…even tho its kinda true.

I feel like you have a chronic physical invisible illness you try spend half your life trying to get on with it/ proving that your still a person and the other half trying to prove you’re actually unwell, that your pain- though invisible- is still real and that the tiredness you feel isn’t the same tiredness as that friend who just finished work/ ran a marathon. But also being careful not to diminish that friends tiredness.- theres a fine line between saying “its not the same” and “yours doesn’t count because mine is worse”.
Its really hard finding that balance. Five years down the line and I still get a little OTT and get annoyed with someone for complaining about a headache or a cold.

The Public.
People. Strangers you see in the street. As an invisible illness is in fact- invisible and so people who don’t know you wont know. They will do as strangers do best and judge you.
“Why is a perfectly healthy girl using a disabled badge? Don’t you know its illegal to use your grandmas?”
“I just saw you walk into that wheel-chair, you obviously don’t need it. People like you are whats wrong with…etc
“Do you really need to take that much medication?”

The first one doesn’t bother me that much anymore. My blue badge is registered to me and that means the government or whoever deals with it has decided that I am entitled to use it. I don’t bother explaining to my friends when I pull into a disabled spot because- I’m not doing anything wrong.
On the second one- let me tell you. If you see me in a wheel-chair its because I need to be in one. I don’t sit in it for fun…and tbh I’m usually quite stupid and will push my body as far as it can go before willingly using a wheelchair. Usually my mum steps in and is like “Hannah, is walking that distance so important to you that you’d willingly make yourself sicker?”.

#melastsummerlookingcuteinwheels #onlypicofmeinwheels #clothesshoppingiswhenimhappiest

Day to day life.

Day to day life is not very entertaining. Ive had a bad couple of months this year and because of that I’m currently in quite a strict routine with medication and taking things easy.. I’m very irresponsible when left to my own devices and would prefer to do whatever I want and just pay the price later rather than pacing myself out.

Though I should let you know that a couple weeks ago I had just done something with a friend when another friend invited me out- and I said no. I was responsible for once in my life.

Maybe this five year mark is changing me. 

It may seems like I don’t do much but some days even just getting out of bed is a hard task. I have to keep days reserved just for showers and others for doctors appointments. Also blog photos. A/W is the worst time of year for me as I seem to catch every cold going- so every A/W I get the flu jab and cut half my hair off so its easier for me to manage. It sucks but its something that has to be done.

I spend some days in bed, somedays at my desktop, some days I even get dressed or do my makeup- you must think “ok? everyone does that?” but for me its quite the achievement. My dentist says I should brush my teeth for 4 minutes- most days, unless I’m feeling especially strong, I have to do that in one minute intervals. ikr. I feel 80 years old just discussing this.

Non-medical trips out of the house are quite rare at the moment which is why I enjoy taking tonnes of photos and videos while with friends. 

I want to be the kind of person who spontaneously plans things and goes away with friends while also in education with a job but at this very moment in time it’s not possible.

If you read last Septembers post on my college decision you might have noticed there weren’t many updates on that. Long story short- I wasn’t ready for all of it and ended up quite unwell by November. Yay, yet another year wasted.

Im not quite sure how to end this post. I feel like I’ve shared a lot yet at the same time held back a lot. There’s a lot I could say but I’m not sure I want to. Also the title of this post was already picked before I started writing so I wanted to stay on topic.

I’ve tried not to focus on too much of the negative stuff- but I’m worried that it may just be a useless post.

I’ve never written anything like this where I actually tried to explain things in a way that anyone other than me would understand. 

If you want more detailed posts on any specific topic to do with M.E. then I can try?..but I’m sure someone else out there has already written a better post.

Thankyou for reading,

H

ps. I don’t want it to seem as if I’m trying to take away anything from mental illness’ and Olivias post by taking the title and writing about a physical illness. Invisible illness’ of any kind should be talked about lots and lots as as a whole we are quick to judge people if we cannot see immediately what is wrong. I touched on the fact that people with M.E. (and other chronic illness’) often get depression as a side effect, that include me. However its a topic I’m not fully comfortable talking about. 

pps. There are tonnes of people out there that have this illness worse than I do (right now), and for that I count myself lucky every day.

ppps. I’m ending writing this and I have a question stuck in my mind-> if I had the chance would I go back and never become unwell?

Ive met 95% of my friends because of things that have happened since I became ill, and I really do like some aspects of my life. It would be a scary decision because theres no proof that my life would have gone exactly how I wanted even if it hadn’t happened. Even with all of that, and the fact that I love all of the friends I’ve come to know since Easter 2010…I find myself thinking that if I did have a chance to never get sick,, I’d do almost anything to take the chance and run with it. More so than miraculously getting better now (while I’d still love that to happen) .. I’d like these past five years back.

What about you?

uuuuuuugh so much text. srry. new haul up soon I promise ♡

*asterisks*
*except my doc. Tho I was apparently quite lucky when it came to my doctor as they were as helpful as they could be, and always took everything I said to be true. Even after I was discharged from Paediatrics Outpatients my GP continued to be amazingly helpful. Other people have not have as good of an experience as me.
**except for one. The English teacher was nice. Not incredibly useful, but not mean-spirited. My friend O also had a good experience with the film teachers.

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6 Comments

  1. April 14, 2015 / 6:57 pm

    A previous house mate said a similar thing along the lines of "but you dont look sick" to me once, and it was "but you don't take tablets so it cant be that bad". I hate that whole stigma around invisible illnesses, but this was a beautifully written post <3 It's so helpful to read the stories of others and know that sufferers arent alone

    Rebecca // rebeccamariee.blogspot.co.uk xx

  2. April 14, 2015 / 7:02 pm

    "but you don't look sick" is the most ridiculous thing i have ever heard in my entire life, just like the "but you don't look depressed". this stigma with chronic illnesses, it's absolutely no fun. but you are so eloquent and this post was so beautifully written that i cannot wait to see what your blog brings me in the future. i loved seeing your posts in the askablogger chat!

    brooke | brooke elise beauty

  3. April 17, 2015 / 7:28 pm

    Such a beautiful article. People can be truly ignorant, for sure. I was physically ill for a year (yes, I know it isn't five. That's a really long time!) and my mom would get after me for silly things like not helping around the house, or watching far too much TV. She didn't understand that the action of getting out of bed took most of my daily allotment of energy, and that there was none left to even push my own wheelchair.

    What are some more rewarding things that have come from this illness?

  4. April 23, 2015 / 9:27 pm

    I try and stay positive and be thankful for how lucky i am. There are always people worse off and all that! But, sometimes I want to scream, everything may look okay on the outside (ish) haha but it's not! you are so brave to share your story and you are very strong indeed. I think you should celebrate every task you complete! x

  5. August 8, 2015 / 3:52 pm

    This post is fantastic. That sounds weird, but you rarely hear people talk about M.E or similar illnesses, not in this much depth and how it actually affects the persons life.

    I was diagnosed with chronic fatigue in 2009 and then fibromyalgia in 2013. I am in my 20s and so thankfully never had to deal with it at school, dealing with anxiety and depression was enough for me at aged 14. I can imagine how difficult those years would have been for you to go through living with M.E. 🙁 the hospital school sounds awful, they really don't think that if a person is struggling to get out of bed because of an illness, and they're not able to go to school due to it, that they won't be able to trek to the outpatients to get their education. There is definitely someone who is in charge who has their brain screwed in wrong. It's not logical and it makes the patient worse. I'm angry for you for having to go through that 🙁

    All the snide comments you get from people as well as that 'you don't look sick' really wind me up. If they only knew how much pain and exhausted our bodies get, that actually being able to get out of bed is an achievement. That having a shower absolutely kills and you will need to lie down afterwards. So putting outside clothes on and make up is like winning the gold medal at the Olympics, and we damn well deserve an applause.
    It's one of them, you don't know until you know… and I wouldn't wish this life on anyone.

    I've spoken to a few people who were in their teens when they were diagnosed, it is horrible and I feel like I can't complain much as I'd lived a little before getting sick. To be just starting out and feeling, like you said,like you're 80. It's really not fair 🙁

    I hope you're having a good day today and haven't dealt with any judgemental idiots.

    Juyey. Xx

    Juyey.com

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