Charley Collingwood, 24 (UK)
“I am so much more than just my illnesses!” - Charley.
Q: Tell us about you? What health conditions do you live with?
A: I was diagnosed with Chronic Fatigue Syndrome/M.E (Myalgic Encephalomyelitis) in 2014.
My main symptoms were fatigue, aches, light and sound sensitivity, and brain fog. It was a long period of time having to rule out other illnesses, take a pregnancy test and wait for blood test results before I was finally diagnosed.
I was in secondary school when I was first diagnosed and it meant that I had to drop school subjects that I loved and that I also didn’t do as well as expected in my A-level exams due to flare ups at inconvenient times.
7 years later, in 2021, I was also diagnosed with Rheumatoid Arthritis after years of inflamed joints and a constant lack of energy. This was a real shock to me as arthritis has such a stigma of being an illness of the older generation. This had a massive impact on my mental health and I was diagnosed with depression and anxiety.
It’s hard to think that 8 years ago, at the age of 15, I was told I had an illness that would affect me for the rest of my life. Not only that, but that I’d also be diagnosed with another, only 7 years later.
Find out more about Charleys Conditions - CFS/M.E & Rheumatoid Arthritis - by clicking the links below:
M.E (Chronic Fatigue Syndrome)
information taken from the NHS UK webiste.
Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition with a wide range of symptoms. The most common symptom is extreme tiredness.
ME/CFS can affect anyone, including children. It's more common in women, and tends to develop between your mid-20s and mid-40s.
information taken from the NHS UK website.
Rheumatoid arthritis is a long-term condition that causes pain, swelling and stiffness in the joints. The condition usually affects the hands, feet and wrists.
Some people with rheumatoid arthritis also experience problems in other parts of the body, or more general symptoms such as tiredness and weight loss.
Q: What has been your biggest challenge, or the hardest thing you’ve had to come to terms with, since your diagnosis?
A: I struggle a lot with FOMO (the fear of missing out). When you have a chronic condition, it is so much more than just missing a few celebrations or outings. Sometimes it can feel as though you’re watching your life pass you by and there is nothing you can do to stop it.
I am very grateful I have an amazing and supportive group of friends, but I find it really hard to say no whenever I don’t feel up to doing something. Even if I can make an event, I might not feel well enough to stay for the whole time and I always feel like I need to justify myself.
My friends have never made me feel excluded or purposefully left me out because of my health problems, but I have been in upsetting situations before because it's difficult for people to understand an illness they do not have and cannot see.
I often push myself too hard and end up crashing. There are days where I am too weak to do even the simplest tasks, where I can’t lift the kettle, drive my car and where I even need support getting in and out of the bath.
On difficult days like these, I find myself getting really upset. It is hard to accept this is my reality when I am only in my 20’s. These problems feel as if they should belong to someone much older than me.
I don’t want to miss out and have to sit back and watch as everyone else my age has these amazing experiences, but by pushing myself to keep up I often make myself more unwell.
Q: Despite your challenges, what keeps you going and brings you joy on difficult days?
A: My greatest joy is my family and friends. I feel very lucky to have a very supportive group of people around me, who I know I can rely on when times are tough.
The one person who has made my journey a lot less lonely has been my mum, who has also struggled with chronic fatigue. She’s been there for me through everything and it’s so comforting to have someone so close who understands how I’m feeling.
Whilst I’m sad that we both have to deal with this, I feel so lucky to have her and her constant support and understanding. I honestly don’t know what I’d do without her!
I love to travel, and I was really lucky to be able to spend a few weeks in Australia in early 2020. I had the best time!
I was so overwhelmed with gratitude, because there were points in my journey where I didn’t think I would be able to travel, or do any of the things I loved.
When I feel low, I think of all the things I have achieved and everything I want to achieve. It gives me the strength to keep going when things are difficult. I also try to think of all the things that bring me happiness - Concerts, theater shows, spending time with my friends…there are so many things I have to be grateful for!
Q: It seems you really value your friendships and relationships, but we all know it can be hard to maintain relationships with our loved ones when we are struggling with our health. Do you have any advice on how to deal with this?
A: Maintaining and making new friendships and relationships when you live with an invisible chronic illness can be really difficult, but the biggest thing I can suggest is honesty.
Let your friends know how you’re feeling, but also don’t let your illness define you.
We all know that despite not always being able, we still want to join in and be involved in plans where possible.
Maybe attend a bit of a plan if you’re not feeling well, or suggest something that is more in line with your capacity at that time - It could just be a quick Face Time to catch up.
I used to find myself making up excuses as to why I couldn’t make it, saying I had other plans, or that I had a cold, and in all honesty it really affected some of my friendships. If I’d of just been honest I think I could’ve avoided upsetting myself and people I cared about.
True friends will understand and want to make adjustments so that they can see you.
Sometimes you do have to cancel or say no, and that’s okay. If you just explain to your friends why then they will understand. If you lie and get caught out, then they’ll just be upset.
Right now I am on the train to meet my friends for a weekend away in Paris.
I know if something is too much for me I will feel confident to just say, or even suggest something else we can do instead. They’re great friends and I know they will always understand and support me.
Charley is a wonderful friend!
The fear of missing out can be huge, but it’s something I’ve learnt to deal with over time. There are still points where it upsets me and I find myself asking “why me?”. But I always try to remind myself of the other fun things I’ve done recently.
Q: Tell us about something you're proud of?
I am proud of the life I have been able to build for myself. I have so many exciting opportunities ahead of me!
I’m proud of the friends I’ve made who also have chronic illnesses, but also proud of the friendships that I’ve maintained despite my chronic illnesses.
I’m proud that I’ve managed to find a balance, where I can still do all of the things I want to; I can go on holidays, I can go to festivals, I can do bottomless brunches…it’s just about moderation.
There are times where I need to stop and cancel plans due to illness, but overall I have learnt so much about myself and my capabilities despite my limitations.
I remember how overwhelmed I felt when I was diagnosed with such a limiting condition when I was only 15. Some days it’s still overwhelming and scary, but if my younger self could see me now I know she would be immensely proud.