My Chronic Illness & Me
If you happened to come across me on social media, you’d think I was in perfect health. My Instagram page shows a fun loving, 26-year-old woman, having the time of her life! From tuk tuk hopping in India, to boozing it up in German bars. I guess to the outsider it looks as though I’m always ship, shape and ready for the next adventure. However, in reality it could not be more different.
Apart from the time my appendix had a melt down and tried to break free from my nine-year-old self, I would say I'd lived a fairly healthy life. So when I was diagnosed with a long-term health condition, it felt like the rug was quite literally pulled from underneath me. I started getting pains in my joints and thought nothing of it until they became so persistent and painful that I couldn’t ignore them. After months of telling myself I’d slept funny or maybe injured myself without knowing, they got so bad that I started to wonder if it could be something more sinister. I took myself to the doctors and was surprised that I wasn’t fobbed off with painkillers. My GP decided it would be best if I had a couple of x-rays to see what was going on. Whilst waiting for the x-ray appointment, my left thumb became somewhat demented over night: a large swelling appeared on the joint making it look as though I’d trapped it in a door and it was excruciatingly painful. Days later the same thing happened with my ankle, so I hobbled back to my doctor who said blood tests could hopefully detect what pesky conditions were causing me to swell and ache. Unfortunately, the factors in my blood wouldn’t participate in a straightforward diagnosis meaning they came back inconclusive.
I was referred over to rheumatology anyway, where after about four months of tests and an extraction of what can only be described as yellow gunge, I was diagnosed with seronegative rheumatoid arthritis. It’s here things get confusing, you see, most of us associate arthritis with OAPs. You know, the ones you see struggling to open shopping bags and the ones whose knees creak with every step. It’s true, that is a form of arthritis, Osteoarthritis- if we’re getting technical, but it’s not the only type out there and this common misconception can actually be so harmful to those who don’t match societies stereotypes.
Rheumatoid arthritis is an autoimmune disease where the body attacks the cells lining a person's joints. It causes chronic inflammation, stiffness and immense pain, not to mention fatigue, weight loss and in my case: Anaemia. Days where my knee and ankle are swollen and painful are the worst. I can hardly get out of bed and a task as simple as getting the tram to work is hell. Standing up for 30 minutes can feel as though my legs have been set on fire! I can’t open jars or bottles without aid because my left thumb is constantly painful and typing has also become a struggle, a total nightmare for an MA Journalism student.
The psychical symptoms aren’t nice to have to put up with but mentally it has become a real challenge. Chronic illness and depression are as close knit as Sonny and Cher. Studies over the years have found that people who suffer from long-term health conditions are at a higher risk of suffering with poor mental health. The constant fatigue makes me feel like I’m not being as productive as I could be, which leads me to thinking I’m a big failure. My consultant told me that I would now have to plan my life around this new illness, and I learnt my dream of trekking to Everest Base Camp would no longer be achievable. Due to my new medication: methotrexate, I will have to plan with my consultant when I want to have children, the spontaneity of something so beautiful will now have to be planned with schedules and appoints to the rheumatology department. I think one of the things that has hit me the most was knowing that I would never be able to remain the person I was before my diagnosis and in a way, I feel like I have lost her.
Rachael Mole 2019
My experiences are not isolated, many people suffer with chronic illness related mental health. 24-year-old Science Communicator, Disability advocate and the Editor in Chief of City Girl Magazine, Rachael Mole, has suffered for over ten years with a number of chronic illnesses. Rachael was diagnosed with Hypermobile Ehlers Danlos Syndrome, Postural Tachycardia (PoTS) and Mast Cell Activation Syndrome, in her early twenties. It was a long road to getting the concrete diagnoses she needed to move forward and get her life back on track. Rachael’s symptoms started when she was just 13 years old, if you do the math that's over 7 years waiting for a diagnosis.
Ehlers Danlos Syndrome is a rare genetic connective tissue disease which causes immense pain, crippling fatigue and frequent joint dislocation. At times Rachael would have to crawl out of bed because if she stood up, her hips would dislocate. X-rays scans disputed Rachael’s claims because she was able to pop her hips back in with ease. Doctors told her parents she was making it all up and said her symptoms were simply anxiety and depression related.
“It took my mum connecting the dots, in her vast research she found a private professor in London, who took one look at me and diagnosed me with Ehlers Danlos Syndrome, Hypermobile, type 3. It's a connective tissue disorder. The collagen in my body isn't 'sticky' enough, causing a myriad of bodily complications- some of which, I didn't even realise weren't normal because I had lived with them all of my life.”
After getting a real diagnosis, things started to get better for Rachael, however, years of being dismissed by healthcare professionals impacted her mental health.
“When enough doctors tell you that you're making it all up and it's all in your head, you start to believe it. I thought to myself, what if he's right? What if I'm crazy and I've been making all of this up?”
“That year was a dark year for my mental health. I was still able to go to school, but explaining to friends, to a new boyfriend, what was happening to me was impossible, because I couldn't explain it to myself. I lost all of my school friends due to the distance I put between them and me.”
Since her diagnosis Rachael has seen a psychologist who has helped her to understand that her mental health is a result from her illness and not the other way around.
“I realise now that I can let myself be sad and grieve the life I could have had without illness, and I'm allowed to be anxious about a world which makes people disabled. I've stopped worrying what everyone thinks. The only opinions who matter are mine, my immediate family, my boyfriend's and my dog's, and frankly, to my dog, I'm a god who can do no wrong- and I'm good with that.”
I began to write this piece because I wanted to get a lot of feelings off my chest about my recent diagnosis. Apart from my closest circle, nobody would suspect my health was deteriorating and that I was in constant pain daily. I always worried that addressing my illness publicly on social media would scream ‘attention seeking’. However, after chatting to Rachael I’ve realised that in order to accept and make peace with a chronic illness you should be open and honest, especially to yourself. So that’s where I’m heading next. Having a chronic illness doesn’t make you weak, if anything, it makes you stronger.
If you are struggling with a chronic illness, here are a list of organisations that can help you:
Additionally if you’ve been struggling with your mental health or are having suicidal thoughts, or you know somebody who is, these are the numbers to call to get some help.
Samaritans: 116 123
CALM: 0800 58 58 58
Papyrus (for those under 35): 0800 068 41 41
Childline (for children and young people under 19): 0800 1111
The Silver Line (for the elderly): 0800 4 70 80 90