Carolyne Bennett, 44, from Southampton, has rheumatoid arthritis – an autoimmune condition where the body attacks the cells that line the joints, making them swollen, stiff and painful.
It differs from osteoarthritis, which is the most common type of arthritis, which means the cartilage around the joint is damaged, causing pain.
When most people think of arthritis, they think it is a condition which affects older people and Carolyne says that people aren’t always very understanding.
Speaking to Metro.co.uk for our You Don’t Look Sick series, Carolyne says: ‘I don’t people believe I have the condition because I look so well.
‘I almost think people think I am just being a hypochondriac but they have no idea what it is like behind the scenes.’
Carolyne first noticed a problem in 2013 when parts of her body suddenly started to swell up and she experienced very severe fatigue.
She explains: ‘I work as a life coach and it started to really affect my work.
‘I was trying not to fall asleep when I was with clients. It was a fatigue that just wouldn’t go away no matter what I did.
‘I was told I had Morton’s neuroma in my foot, which is something that athletes get but I hadn’t done any running or anything like that in years.
‘For about a year and a half, I went back and forth and was trying orthopaedic insoles and all sorts but it just wasn’t going away.’
Carolyne then got another lump on her knuckle and went back to her doctor but she was told it was a ganglion, which is a harmless lump.
‘It didn’t go away and it became more and more painful,’ Carolyne said.
‘If I knocked it slight, it was excruciating. Then other joints started swelling up and my wrists became so painful that I struggled to hold a cup of tea or coffee.
‘Just getting out of bed was a nightmare.
‘My joints started stiffening up to the point where I couldn’t walk. I remember sitting at the top of the stairs crying my eyes out because I just couldn’t get down them.’
Her condition also caused anxiety and she struggled to leave the house.
She says: ‘The anxiety was so bad. I was trying to run my business and care for my daughter.
‘I needed to take her to school but just getting into the car was like going into the lion’s den because my anxiety was so bad.
‘I started to get really bad brain fog and it was such a strange feeling.’
Eventually, Carolyne paid for an appointment with a private GP as she was desperate for some answers.
‘I felt like I just couldn’t go on like this,’ she said.
‘He suspected that I might have rheumatoid arthritis because the welling was all over my body.
‘I didn’t know anything about it and he told me he would do a blood test but I would have to wait two weeks for the results.
‘That was excruciating – just waiting to find out.
‘When they came back, he told me I did have it and he just looked at me and said: “I’m so sorry”. The way he said it made me think “Oh god, what does this mean”.’
Carolyne was offered medication but she was trying for a baby with her partner at the time, which meant she couldn’t take this medication.
She says: ‘It was hard because I was self-employed and there was financial pressure, which made me stress, which made the condition worse and I wanted something to help.
‘But the drugs were very heavy – they are similar to those used for cancer. I decided to try and manage it myself.
‘I went to a naturopathic doctor and I learnt a lot but I lost a lot of weight – I went down to seven and a half stone and I am 5ft 9 so that is underweight.
‘My joints started to show signs of deformation and I needed to manage it differently because I was going to end up using a wheelchair full time.’
Carolyne started to work with her doctors more to find a balance between medication and holistic practices that managed her condition better.
‘She says: ‘I went to a different doctor, who found the right medication for me but I continued to look after myself and I used meditation and mindfulness to reduce stress and reduce my symptoms.’
Although her new regime helped, her joints continued to deteriorate. In 2018, Carolyne was in her garden when her hip gave way and she was rushed to the hospital.
She was taken for an emergency x-ray and they found that her bones were grinding against each other and she needed a total hip replacement.
She says: ‘They told me that don’t like to do it on someone my age because they last a maximum of 20 years and a second one has more of a chance of not working but they told me I had no choice.’
Since the operation, Carolyne says she has been walking a ‘tight rope’ with managing the condition.
She says: ‘I live a healthy lifestyle but if I don’t, I go down fast. I get very sick, I am in a lot of pain and I have the brain fog and deep fatigue. I will be bedridden for a couple of weeks.
‘I have got used to managing my body and I know when it is coming so I do try to think about what I can do. It could be stress or it could be what I am eating.
‘I stick to a plant-based diet as much as possible. Any grain gives me deep fatigue and brain fog. I can’t eat anything processed. I am really limited on what I can eat.’
Carolyne’s daughter is now 19 but when she was growing up, being a mum with a chronic illness was difficult.
‘Every day felt like a battle because I didn’t have much choice. I had to get her to school but I was in constant survival mode,
‘I felt like I was just getting through minute by minute.
‘My daughter had to be a lot more than what would have been expected of a young girl and she would be helping me. It was upsetting but there was no other option.
‘She would worry about me too. It was quite a burden at a young age.’
Carolyne wants to speak out about her condition to help other people understand the impact of invisible illnesses.
She adds: ‘Humans are very quick to judge without knowing that there’s something else going on behind the scenes and I just want people to step back and think about that before they say anything.’
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 youdontlooksick@metro.co.uk.
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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source https://metro.co.uk/2020/01/26/you-dont-look-sick-people-think-i-am-being-a-hypochondriac-because-i-am-young-12122742/
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