'Stop telling me yoga or CBD oil are going to magically cure my chronic illness'
People living with invisible illnesses are often told ‘you don’t look sick’.
Our series speaks to someone living with an invisible illness about what it’s like when people can’t see you are unwell.
Last week, Kelly spoke about life with Ménière’s disease and how people expect her to just get better.
This time we’re with Lucille Whiting, 37, from Kedington, Suffolk, who has ulcerative interstitial cystitis, a condition which creates red bleeding areas form on the bladder wall.
It causes severe abdominal pain, a sudden need to go to the toilet and a need to go more often.
Unlike other forms of cystitis, there is no obvious infection and the bladder can become ulcerated, scarred or stiff.
Lucille describes it as like having a constant severe urinary tract infection (UTI) and it has a huge impact on her life but she says that people don’t understand because, on the outside, she looks like a busy mum of five who runs her own jewellery business.
She says: ‘It’s awkward when someone says “Oh but you don’t look sick” and I don’t think there’s a good answer to it.
‘What am I supposed to say? That my bladder kills and I feel like death? I feel like I’ve been hit by a bus? 99% of the time, I just say I’m doing fine.
‘There is an unbelievable number of people who don’t seem to understand that not all illnesses are visible. What’s sick supposed to look like exactly?’
Lucille was diagnosed in January this year but had been suffering from what doctors thought was recurrent UTIs for 19 years.
She explains: ‘They were always treated with antibiotics which seemed to work for a short while before the issue reoccurred.
‘I never thought anything of it and don’t like to fuss. If I became ill at work, I’d go and get antibiotics from my GP, or if I absolutely had to, from the A&E department at the local hospital.
‘I’d quite often get my medication and return to work a few hours later when I started to get some relief. My managers never had a problem with it as I made sure I got back to work promptly.
‘It was briefly investigated after a few years, as I found certain antibiotics no longer worked. I had a bladder scan which showed nothing, so I went back to taking more antibiotics.’
Lucille went on to get married and they started to try for children. She also suffered from recurrent miscarriages – over the course of 13 years, she had five children and nine miscarriages.
But after the birth of her fifth child, her UTIs returned, and they were worse than ever.
She explains: ‘I was in an indescribable amount of pain all the time. Imagine a bad urine infection. Day and night, 24 hours a day, 365 days of the year
‘By this time, I had built up a resistance to several antibiotics, but this time nothing worked and the pain wasn’t touched by any of the pain medication I could take.’
Finally, after over a year of suffering from constant pain, Lucille was given a cystoscopy in November 2018 – a procedure where doctors insert a tiny camera into the bladder to examine it.
She was diagnosed with chronic ulcerative interstitial cystitis. The condition can’t be cured but can be managed with medication.
Interstitial cystitis is thought to affect between four and 10 million people, and many have mild symptoms that don’t require treatment, but Lucille has the more severe ulcerative type (meaning ulcers are present) that affects five to 10% of patients.
Lucille says: ‘I was so deflated when I did get my diagnosis.
‘When I walked into the consultant’s office and she told me they had found the cause for my pain, I was momentarily relieved.
‘Not for one second did I expect her to say they knew very little about my condition and it couldn’t be cured, just managed.
‘It took the wind right out of me. There’s a big part of me that thought now they had the answer, they would just be able to ‘fix me’.
‘There’s nothing quite like being told that this is it, forever, unless it deteriorates more that is.
‘You have to be a very positive person to move on from that.’
Now, although she has medication to control some of the symptoms, Lucille’s condition still has a huge impact on her every day.
‘My pain is pretty relentless,’ she says. ‘I’m realistic about my illness and there are days when I’m totally sick of being sick, but for me, it helps to step back, breathe and appreciate all the good things I have.
‘The pain is moderate to severe, depending on everything from exercise to what I eat and the weather outside.
‘Pain causes exhaustion, which is a major problem. I get tired very easily and have to pace myself, closely managing my activity levels.’
With five children to look after and her own business to run, Lucille says she has learnt to prioritise to make sure she uses her energy for things that are important to her.
She explains: ’My priority number one always has to be my children. I’ll admit that self-care is a concept that eludes me. I do what I have to do so that I can do my best for them.
‘I carefully weigh up how much energy I have and manage my time.
‘I need to always make sure I’m there to help with homework and for when they need something. I won’t ever let them miss out on anything because of me.
‘It might not do me any favours in the long run, but for now, that’s the way it has to be.
‘I’m up for the school run and I’m out for swimming, music lessons and other after school activities. Most people would never know unless I’m looking particularly tired and washed out.
‘I take regular rests and make sure I don’t eat or drink anything that can exacerbate my symptoms.
‘Apart from activities with the children, I rarely leave the house. I don’t go out socially in the evenings. That was something I gave up a decade ago. Something had to give.’
Her condition is managed with a range of medications and although it reduces the pain, she says it never goes away completely.’
Lucille says: ’I take two kinds of nerve-blockers that help block the nerves to my bladder. They don’t actually fix the problem, they just make me less aware of it. I also take tablets that try and prevent urine infections.
‘There was recently a manufacturing problem with those and I couldn’t get hold of them, resulting in two urine infections in the space of a month. Those are so much worse when the lining of your bladder is raw and bleeds.
‘I can’t ever medicate to the point where the pain leaves me completely because I have to balance my pain relief with the side effects of the medication.
‘It’s not possible to numb the nerves to the bladder without affecting nerves elsewhere, so if the dose is too high, you can suffer from tingling in your extremities, amnesia, visual and speech disturbance, amongst other things.’
Even with medication, there are days when she is too ill to do anything.
She adds: ‘There are days when the illness wins and I hate that. I hate the feeling that the control is taken away from me.
‘I’ve spent a long time learning to normalise my pain. I’ve had to come to terms with the fact that this is now my reality. The new normal.
‘I’ve had to learn how to push it to the back of my mind and carry on because I know there isn’t an end to it. Life carries on regardless.’
When her eldest son was born, Lucille set up her own business Sophia Alexander creating handmade fingerprint jewellery and as her health has deteriorated, she has continued working for herself, only taking on what she can.
She says: ‘I’ve built a small business, trying to create something positive for me and my family that has allowed me to continue working.
‘My illness causes extreme pain and fatigue, so I make sure I never take on more than I can handle or risk letting a customer down.
‘I work with some incredibly talented people which helps a lot.
‘I operate a waiting list which allows me to pace myself, but it does mean I can’t take on the volume of work I’d like to grow my business as quickly as I’d like.
‘It’s hugely frustrating, but I have to keep telling myself that even slow progress is still progress.
‘There are times when I have to step back completely, but I try to use this time productively by working behind the scenes.
‘It’s definitely a ‘when life gives you lemons’ situation.’
Her health means she can’t attend things like conferences and networking events so social media has become incredibly important to help her learn new things and meet people.
It’s also helped her find other people living with chronic illnesses on Instagram, which helps her to feel less isolated.
Although more people are speaking out about their conditions, Lucille wants people to be educated earlier about how to treat people with any type of visible or invisible disability.
She says: ‘Not enough is taught at a young enough age and the media often portrays people with chronic conditions as having imaginary complaints or being lazy. That doesn’t help any of us.
‘It’s impossible for anyone to actually understand what it feels like to have a chronic illness, but empathy would be nice and you can’t expect adults to be empathetic if they don’t learn about it when they’re young.
‘What’s more worrying is that lack of understanding often results in a lot of insensitive unsolicited advice. It’s the one thing that still bothers me and I like to think I have a pretty thick skin.
‘It’s amazing how many people have quite strong opinions on what could ‘cure’ me. I know it comes from a good place, but no, yoga, turmeric or CBD oil are not going to magically cure my chronic illness. Believe me, I’ve had a few decades to try everything.’
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 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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