Article and art by Emily Bourne
Let’s talk about invisible illness. I have fibromyalgia, a chronic pain illness that that is invisible to the naked eye, but it controls my life and is, inevitably, a significant part of who I am.
Recently, my symptoms have worsened, and I find myself not being able to discuss it with my loved ones because I simply don’t know how: this is my life, these things are somewhat normal to me, and even when they’re new symptoms, they can be intangible concepts to explain. Moreover, talking about it is hard for me and others with similar illnesses. Personally, I find it hard to let people in - I don’t want people to think I’m incapable of doing things (even if I am) and I don’t want their judgement (misunderstanding, assumption, or accusation of exaggeration - ’faking it’). But breaking stigma is important. Finding people who understand or are in the same situation as you is important. Being able to feel normal and relate to others is important.
Chronic illness doesn’t just cause physical pain; it can make my whole being feel futile. I feel completely useless only being able to lie in bed all day, but also wildly emotional and undeniably angry. Yes, angry. Angry because it feels like I am lunging towards achieving my goals, but am perpetually just a few inches away. I am so close to achieving my dreams on a good day, but I’m two steps behind everyone because of this illness that prevents me from giving life my all. This is why support is important.
Additionally, the pain and my impotentness isn’t the only issue. While being in pain all the time is unbearable, the mental strain that accompniesthe physical pain is soul-crushing. One thing that makes me feel sad is the guilt I feel from being unable:
[below i have illustrated some things that make me feel guilty]
[Guilty about falling asleep at 8pm when we were supposed to have a fun late night sleepover.]
[I forget things. But i promise I was listening!]
[getting so sad. (it just hurts so much…]
[being too tired to join in with all the things I used to love doing.]
What has helped me is my support system, medication and meeting people who are authentic in their struggle with illness.
- Frankie documents her life struggling with chronic pain and other illnesses. Her main interest is to spread awareness and not sugarcoat things - make people feel less lonely in their illness and the way their lives have had to change, and give them a few laughs too! ( like the #healthyheathermeme )
- Eleanor helped me deal with accomplishing dreams with her blog post ‘What To Expect When This Is Not What You Were Expecting’. She made me realise that even though it may be harder for ill people to go to college/university, but it’s possible and you deserve to achieve the things you want.
- Rose, known as @my.eds on instagram, also documents and talks about what she’s struggling with and unites the spoonie community. Her authenticity and rawness of her experience educates and creates a safe space for her and her followers to express how they’re feeling.
There are also many Facebook pages dedicated to those who suffer with Fibromyalgia, in which members engage in conversation about worries, symptoms and how to cope. Furthermore, there are online organisations, such as: myfibroteam.com,FMA UK and National Fibromyalgia Association.
Writing this article was important for me to do. I hope this can help me deal with this illness, but also raise awareness about it. Further, i hope this helps people who suffer from chronic illnesses. The comment section will be open below for you to share your experiences, coping mechanisms and anything else you would like to say. Thank you for reading.
Facebook support groups: Fibromyalgia support / Fibromyalgia Warriors UK:SUPPORT GROUP / Fibromyalgia and Invisible Illness: support group.