Welcome to You Don’t Look Sick – our weekly series about invisible illness and disability.
Each week we speak to someone with a hidden condition about what it is like dealing with pain and symptoms when, on the outside, it looks like they are healthy.
Emma Friddin, 31, from London, has rheumatoid arthritis and Crohn’s disease.
Both are autoimmune conditions. RA means the body to attacks the cells around the joints, causing pain, swelling and stiffness, while Crohn’s is an inflammation of parts of the digestive system.
Emma was diagnosed with Crohn’s in 2011 and has been living with the RA since 2015.
She says that one of the most difficult things about living with her conditions is that people only see what is on the outside.
She explains: ‘Often people tell me that “you look really well”. It is great to hear this because its fab to know that I do look well, but it can also be frustrating, because they only see what is on the surface, during that relatively short period of time they are with you.
‘They don’t see you exhausted the next day because you went out, and they don’t see you when your joints are bad and have limited mobility. Looks can be so deceiving.’
Emma Friddin (Picture: Steve Bainbridge for Metro.co.uk)After her Crohn’s diagnosis eight years ago, Emma started to suffer with pain and swelling in her fingers in September 2015 and by January 2016, it started to prevent her from doing simple daily tasks, spreading to her knees, ankles and toes.
She went to see her GP but waited six months to see a rheumatologist, who then officially diagnosed her in summer 2016.
She explains: ‘I was shocked because it’s a condition I stereotypically associated with older people.
‘It was explained to me that Rheumatoid Arthritis is an auto-immune – before I heard this I always assumed that arthritis was caused by ‘wear and tear’.
‘This diagnosis made sense because I was diagnosed with Crohns disease in 2011, which is also an auto-immune condition. I was glad to finally get some answers and knew that there was a way I could feel better and get moving again (literally!).’
Now Emma uses medication to help manage her condition but during a flare, she suffers from severe pain.
What are the symptoms of RA?
The main symptoms of rheumatoid arthritis are:
joint swelling, warmth and redness
stiffness, especially first thing in the morning or after sitting still for a long time.
Other symptoms can include:
tiredness and lack of energy – this can be known as fatigue
a poor appetite (not feeling hungry)
a high temperature, or a fever
dry eyes – as a result of inflammation
chest pain – as a result of inflammation.
‘If I don’t take my medication and/or have a flare, my joints begin to get swollen, painful and immobile,’ she says.
‘For me, it starts with my fingers and wrists. My fingers get really swollen and I can’t bend them. It feels like they have been crushed, that they are really heavy and that they have lost the elastic inside and my movement is limited.
‘You actually don’t realise how much you use your fingers until you can’t use them. Even doing simple daily tasks that you usually don’t even think about, like pressing the button on your spray on deodorant, or squeezing your toothpaste out the tube becomes difficult and painful.
‘Washing up actually takes a lot of finger power as you need to hold the weight of the item whilst pushing against it.
‘As well as my fingers, my knees, ankles, toes are a ‘hotspot’ for me. When these flare this obviously impairs my walking and mobility.’
Emma says medication helps her control the condition (Picture: Emma Friddin)Emma takes about eight different medications to keep herself well. Two of them are immune suppressants which she injects myself; one is a biologic and one is a chemotherapy agent.
Taking medication that suppresses her immune system helps to control her symptoms but does mean that she is much more vulnerable to infections.
‘ I always catch everything going around and that a simple cold can turn into an infection really quickly.
‘I have to be really careful who I socialise with and kindly tell my friends and family that I don’t want to see them if they are ill.
‘I still manage to catch everything going around though and tend to get lots of colds, which almost always turn into an infection.’
And although the medication helps, it does cause side effects.
She takes medication, including injections to help suppress her immune system (Picture: Emma Friddin)She adds: ‘I feel sick, tired and run down most of the time. Even on a good day where my joints are okay, I feel like I don’t have the stamina to do all the things I want to do because of the side effects of my medication.
‘It’s hard because the medication keeps you well, but then makes you feel rubbish in other ways too.’
With her condition being up and down, having an employer who is supportive is also important for managing her condition. She works full-time as Policy, Research and Insight Manager for Healthwatch Enfield.
‘A lot of my energy goes into my work. Thankfully they are really supportive and work with me to make sure I am able to continue working, by making adaptations like working from home and having the flexibility to go to all my hospital appointments.
‘I have voice activated software which I can use when I can’t type and my colleagues are really respectful and careful with infection control when one of them are unwell.
‘If I didn’t have such a supportive team, I wouldn’t be able to sustain a full time job and having a full time job is really important to me.’
Emma (second from left) with friends (Picture: Emma Friddin)Since her diagnosis, Emma says her social life has been impacted and it has changed the way she leads her life.
‘I see my friends and family as often as I can but sometimes it is difficult to keep up with a fully active social life, especially when it involves travelling long distances and late nights,’ she says.
‘I used to go clubbing a lot and used to be the life and soul of the party, but I stopped drinking alcohol when I was diagnosed with my conditions because it doesn’t mix very well with my medication and you realise there is no point making yourself feel rubbish with a hangover, when you feel rubbish anyway.
‘I often miss the person I used to be because I feel like my life has changed so much, but my friends always tell me that I am still the same person they have always known.
‘I always feel bad when I have to let my friends down when I am unwell. I feel guilty because I feel like a rubbish friend and also sad that I am missing out.
‘I am lucky that I have some fantastic friends from school and university that I have known a long time and understand my circumstances, but you can’t help feeling a bit gutted when you can’t do the things you want to do.’
She says she doesn’t want her conditions to stop her living her life (Picture: Emma Friddin)Despite living with RA, as well as Crohn’s, Emma doesn’t want her health to hold her back from living as normally as possible.
She says: ‘I have two long term conditions that will never go away, but it doesn’t mean I can’t have a happy and fulfilled life.
‘I try not to focus too much on my diagnoses because it doesn’t define me as a person.
She has received support from charities (Picture: Emma Friddin)‘I have never joined any support groups or met new people with arthritis, but I have engaged with charities such as Versus Arthritis and Crohn’s and Colitis UK who provide great information and support and remind you that you are not alone at all.
‘I get a lot of support from my doctors, family and friends. It’s difficult though because they can never fully understand what it’s like because they (thankfully) haven’t experienced what I contend with every day.
‘Most of the time there is nothing anyone can actually do or say, you just need someone to listen, make you laugh or keep you occupied. When you are feeling unwell, a simple message just to say hello can make the word of difference. It helps so much to know someone is thinking of you.
In my spare time I also swimming and crafting; but these are things I am only able to do when I am well. When I am unable to do the things I want to do, I get enjoyment out of reading, watching lots of good box sets and hanging out with my two dogs, Daisy and Lily.
‘They are both little bundles of joy and bring me so much love when I am feeling unwell. It’s frustrating not being able to do the things you want to do, but the glass is always half full, there is always a silver lining and every day is a new day.’
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 firstname.lastname@example.org.
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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