“Be kind, you never know what somebody might be going through”21 May 2020
Angharad is 26 and is currently studying at home in Swansea. She was diagnosed with SAPHO syndrome (a chronic condition that affects the skin, bone, and joints) two years ago but has had symptoms from the age of 15, which she has struggled at times to manage.
Mental health and anxiety have been a huge part of Angharad’s journey with arthritis. We spoke to her about experiencing the unknown, how that made her feel, times when she felt at her lowest, and how she overcame these difficult periods to achieve her goals.
A vicious cycle of pain and anxiety
When I moved to Cambridge to start my undergraduate degree, I was initially very homesick, and I think the stress began to exacerbate the inflammation I experienced, which made me more anxious.
I was told by a doctor at the time that I had health anxiety. It was a low point of my life. I remember thinking that I was losing my mind, that I was weak and had a low pain threshold.
I didn’t know what was wrong, so had no coping mechanisms and would try to eat, drink and shop my negative thoughts away, only for them to keep reoccurring.
I later moved to London for my Master’s and thought things would get better, as the stress and expectation of Cambridge would be gone, but my condition got worse.
My lectures were only a five-minute walk away, but I would end up sweating with tiredness and feverish symptoms on the way and would fall fast asleep once I got home. I started missing most of my contact hours and entered a cycle again of thinking that I was a failure and unappreciative of the opportunities I had.
These negative thoughts were reinforced by other people’s opinions and I myself started to believe that I was just a lazy person.
There is often a reason for the way you feel
I can see now that I was in a depression for years. I would wake up with dread and would cry most days. It was a low that I didn’t think existed until I was in it, and it terrified me.
I should have got help in that time, but I was in such a negative space, I couldn’t bring myself to take that positive step forward. I worked a lot on supporting mental health services in the university at this time, trying to turn the negative into a positive by helping others, whereas I needed help myself.
One day I went to the GP to get painkillers for my back. I had been in and out of GP surgeries and physios for the pain but was always told it was from bad posture, sitting at a desk. It was at this appointment that I was told I had early signs of arthritis in an x-ray from two years ago, which I was never told previously.
It was a long and emotional process from then to my diagnosis around a year later, but the feelings I’d been experiencing for years before this all started to make sense.
Although my condition continues to challenge me, I have never been as low as I was in that time, I have gone back to being the happy, positive person I was before I went to university and I am more grateful for that than I can put into words.
Managing my condition now
I deal with things in a completely different way now because I understand them and don’t accompany every bad day with negative thoughts about myself.
Of course, it’s still hard at times and when I’m feeling unwell, it’s more difficult to think rationally about achieving even small daily tasks. Care and compassion go such a long way in those times of vulnerability.
It can be isolating to have arthritis as a young person, but Versus Arthritis has been a shining light of positivity and support in this process. Understanding my condition better has helped me override fears of the unknown.
I’ve recently started having flare ups where new joints are involved and that can scare me, and I find it frustrating on days where I can’t get on with work I need to do because I’m feeling unwell.
But I try not to think too deeply about it and focus on what I can do. I take things one day at a time, and on days I can’t get out of bed and I try to accept that and focus on when and how it will get better.
Achieving my goals
Maintaining my goals has been key to me keeping a healthy mental state. In those dark years, one thought that kept cropping up was how I was going to cope in life.
From an early age I have been passionate about politics, and achieving positive change through it, but during those difficult periods at university I questioned my identity, who I was or what I was going to do. Asking those big questions, which I didn’t know the answer to, would peak my anxiety.
Once I got my diagnosis, I gradually started to understand that it wasn’t my inability or lack of passion holding me back and this slowly helped me realise that I could achieve my goals, but would just have to accept that the timeline would shift.
I decided then to take some time out to concentrate. I deferred my Masters at LSE and went home to Swansea. It was a difficult step and a huge push, but with every piece of coursework I submitted and every exam I did, I began to feel like my identity was coming back and my life was starting to make a bit more sense.
After graduating I took up an amazing offer to study for a Hilary Rodham Clinton Scholarship at Swansea University, my hometown. It was a dream come true. Secretary Clinton had been a major motivating force for me, with moving speeches on the topic of resilience (and I even got to meet her!).
Through my course, and spending time at home, I feel like I’ve come back to myself and my confidence is growing.
Where I will go from here, I don’t know. I’m realistic about my limitations, but I’m also very hopeful and for the first time in while I am actually excited about the future and determined to keep thinking big!
My tips for coping
In times of negativity, I try to take myself into nature, I find looking into at the ocean puts things into perspective.
I also try to avoid unnecessary potential stresses like social media, and watch something to take my mind off it, listen to calming music, have salt baths or if I can, do something productive which takes little brain energy like cooking, painting or gardening.
I’m still figuring things out, it’s trial and error with my medication and I have unpredictable days of pain and exhaustion, but I’m getting there and on the bad days, I remind myself that I will have more less painful and less fatigued days.
I want those who are going through difficult times to know that it doesn’t have to be like this forever and that, although your timelines may change, you can still achieve exciting things in your life.
Use the support available to you whenever you can and ask for help if you need it, and most importantly be kind and understanding to yourself and others, you never know what people might be going through.
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