Welcome to You Don’t Look Sick – our new weekly series about invisible illness and disabilities.
There are 13.9 million disabled people in the UK, but for many of them, you would have no idea anything is wrong.
Lots of people suffer from debilitating symptoms and daily struggles but when they are out in public, they are challenged when they use priority seats or disabled parking.
They’re told ‘but you don’t look sick’ because they don’t use a wheelchair or something people associate with disability.
This series is a look at what it’s really like to live with a disability or illness that no one can see, discussing the symptoms that affect their lives every day and how they are treated when they are out in public.
(Picture: Dan Joseph for Metro.co.uk)Katie Ruane, 34, from London, has been living with the blood cancer chronic myeloid leukemia for 12 years.
CML affects the production of white blood cells as the bone marrow produces too many myeloid cells – immature cells that don’t work properly.
It is a cancer that progresses slowly and it is treated differently to other blood cancers.
Patients with CML do not require intensive intravenous chemotherapy and in Katie’s case, it is managed by taking one chemotherapy tablet each day.
However, CML still causes fatigue, pain and weakens the immune system.
Katie says there is a lack of understanding about her condition, particularly because she looks well, is able to work, never lost her hair and other when she was first diagnosed, has not been admitted to hospital.
She explains: ‘I’ve had someone say “My xyz has the bad leukaemia, not the easy one like you”.
‘This was incredibly hurtful as the person was very close to me and they saw how I was with the debilitating fatigue, but I suppose because I’m not in hospital having intravenous chemotherapy and losing my hair, that was forgotten about.
‘I was also told I was very lucky by that first consultant, and you know what? Over the last 12 years I have felt anything but lucky.
‘Yes, I have my hair, yes I don’t spend lots of time living in hospital, yes I have never had to think about my cancer killing me; but I live in limbo land. I have done for a third of my life and will do for the rest of my life. I will always have cancer. So much of my life is controlled by those little white pills and the hospital.’
What is chronic myeloid leukemia?
Chronic myeloid leukaemia (CML) is a cancer of the blood. There are three stages of CML and most patients are diagnosed in the early or chronic phase. In this phase your body makes too many mature white blood cells called granulocytes.
If the disease is left untreated it progresses through a period of instability known as the accelerated phase, to the blast phase.
In this phase there are too many immature cells (blast cells).
You have very few blast cells in your blood or bone marrow if you’re in the chronic phase.
The granulocytes can collect in the spleen, making it swell.
The blasts can overcrowd the bone marrow, meaning there isn’t enough room for other important blood cells to be made. This can cause many of the signs and symptoms of CML.
Katie was diagnosed in January 2007 at the age of 22, while she was studying for a degree in History of Art at the University of Edinburgh.
She had been experiencing symptoms for around six months but didn’t think it was anything serious.
She explains: ‘I had dropped from a size 14-16 to an 8-10 without having to do anything. This to me, wasn’t a bad thing at all and as it was over time, I didn’t really see how much of a change this was.
‘I also craved certain foods that I have since found out have really good nutrients in them. It’s really quite amazing that I was eating foods to try and help my body without knowing anything was wrong.
‘I also lacked concentration but again I didn’t really think about it. It really kicked in over the Christmas holiday and I just thought it was because I was tired after a busy university term and essays and exams.
Her condition can leave her feeling very fatigued (Picture: Katie Ruane)‘It was the first week of university in the January term when I realised something really was not right.
‘Not only was I knackered all the time, but I also nearly fainted twice in a week.’
Katie was so tired, she struggled to even make an appointment and it was thanks to her flatmate who made her get up and go to an open surgery clinic, that she was eventually diagnosed.
She says: ‘I told the doctor that I didn’t feel right, but I didn’t feel ill either and listed my symptoms.
‘The doctor said – and I don’t know to this day if they meant it, or said it so not to worry me – that they didn’t know what was wrong but they did a blood test and told me to come back in a week for the results.
‘I now know that my symptoms were a list of red flags, but at the time I had no idea. I didn’t go to the doctor worried or on edge, and never expected the series of events that happened next.’
That evening, around 7.30pm, Katie was at home when the hospital called and then told her that rather than waiting a week to go back to the doctor, she needed to go to hospital straight away.
She explains: ‘I said that I would, but I needed to know what was going on. I was over 400 miles away from my parents and I wanted to phone them to tell them what was happening rather than have a stranger doing it.
‘After a series of phone calls from the hospital, and phone calls home to say that something was wrong, I was eventually given enough information to guess that they thought I had cancer.
‘I called my mum on her mobile to tell her. She was in the bread aisle of the supermarket.
‘She said that she loved me and that she would see me in the morning. My parents drove up from near Hungerford via Newcastle to pick up my brother who was at the University of Northumbria, to Edinburgh the following morning.
‘During the various phone calls from the hospital, the person I was speaking to kept on asking how I felt, which began to get a bit irritating in all honesty.
CML also weakens the immune system (Picture: Katie Ruane)‘I found out after I got to the hospital, that they kept on asking me that as they couldn’t believe I was conscious. My white cell count was so high they were astounded I was walking and talking.
‘If I hadn’t had gone to the doctor that morning and walked into the hospital that evening, I would have collapsed over the weekend and would have been taken to A&E.’
When she was first diagnosed, Katie didn’t really understand the seriousness of her condition.
‘The weekend I was diagnosed, I generally felt ok. I didn’t feel right but I definitely didn’t feel ill,’ she explains.
‘I think as it came completely out of nowhere, I just went into shock.
‘Back then, cancer, especially blood cancers, weren’t in the press as much then, so I was completely naïve to the potential severity of it all. Ignorance is bliss.
‘I had my own room in the hospital with an en suite, fridge, TV and DVD player so I was pretty happy. I didn’t realise it was because they were so worried about me and I was on a high dependency ward.
‘On the Monday, when I met my consultant, I was told that I was lucky and that the cancer I have wouldn’t kill me.
‘I would just have to take these really clever pills for the rest of my life, but it would be better than it had ever been and I wouldn’t know that anything was wrong with me.
‘Once I was told that, and ever since then, I have never worried about the cancer that I have, so this has definitely helped things.
‘I do wish, however, that I hadn’t been told I was lucky with the treatment as it’s been anything but lucky.
(Picture: Dan Joseph for Metro.co.uk)‘I think then, and I still do now, 12 years down the line, how do I have cancer? How did feeling like I did and feeling like I do mean that I have this? I think this can be the hardest thing to get my head around.
‘I forget that I have it and then out of nowhere it hits me and I struggle with the reality. I have this for life. There is no end of treatment date. No discharge from clinic. No, “It’s all gone. Off you go and enjoy your life.”’
Katie started taking chemotherapy drugs, which help to stop the progression of the cancer but caused her to suffer from extreme fatigue.
A few months ago, she started a new drug and says she now has enough energy to get through the day, as long as she gets plenty of sleep and does not over exert herself.
She explains: ‘I still don’t know how much I can do. You would think I would, but the problem with chronic fatigue (as a side effect of treatment) is that it just comes out of nowhere.
‘Once minute you are fine, well, as fine as you can ever be, and the next you are out of energy and you have no idea how you are going to put one foot in front of the other to get home.
‘A good day until a couple of months ago was being able to get to mid afternoon without feeling completely exhausted after having between 10-12 hours sleep.
‘It was getting through the day and not crying because I didn’t know how I was going to do it.
‘It was being bothered to make something to eat in the evening rather than having to bully myself through everything and just have eggs and toast. Again.
‘It was not feeling like I’d been punched in the face because my eyes burned because I was so tired.
What are the symptoms of CML?
fatigue, or tiredness – this is sometimes caused by anaemia.
loss of appetite.
unexplained weight loss.
increased sweating, particularly at night.
abdominal bloating, swelling and occasionally pain (if your spleen is enlarged).
unusual or excessive bleeding – for example from your gums or nose.
Most patients with chronic phase CML will have an enlarged spleen, which may cause abdominal discomfort (tenderness around the stomach) and a feeling of fullness when you eat.
‘It was not having leg pain and shooting pains down my skull because I was exhausted.
‘It was not struggling through everything regardless of what I did.
‘And I only took one pill a day. It was all of this because of one little white pill.
‘Since starting this new drug, I can see friends in the evening. I can do things at the weekend.
‘During the last decade of chronic fatigue as a side effect of treatment, what has made it even worse is knowing that it’s the drugs and not me doing this but without the drugs I would be dead.
‘I have kept going as much as I can. I am my own worst enemy. I am determined and have probably made my fatigue worse by refusing to be an ill person.
‘I have pushed myself through a second degree, two marathons but on more occasions than I can remember, it was just pushing myself to get out of bed. I have refused to be dictated to by my cancer and letting it dominate my life.’
Katie works as a naturopath across London, which means commuting every day.
In such a busy city, it can be difficult for people to notice when you might need a seat or some space if you have an invisible illness.
Katie appeared in an ad for TFL about the badges for people with invisible conditions (Picture: TFL)Katie says: ‘‘Until I started this new drug, I couldn’t stand for long and on public transport I desperately needed a seat all the time.
‘A few years ago, through twitter, I found out about the Cancer On Board badge account, which is now a charity and I am a trustee.
‘This badge changed my life and meant that I always got a seat and people were kind and people let me skip the queues in café’s etc.
‘Then when TFL brought out the ‘Please offer me a seat badge’, the two together were like a powerhouse of badges. I have only needed them twice since I started the new drug, and really hope this continues.’
Despite everything she has had to cope with over the last 12 years, Katie is managing her condition and says she is thankful for all the support she has around her.
Katie is an ambassador for Bloodwise (Picture: Katie Ruane)‘I have amazing friends and family and my current consultant is absolutely phenomenal,’ she says.
‘They have tried every available treatment option with me to see if one works AND lets me have my life.
‘Other consultants have ignored how I have felt because of being so young. This consultant acknowledged that I am a sensitive responder and that really low doses do have a huge impact on me.
‘When things were really bad and I spent most of my time on the sofa, Twitter was amazing. I have made some very good friends through that and having that space was very supporting at the time.
‘I’m also an ambassador for the charity Bloodwise. We have a closed Facebook group and that gang is absolutely phenomenal.
‘They listen to me when I am low and miserable and complaining yet again, and never compare it to them and what they are going through or make me feel completely selfish for complaining again.
‘I also blog. I find writing my ‘brain vomit’ very therapeutic.
‘I do as much as possible to make me happy and to focus on that, no matter how small the thing is.’
You Don’t Look Sick is a weekly series telling the stories of people with invisible illness and disabilities. Next week, we speak to Leanne who has epidermolysis bullosa.
How to get involved with You Don’t Look Sick
You Don’t Look Sick is Metro.co.uk’s weekly series that discusses invisible illness and disabilities.
If you have an invisible illness or disability and fancy taking part, please email email@example.com
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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