Here is Melissa’s story about her invisible illness.
What is the name of your condition ?
I have two conditions, Myalgic encephalomyelitis (ME) and Idiopathic intracranial hypertension (IIH).
How long have you had it for?
When I was 11 I woke up with a rash on my stomach, shortly after that I got an excruciating headache. The rash disappeared with anti-biotics but little did I know that the headache was not going to just disappear overnight, like a ‘normal headache’. For 5 years I had to ‘live with it’, there was no medication or painkillers that would take it away or even mildly relieve it, I had multiple tests, scans and investigations before the doctors decided on a diagnosis.
What are the symptoms?
With my condition/s there are many different symptoms and these can change daily, these range from small things such as feeling sick and dizzy to having pins and needles that last for hours, finding it difficult to sleep and being constantly tired no matter how much I had slept. I also find it hard to concentrate and suffer with a very short term memory. As well as obviously, my headache which I guess now, is just part of me. For five years, I forgot what it was like to not have a headache and now I am lucky enough to have days in which I only have a mild headache and occasionally a headache free day (although, this doesn’t happen often).
What are the daily struggles and how has it affected you?
These symptoms resulted in me having to miss a lot of school due to having to spend a lot of time in hospital which greatly affected both my education as well as my social life. Another struggle that still affects me daily is having ‘bad’ and ‘good’ days and yes, I get that everyone has them. But because of this, I’m unable to plan events and social activities in advance, I don’t know when I’m going to wake up in pain and unable to physically get up in the morning or when I’m going to wake up feeling ‘fine’. I’ve had to cancel lots of plans because of this and also lost ‘friends’ due to this reason too. Also when I go on days out such as shopping, go to parties or take part in activities that people would do every day and not even think about, I have to be prepared to ‘pay back’ for this and often have to spend a day/s in bed to recover. A lot of people don’t understand this, especially as when people see me having fun with my friends and laughing around they don’t realise what I’m dealing with inside and I guess this is one of the hardest things about having an ‘invisible illness’ as when I’m ill the next day, they won’t believe me.
How have you dealt with it?
Dealing with an illness that you can’t physically see, is not easy. A lot of people often don’t believe me, I’ve been called lazy because I was unable to take part in physical activities and people have also told me I was ‘skiving’ because I wasn’t at school a lot. Over time, I’ve learnt to deal with it in my own way, I know how I feel and I know that my friends and family understand this. Thinking positively helps me a lot and even though sometimes it’s not always easy to do, I don’t think I’d be able to deal with my illness now if I didn’t have such a positive outlook on my life. I now try to live my life as ‘normal’ as possible, although there are definitely times when I don’t feel as if I can do it anymore, I have the most amazing family and friends and doctors who provide constant support and without them I wouldn’t be where I am now.
Is there treatment for this condition?
For ME, there is no real treatment that can help to cure it, although there are a lot of different medication/s to help relieve symptoms and pain. I’ve been prescribed a lot of different medications for both my ME and IIH, as well as having to spend a lot of my childhood in hospital wards, both in Sussex and in specialist London hospitals. The medications that I’ve been prescribed during this period have involved me having to inject myself 3 times a day, have multiple different Intravenous lines fitted, such as cannulas, PICC lines to make it easier for doctors to give me medication.
In November 2015, I had a port fitted in my collarbone area– this is a small medical appliance that is installed beneath the skin to give easy access for doctors to give me medication intravenously. I had to have this fitted under a general anaesthetic and have medication pumped in through my port every month, which meant having to go into hospital regularly whilst having treatment. I also had the option to have a ventriculoperitoneal (VP) shunt fitted into my body which helps to relieves pressure on the brain caused by fluid build-up which is caused by my IIH. This involves having a very serious and invasive operation and very often these aren’t always 100% affective and can cause lots of complications. I decided not to have this fitted and feel as this was the right decision.
Did you ever find it hard to speak about it and why?
I used to find my illness/s hard to speak about because it’s hard to explain and often hard for people to understand. I used to be embarrassed and just wanted to be ‘normal’. But now, I feel more comfortable talking about it because it has become part of my daily life and I have accepted it as part of me.
Do you know anyone who has the same condition and if not has that been hard to know that no one you know has it?
Through being in hospital and through online forums I have met people who suffer with the same condition/s as me, it’s nice to have people to relate to and have someone who you can talk to about how you’re feeling without feeling as if you’re being judged. I would recommend this to people who suffer with an illness, whether it’s invisible or not.
What would your advice be to anyone who is dealing with an invisible illness?
My advice to people who are living with an invisible illness is talk to people. Whether that is your friends, family, doctor or a councillor there are people out there who care about how you are feeling and the struggles you have to face. Obviously there are people who will continue to dismiss your illness and believe it or not, in 2017 there are still people out there that are naive enough and still continue to act so narrow-minded about individuals own experiences, beliefs and daily struggles. You need to learn to accept this and realise that people’s negative opinions on your own personal life are irrelevant – sorry not sorry.
What would your advice be to people who are trying to help someone with an invisible illness?
Try and be as empathetic as possible, although you don’t know how that person really feels you can only try and understand how they may be feeling and try and help them feel as supported as possible and never dismiss how they’re feeling as living with an invisible illness can be ve.
Written by Melissa Tittmus
Thank you to Melissa for being brave and letting me share her story, as I know how daunting it can be when you have a rare condition that no one around you knows of. And this is my point… people are scared to share their invisible illness because its a taboo subject, and this is why it’s important to raise awareness, so people can feel comfortable talking about what makes them them. I believe that every disability and illness shapes a person, it becomes a part of who they are, and the hardest part is accepting that.
‘It’s estimated around 250,000 people in the UK have ME.’ (NHS website)
‘Anyone can get the condition, although it’s more common in women than men.’ (NHS website)
‘It usually develops when people are in their early 20s to mid-40s. Children can also be affected, usually between the ages of 13 and 15.’ (NHS WEBSITE)
IIH statistics and facts
‘There is a significant threat to sight.Varying degrees of permanent visual loss occurs in up to 50% and significant disability in 10%.’ (NHS website)
‘IIH is rare. It affects 1 or 2 people in every 100,000. It mostly affects women of childbearing age who are overweight or obese. However, men and children can sometimes be affected as well as people who are not overweight.’ (http://patient.info/health/idiopathic-intracranial-hypertension-leaflet)
Thank you for reading, and I hope people take away something positive from this post!
If anyone wants to share their story, please don’t hesitate to contact me!