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You Don't Look Sick: 'I don't lead the life I would like to as a 26-year-old'

Helen Shenton, 26, from Stowmarket, Suffolk, has idiopathic intracranial hypertension (IIH), meaning she has a build-up of pressure around her brain.

The condition causes symptoms that mimic a brain tumour, including severe headache, speech impairment, visual disturbances, blackouts, confusion and blindness.

As part of our, You Don’t Look Sick series about invisible illnesses and hidden disabilities, Helen explains that her diagnosis in November 2016 turned her life upside down.

Helen developed a migraine, which lasted for 11 days and it was not responding to pain relief.

A CT scan came back clear but she was told she needed a lumbar – a needle that is inserted into the vertebrae in the spine to drain the excess fluid. 

Helen says: ‘This showed that the fluid surrounding my brain (Cerebrospinal fluid) was accumulating abnormally and causing a buildup of pressure. 

‘I was told this was a lifelong condition and although it could be managed, I would never be cured of it. The treatment options for it were medication or major surgery.

‘It took a while for the diagnosis to sink in and the face this was a lifelong condition but when I accepted it, it felt like my world had ended. 

‘I felt like I would never be the same again and that I would never achieve anything in life because I would always be held back by this disorder.’

Helen has slowly come to terms with living this the condition but says it has been difficult for her.

She adds: ‘Eventually I learnt that I could still achieve everything I wanted to. I have still and have achieved a massive amount of things in the last six years.

‘But I did become severely depressed as I thought that I would be held back in life and the pain would never end. I still suffer from depression now. 

‘It is hard to see your friends doing things that you should be doing too. 

‘I am lucky that I do get to do a lot of the things I want to do, but there are a lot of things I miss out on and have to cancel because I am unwell, and people don’t see that. 

‘People don’t see me going to bed at 7 pm and sleeping for 13 hours a day because I am so exhausted, or having to cancel plans for a whole weekend because I have been out for one evening. 

‘There are good days and bad days, and not all days are bad. I still manage to hold down a full-time job as a services manager for a mental health charity because I have with great employers who are very understanding, but I don’t lead the life I would like to lead at 26.’

On bad days, Helen is unable to get out of bed because her symptoms are so severe.

‘My eyes will be bulging and swollen where the fluid is putting pressure on my optic nerves,’ She says.

‘The pain will feel like it is crushing my head. I may be unable to speak or to string a sentence together. Any movement will feel like someone has put my head in a vice. 

‘My neck will feel stiff and swollen and no pain relief will touch it. I will have to use ice packs on my forehead and heat packs on my neck and will have to lay completely still. 

‘This may last for a day or it may last for a week.’

Helen relies on her fiance to help care for her during these bad spells, as she needs someone to help her eat, drink, wash and even just take the medication she needs.

She adds: ‘It has almost become a routine when I am having a bad day that my fiance will know what to get me to help me recover as quickly as possible. 

‘I have multiple heat packs in the house and multiple sports drinks to keep my electrolytes up when I am unable to eat or drink anything else. 

‘When I start to recover from bad days and get my energy back, if I go out my fiance will have to push me in a wheelchair and help me remember what to do. 

‘I may also have periods where I blackout or fall over and have hurt myself badly.

‘This means I am unable to go out on my own if I am unwell as there is a risk that I may hurt myself badly. 

‘These are all things that I used to be able to do, things that a normal adult should be able to do. Things that frustrate me and that I find the most difficult to deal with.’

Although these spells are severe, most days, Helen can do normal daily tasks – but the condition does have some impact on her every day.

‘Most good days I can go about my daily life relatively easily, although I never know when I may become unwell, or if I do too much I may have to cancel events the next day as I will have to rest. 

‘Sometimes I will forget how to do things or will say the wrong words and get “brain fog”, so I often have to write things down or get people to email or text me things so I remember them. 

‘I have to set alarms throughout the day so I remember to do things and have set routines such as having my medication next to my bed in a special box so I remember to take it (and to know if I have already taken it so I don’t take it twice or forget to take it). 

‘Even on a good day I will forget simple words or stop during sentences. My vision may also become impaired, especially if I am tired or have been looking at the computer for too long.’

Despite the impact it has on her day-to-day life, Helen says that people don’t understand her condition because they can’t see her symptoms and most people have never heard of it.

She says: ‘One of my old bosses once said to me “well you look ok” when I was trying to explain that I needed to go home when I had such a bad migraine that I couldn’t see and I felt like I was being called a liar. 

‘I didn’t know how I could justify my illness to someone when what I was feeling in my body was so excruciating yet someone looking at me was telling me what I was feeling wasn’t there. 

‘It is heartbreaking and demeaning and it makes you feel worthless and like a liar. It makes you feel ashamed and like you are being judged and like those around you don’t trust you. It doesn’t matter if it’s a stranger or someone you know. It hurts.’

Helen wants to raise awareness of IIH and she is involved with a support group for people with the condition, run by the IIH UK Foundation.

She explains: ‘As well as being supported by my finance and my friends, I am helped by the IIH UK Foundation, which raises money for vital research and treatment. 

‘They are amazing for providing support, information and guidance on any questions you may have regarding anything to do with the condition, symptoms, treatment or anything else that comes with it. 

‘I think there needs to be a change in language around disabilities. Toilets are still referred to as disabled toilets rather than accessible toilets and most still have pictures of wheelchairs on them, rather than other motifs. 

‘There needs to be a lot of education for people in the retail sector around the use of accessible bathrooms etc and I think the introduction of the sunflower lanyard for this is the perfect step in the right direction. 

‘We need more publicity around these schemes, public funding, government and voluntary backing and just better awareness for invisible illnesses so people understand what people go through day to day.’

How to get involved with You Don’t Look Sick

You Don’t Look Sick is’s weekly series that discusses invisible illness and disabilities.

If you have an invisible illness or disability and fancy taking part, please email [email protected].

You’ll need to be happy to share pictures that show how your condition affects you, and have some time to have some pictures taken.

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