The true cost of chronic invisible illness. And I’m not talking about the strain on the NHS or the economy due to lost days at work.

I’m talking about the personal cost. I read a piece recently about a woman who had had her  Disability Claim denied because her assessing Dr decided that, after viewing her pictures on social media “the person depicted in most of these posts appears to be a young woman who is engaged in life activities, awake, smiling and alert. They do not appear to depict an individual who looks chronically ill”. He saw literally a snapshot of her life, he didn’t see the other 23 hrs and 55 mins of her day, the effort required to look happy, force yourself out of the house, to endure the ever constant pain and exhaustion is impossible to impart. Every day is a struggle, every single day.

My relationships have suffered, with my friends as, after a day at work, all I am capable of doing is getting myself home, getting my child to bed before I am literally on the floor with pain and exhaustion. So no more socialising for me unless it is in very short time frames, I have had to cancel plans so often that I just don’t make them any more. With my partner, a lot of the time, merely having my hand held hurts, I think you can see where I am going with this. He is a loving and patient man but why should he sacrifice his needs because I am ill?.

I was off work sick for a substantial amount of time and while my employer was very understanding I do realise that being a team member down impacts on the business and my colleagues, the anxiety of staying at home is real, it isn’t an opportunity to put your feet up and relax. I was due to start my Phd in January of 2016 but had to defer due to my newly diagnosed illness and I commenced in September instead. Today I saw my Supervisor and after discussions had to acknowledge that I am going to have defer this semester too and start again in the September of this year as I cannot keep up with the work required. I cried about this and I am not really a crier.

I am not the mother I was or want to be. It was Lulu’s birthday last Friday and I promised her a trip to McDonalds after I got home from work and hospital (I’m in the middle of a 8 week treatment course). By the time I got home I was so exhausted and in so much pain  that I was shaking and couldn’t think straight so I lied to her and told her that McDonalds had flooded – this has actually happened before when it rains- and that we would go the next day but Saturday came and I couldn’t use the last of my energy driving there as we had to drive to a friend’s house for Lulu’s dinner, I am constantly having to make choices based on my energy and pain levels which is acceptable but of course as a parent, and friend and partner, these choices impact on others.

I had a brain procedure sone on New Years Bank holiday Monday but my veins are so bad they couldn’t get the cannula in, after a number of goes they managed it but by the afternoon the bruise was enormous and black, I couldn’t keep it disgusted so Lu saw it and was clearly concerned, it looked awful. Why should my child have to see these things? She is 6 years of age, she shouldn’t think her mum is sick. Last ear I had Erythema Nodosum all over my arms and legs, big painful red swellings, I couldn’t have Lu on my lap or hold onto my arm because it hurt so much. How frightening for her that must have been? Not being able to cuddle mummy when ever you want because you will hurt her?

As a side issue my vanity has suffered greatly. Months of being bed ridden and increasing doses of steroids have left me overweight, bloated – hello moon face !- and spotty, thanks for the steroid endured adult acne. Lulu announced the other day that my tummy was so big it looked like I had a baby in it but that she knew I didn’t and that I was just very big – I’ve had to coach her endlessly on not using the word ‘fat’ as it is hurtful to people. She also added that her dad’s girlfriend had a very small tummy because she wasn’t big – thanks Lu, I just has t0 smile through gritted teeth and agree.

I can no longer walk very far, before slowing to a snails pace as it is very painful but I walk as much as I can, you know cause its healthy and all that. I spoke with my GP about applying for a disabled badge for parking so I could park closer to the station so the walk would be sorter and the amount of pain I would have to endure would be lessened but apparently I don’t fall within the criteria, the ability to walk more than 50 metres means no badge. I can walk more than 50 meters, in agony, and pain that is so exacerbated that it remains with me most of the day. I am one of those people that fall into a grey area. The fact that I go to wok every day appears to mean that there is nothing wrong with me, that I need no other support or assistance. I go to work, because I have to, not because I necesarily feel well enough to do so, I have responsibilities, a child, a mortgage and it’s just me and my daughter.  So essentially unless I am entirely bed ridden I am not eligible for any assistance. The fact that a day at work (see feature photo of me on train home) means that the other 12 hours of the day are  written off is irrelevant. Cleaning my house is a painful exhausting  and very time consuming event, so I am caught in a Catch 22. At the moment I feel like I am merely existing, functioning, getting though one minute, one hour, one day at a time. Doing the practical and necessary things as far as I can and then there is nothing left for ‘me’. My Phd was for me and now that has had to be shelved.

This post isn’t about self pity, I don’t feel sorry for myself, I feel upset and frustrated and tired and old and frightened. I never thought that at 42 I would feel this way. Never.

So the long and the short of it is just because I look ok, just because I go to work everyday, just because I smile does not mean in any way that I am actually ok. Invisible illness is real, it affects 1000s of people, trust me when I say that I do not feel good. I am trying my best, my absolute best, I cannot explain how hard I am trying.