Imagine you start getting a pain in your knee every so often, you don’t think anything of it. But then that pain turns to both knees, hips, ankles, shoulders and wrists. And it’s just a twinge here and an ache there until it’s not. Until it’s excruciating, shooting pain coming from all of your joints simultaneously. Except this isn’t some hypothetical or imaginary situation, this is currently my real life. A life I never thought I would be living at the age of 21. I knew this could always be a possibility for me, with my dad having rheumatoid arthritis and it running in the family. But, he didn’t start experiencing symptoms until his 50s.

And although I haven’t officially been diagnosed with anything yet, indicators from blood tests and the symptoms I am having has made me pretty convinced. If you don’t know what rheumatoid arthritis (RA) is, to put it simply, it is an autoimmune disease, where your immune system mistakenly attacks the cells that line your joints, which causes them to be painful, stiff and sometimes swollen. It is a chronic illness, and while there are times where it can be better and days where it is worse (flares), it will never fully go away. 

Trying to explain to the people around me the pain I’m feeling when you’ve never endured it before is really, really difficult. It’s unlike any other pain I’ve ever felt before, it’s all-consuming, and some days I can’t even get out of bed. I hide this from those closest to me, the people I love the most, my friends and family, because I don’t want them to know the level of pain I’m living with or for them to have to see me in pain. But it is something that affects me every single day, some days are worse than others. One day I could wake up and barely be able to move and every step that I take is painful, and the next I could be absolutely pain free, but feel overcome with exhaustion – it’s unpredictable and there’s no way of knowing what it’s going to be like, one day to the next. 

Another thing that makes this all the more scarier is the fact that the NHS is currently in crisis. Wait times to see specialists are at a record high and GPs can’t really do much apart from give you a blood test, prescribe you with slightly stronger painkillers than you can get from any old pharmacy, and refer you to see someone else more specialist. I was told by my doctor that I was referred to the urgent rheumatology list, which in my mind means I would be seen within a few weeks, maybe a month at the maximum. However, when I called up the hospital to see where I was on the waitlist they told me that the current wait time is 50 weeks to be seen by a rheumatologist, and they had only received my referral 7 weeks ago so I still had a long time to wait.

After the phone call ended, I just burst into tears, I was at the end of my tether, trying to cope with the final year of uni, writing a dissertation, impending deadlines and my health struggles simultaneously. I was in shock mostly and angry at the whole system; how is waiting nearly a year just to get an appointment with a specialist considered urgent in any way, shape or form. It wasn’t just the wait time that annoyed me, it was how casually the person on the phone was informing me of this, like it is totally normal to have to wait that long to get the healthcare that you need. 

As a result of this, I sought validation and support through other avenues, online, mainly on social media such as TikTok and from medical websites to see what my future might look like, what the process of getting a diagnosis looks like and what treatment options there are. Though RA is a lifelong condition that will never fully go away, there are many medications available to help ease the pain and symptoms. While it is good to do research on a medical condition you could potentially have, and seek support via social media from people who also have the condition, I wouldn’t always recommend it. You know what they say about Dr. Google, it is advised against doing that by medical professionals, as to not worry yourself unnecessarily. There is also so much misinformation and disinformation regarding medical conditions on the internet. 

Though I am absolutely terrified of what my future might look like, and I don’t know what is going to happen, I am just trying to take one day at a time. While this condition will change my life, I am not going to let it inhibit the life that I live. I will learn to live with it.

If you are struggling with chronic pain or a chronic illness, please seek medical help.

If you would like to learn more about rheumatoid arthritis (out of curiosity or if you suspect you might have it as well) here some links below:

NHS Page: https://www.nhs.uk/conditions/rheumatoid-arthritis/ 

World Health Organisation Page:

https://www.who.int/news-room/fact-sheets/detail/rheumatoid-arthritis

Versus Arthritis (charity) Page: https://versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

National Rheumatoid Arthritis Support Group Page: https://nras.org.uk/information-support/connect-with-others/groups/#:~:text=Find%20a%20local%20group%20%7C%20NRAS 

Versus Arthritis Support in Your Area: https://versusarthritis.org/in-your-area/#:~:text=Enter%20your%20town%20or%20postcode,Scotland