The Frustrations of Living With an Invisible Illness/Disability.

I don’t talk much in detail on this blog about my illnesses and the everyday challenges they bring.  When I first started the blog, my intentions were to talk a lot about my M.E. and fibro, but as it went on, I found myself blogging almost solely about makeup and beauty as that’s where my passions lie!  However I have realised it’s important to talk about the reality of my day to day life.  I need to use this platform to raise awareness of invisible chronic illnesses, so that more people understand.

My life has changed completely since first being diagnosed over two years ago.  However it is only really since December 2014 that I have been mostly bedbound.  M.E. is a fluctuating condition, meaning I have good days and bad days (or should I say bad days and not-as-bad days?  There are no real ‘good’ days!)  I sometimes make it out of the house, for my numerous doctors and hospital appointments and the very odd social occasion, however I would say I spend around 70% of my life bedbound, 10% housebound and only the remaining 20% able to leave the house.  When I do leave the house, it has often taken days of rest and preparation to manage it, and almost always involves several days of recovery in bed afterwards, with increased pain and fatigue.

It’s only really in the past 9 months that I have truly felt ‘disabled’.  M.E. is classed as a disability, but can have different levels of severity.  Some people have mild M.E.  They may even be able to work full-time and maintain a social life, but with much more rest than the average person.  On the opposite end of the range, some people are totally bedbound, use wheelchairs, are incontinent, and even have to be tube-fed.  Bearing this in mind, even though I have been very ill, I still count myself lucky to have a certain level of independence most of the time.

A few things have happened in the past few months to make me realise that I am much less ‘able’ than I used to be.  I can no longer walk even short distances, and have to rely on taxis to take me on short journeys… meaning I then have to endure the (probably ‘well-meaning’) comments from taxi drivers on the short distance I am travelling.  I am not in a wheelchair and as far as they can see, I look ‘healthy’ – they don’t understand why I don’t just walk.  Often, the implication is that I must be lazy.

I can no longer stand for more than a few minutes at a time.  When healthy, you don’t even realise how much time you spend just standing.  At bars, in queues, waiting for prescriptions.  I now have a great knowledge of where the nearest chair or bench is!  On the very odd occasion I manage to attend a social event, I have to find out where it is so I can arrange a taxi to drop me as close as possible.  I have to ask the person planning it whether we are staying in one place, as it is difficult for me to walk between bars etc.  I have to find out whether there will be seating available, as I cannot stand chatting for hours on end.  I have to find out whether there are stairs, whether they have a lift and where the nearest toilet is.  Of course there are often disabled toilets on ground floor level, but as I am not in a wheelchair or ‘visibly disabled’, I am made to feel very uncomfortable using these facilities.

The thing that prompted tonight’s post is what happened last night.  My husband was kind enough to buy me tickets to see Fall Out Boy for my 30th birthday back in May.  We both hoped I would be feeling a bit better by then (I never really anticipated feeling this bad for so long).  Last night came around and I was feeling dreadful, but really didn’t want to waste the expensive tickets and the rare chance to see an American band here in Leeds.  I pushed through and managed to get ready, with a lot of resting in between.

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(And this photo is why I love makeup so much – it disguises all sorts of pain and illness!)

My father in law kindly dropped us off in the car, saving any walking.  Thankfully, Leeds Arena have escalators going up to the third block we were in,  However once we got into the actual seating area, we realised we were the very back row, right at the top of the arena!  I tackled the stairs with some rest breaks, but felt really weak and bad once at the top.  We couldn’t see any free seats and realised someone must be in our seats, but you can’t see the seat numbers when people are sitting down, so I waited at the top whilst my husband went to get the steward.  The steward managed to clear our seats but said they were at the other side of the row and we should go all the way back down the stairs and back up again on the other side.  I explained to her that I wouldn’t be able to do that, and she kindly found us an easier way to squeeze around the back and find our seats.

Now I know to a normal person that doesn’t sound like much of an ordeal, but I was exhausted and shaking by this point.  Once in my seat, I had a drink and recovered a bit – I was looking forward to the show.  The music started up, the band came out onto the stage… and EVERY SINGLE PERSON in the seated area stood up!  I couldn’t see anything but people’s backs.  I thought they might just be standing at the beginning, but everyone continued to stand for the ENTIRE show.  At this point I just felt so completely defeated.  It had taken everything I had to get there, and I couldn’t see a thing.

It sounds dramatic, but at that point I just burst into tears, and sobbed an embarrassing amount into my husband’s shoulder!  It wasn’t really just the fact that I couldn’t see the stage at all… it was more the total realisation that I was ‘disabled’… ‘less able’… ‘differently abled’…. whatever you want to call it!  In the past, I would have been able to just stand for the whole show, no problem.  These days I wouldn’t be able to stand for an entire song.  However because I’m not visibly disabled, I don’t feel that I can ask people to make concessions.  Maybe if I had been in a wheelchair (and don’t get me wrong, I am very grateful that I am not), I would have felt I could ask the people directly in front to sit down so I could see.  But as people can’t tell what is wrong with me by looking, I feel like they would be hostile and judge me, thinking I was just lazy or a bit of a princess!

My husband kindly swapped places with me so I could see through a gap, and I really enjoyed the rest of the show.  I was really grateful to have been able to make it at all, but it was quite a disheartening experience.  I think probably what I would like to get across here is this:  just bear in mind that although someone looks ‘able’, they may be suffering from any amount of invisible illnesses that really affect their abilities; M.E., fibromyalgia, arthritis, Behcets, POTS, MS and so many more.  I would love venues to place just as much importance on their disabled customers as their bodily-able ones – maybe designating part of the seated area to people who genuinely have to sit, so that they can still see and enjoy shows.

Anyway, if you’ve made it to the end of this post then high-five!  I just wanted to write something honest about my everyday life, difficulties and experiences, with the hope that it helps others understand a bit more about chronic and invisible illnesses/disabilities.

Thanks for reading!

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13 thoughts on “The Frustrations of Living With an Invisible Illness/Disability.

  1. Holly says:

    Well written miss cupcake. It’s lovely to see post written with so much meaning and I shed a tear for you babe, it’s not nice being invisibly ill. Much loves babe xxxx

  2. rhosynmd says:

    I totally understand what you mean, I constantly feel like people are judging me for taking taxis for short journeys and especially if I go to a big event like a gig. You did so well to make it through! I just try and behave like there is no-one but me there, just look straight ahead and focus on that. xxx p.s. I love Fall Out Boy too, I went to see them a couple of years ago when they were touring their previous album, such a good show! xxx

    • Katie Cupcake - Life with ME says:

      Yeah it’s horrible being judged… or even just thinking you’re being judged. Sometimes I worry about it and they’re probably not even judging me! Aww it’s cool that you’ve seen them too. They were so good! His voice is just as great live xx

  3. Kate Milliken says:

    Hey great post. So glad you made it and made the most of it. For what it’s worth, shows like that have areas for people who need to sit down for the entire show where the view is spectacular. This would require you to apply for a ticket in the ‘handicapped’ section which I recognize is a mental and emotional issue all its own. Glad you got there. For what it’s worth, I am the founder of a site called MyCounterpane, and if you wanted to tell your story of M. E. and fibro, we’d love to have you. You’d click into the MS section and select ‘other’. We’re working to build a big enough audience of peeps with fibro to open it’s own community. Hope you’ll check us out. mycounterpane.com/ms.

  4. Natalie Tavares says:

    Two things: 1) what is m.e. 2) a comment really. You are very mature. I’ve had fibro for 10 yrs. I just wrote a post about things I’ll do now that I’m 40. One of them was to stop going out of my way to hide my fibro! You are only 30 and you’ve already realized that. Sounds like you are ahead! Best of luck to you.

    • Katie Cupcake - Life with ME says:

      Hey Natalie! M.E stands for Myalgic Encephalomyelitis (you can see why they shorten it haha!) It is sometimes known as CFS (Chronic Fatigue Syndrome) and is characterised by absolute exhaustion (often leaving people bed or house bound), pain, cognitive issues, sleep issues, etc. You can find out more here: http://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/

      So sorry to hear you’ve had fibro for 10 years – I’m just under 3 years and utterly fed up of it already! I think the key thing was that I just *couldn’t* hide it – combined with my M.E it totally changed my life and I couldn’t really keep it from anyone. I prefer it out in the open though, so that people know why I constantly have to cancel etc. I’d love to see your things to do before 40 post, I’ll pop over 🙂 xx

  5. Ali says:

    Thank you for sharing how you feel and what happened. I am similer ability to you by the sound of it, and recently decided I would attempt to go to concerts again as it’s the only interest I still have and with much planning like yourself have made a few. But did you know you are entitled to access tickets? For the reason you’ve said, people standing up, you don’t necessarily have to be a wheelchair user, they cater for people who can’t stand or walk far. I’m in the south so different area to you but O2 Greenwich were amazing. We were sat right at the front, and we didn’t have to queue and went through the back. It was amazing, no crowds to deal with and not much standing around, so next time you want to see someone find the accessible number and call them. They’ll ask if you want seated or if you’re a wheelchair user. Most are understanding of the difficulties obtaining PIP but if you have it, you qualify. You also get a complementary companion ticket. You can also sign up for an access card so you don’t need to go through the proving your disability process to venues using it . http://www.accesscard.org.uk This has literally changed my life.

    • Katie Cupcake - Life with ME says:

      Hi Ali! Thank you for reading and commenting 🙂 Your comment is SO helpful, I really appreciate you taking the time to let me know! I had no idea about the access tickets and companion tickets. I knew I could ask to sit in the accessible area, as a few people mentioned it to me after that gig (obviously I didn’t realise at the time – I thought it was only for wheelchair users). It’s such a relief to think it’ll be much easier next time (and hopefully no tears lol). I do qualify for PIP yep. I’ll definitely be having a look at that access card, it looks so helpful! Thanks again, so much 🙂 xxx

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