The Truth Behind The Photo: Life With Invisible Illness
I’m in London! What? Yes that’s right… I travelled to London today and I’m writing this post to share my story as someone with invisible illness because often things don’t seem as they appear.
Anyone who knows me well will know that I have Adrenal Insufficiency along with a cohort of conditions which make me very unwell on a good day, In fact for the past 6 weeks my health as been worse than it’s been in a few years and I have been pretty much housebound apart from a few trips to the doctors and other health care professionals. I lead an interesting life with invisible illness.
So why am I in London and how did I get here when I am apparently so unwell?. How is it I can travel to London on a train, prance around the city taking photos and eating up a storm?
Well if I shared the photos I have taken it may appear that way. Hey social media is all about appearance and one could easily manipulate photos to make it look like they are having a ball travelling and enjoying the sites of London.
Reality With Invisible Illness
I needed to come to London to see a specialist. For the past few days I have been dizzy and sick and feeling exhausted. I told my husband, I don’t know if I can make it.
However I put every effort to make sure I made it and took the opportunity to get here.
I was given the chance to attend a cookery class in Soho. It’s only for one hour, however it’s work, a paid partnership with a brand which covers my travel and one nights stay here in London.
When your specialist is in London and there is a chance to travel down without paying for £100 tickets you take the opportunity…well I certainly do.
So last night I rested in bed, I wanted to pack but was too tired. I went to bed. In the morning, I decided to just take a handbag. I packed my medication, diary, laptop and a set of thin clothes for night.
I knew I would not have the strength to pull a suitcase so I packed light.
John dropped me off at the train station. I got on the train and rested in the seat for 40 minutes. I made the three minute switch at Manchester to the London train and rested once more.
I couldn’t sleep but I was quite comfortable and travelling in first class.
Travelling When Unwell
I like first class, my ticket to London was first class which meant I was given a meal and orange juice, I also got a water bottle and some snack which kept me going until I arrived in London at 3.30 in the afternoon.
I always stay in the same YHA hostel which is about a 4 minute walk from the train station. I was tired and dizzy but their is a bench part way and I took a break to manage the distance.
I arrived at the YHA, checked in and found my bed. I hopped into bed and slept for a good 4 hours. At 8pm I woke up. Feeling a little refreshed I checked my emails and social media. I then went to get some dinner.
Their are three places I can eat when I go to the YHA, Pizza express, A Pub or Pret A Manger. These buildings are literally next door to the building I am staying and don’t require a long walk.
I’m doing weight watchers or at least trying so I bypass Pizza Express and the pub and visit Pret, which is my favourite.
I stop to take a photo of myself in London. A picture can be so deceiving I think to myself. If I told friends or others on social media that I was in London and shared this photo, they would assume I am well and having a fab break.
It put’s me off. Sometimes people don’t understand through lack of experience I guess but I choose not to share my location on Facebook out of fear of being misjudged.
I arrive at Pret A Manger just before close. Most of the food options are gone, but I find a tasty soup, a drink and a sandwich. The guy at the checkout gives me a muffin “on this house” which was an act of kindness I appreciated.
I quickly go back to the YHA and find a table to eat. It’s 9pm and I am ready to eat. Again I take a photo of the tasty food. Again I think about being judged.
If I shared my meal on Facebook, people might think, “I thought she was doing Weight Watchers“. Why has she got a muffin? That’s a lot of food for someone who has had a gastric bypass.
My anxiety and fear of what others think is getting the better of me. I take a photo anyway.
I have the soup for dinner and plan to save the sandwich for later, but I am still hungry and manage to eat the whole thing.
The meal was great and cost a little over £7. So far I have spent £7 in London. I sit and begin to write this entry for my blog.
I will be going back to sleep soon. This is my life with invisible illness. I still haven’t told anyone I am in London, except my VA who helps me with keeping my blog afloat. Tomorrow, I check out at 10am. I will attend a one hour cooking class and then go to an appointment.
I’ll then get back on the train and make my journey home.
What will people think when I share that I have been in London? How will they react I ask myself. Will I be judged? Will people say, she must not be as unwell as she says she is?
Well maybe they will or maybe they won’t.
I guess with invisible illness comes judgement and when you put yourself out there you open yourself up to criticism and talk.
At the end of the day I have done what I had to do to continue the process of being treated for my health condition.
Yes I have had a nice meal, travelled on a train and slept a lot in a YHA hostel but it was all for the purpose of improving my health.
People will see a photo and make assumptions. It’s the story we choose to share and the truths we tell that open one’s eyes. I felt it was important to share my truth and here it is.
I am unwell and yes I am in London but things are not as they may always seem.
I absolutely love the pictures. I must say you are a very brave woman. The strength that you show is rare. I personally know people who when ill just drop everything and stop doing anything. You have inspired me today. Thank you so much for sharing your story.
Thanks. i’m glad you enjoyed the post. It is easy to curl up and do nothing but I needed to get to the doctors.
To be honest I cannot understand why you need to explain to everyone about your life and your decisions. Yes you were in london for medical treatment but even if you were there just for relax for a day, again would be great! Live and not discuss about anything! My best wishes for a fast recovery!
This is EXACTLY why I need to and want to explain these things! The post is about Chronic illness…. I am not going to RECOVER! If you had read my words you would understand that. I am raising awareness about life with chronic illness and it IS SOMETHING I WISH TO DISCUSS and will continue to do so!
Nathan (@Neshan_Nathan) says
Despite your illness, I am glad you were able to have a good time. Sending you some positive vibes from Asia
The Panicked Foodie says
Invisible illnesses suck. I have a few of them as well, and I have found it really hard to explain to people how it impacts my life. Because invisible illnesses aren’t visible, I think people are generally more dismissive of them unfortunately. Thank you for talking about this very important issue.
Annemarie LeBlanc says
I can relate. I suffer from a chronic illness too. There are days when I just want to stay in bed and rest, but I have to get up and take care of my family, force a smile and pretend to be well. I wish you all the best. Just sit back and enjoy whatever life gives us. We are still far more blessed than so many others.
I understand your sentiment. It is difficult to always put up a facade. My husband suffers from a chronic illness and he finds it easier to fake a smile and say he’s doing okay than to keep explaining himself and his illness to others. He is not going to be cured. We are only aiming for relief from the symptoms.
You are making the most of your opportunities and that’s great 🙂 I think social media makes it very easy to judge people. Did you have to pay the price for your trip? (i.e have some bad days afterwards?). Morgan Freeman has talked about this too – people judging his life by what they see in one photo. Lowen @ livingpositivelywithdisability.com
Unfortunately people very often judge things by its cover without looking into a bigger picture. Well done you for being so independent in London. And at the end i must say that I always go to Pret too, i had been a manager there for 12 years and i know they always keep very high quality and cleanliness. And they are friendly bunch of people. I don’t know much about your suffering but i really hope it gets better
London Mumma says
Thank you for sharing this darling. No one should ever make you feel you can not share what you want, I hope you are feeling better today. x