What is an Invisible Illness?
"An invisible illness is an umbrella term for any medical condition that isn’t easily visible to others" (Talkspace.com)
I contacted Sim to see if she would be happy to spread awareness of Invisible Illness because I felt that we should know more about it. Sim is going to talk to us about her experience with fibromyalgia.
I had my own short experience dealing with invisible illness last year when I was diagnosed with Gastritis. I was trying to conduct my life as normal dealing with a crippling pain in my stomach, ribs and up my back.
After a little while, I had to take 6 weeks off work, eat bland foods and hire a FNTP to start my healing process. To the eye I looked fine, yet inside I was in pain, losing a bunch of weight and fearful of eating. It was during this isolating time that I began reading more about invisible illness. I want to thank Sim for sharing her story with us :)
“Just because you can’t see it, doesn’t mean it isn’t there”
My name is Sim, I’m 35 (in less than a week) and I’m the face behind @fab_fibro_fighter.
I have an invisible illness which brands me as disabled, however, I’m not broken…I’m living my life with hope and determination.
Having unknowingly lived with it for several years, I was officially diagnosed with Fibromyalgia (fibro) in February 2020. I had never heard of it until a few months before my diagnosis.
It is a long-term chronic condition that causes musculoskeletal pain all over the body. It also has over 200+ other symptoms, affecting the whole central nervous system (brain, spinal cord and nerves), which results in abnormal pain messages being transmitted throughout the body.
Before my diagnosis, I spent a best part of 18 months, not knowing what was wrong with me. I was suffering with various health issues and symptoms, which were being exasperated at different moments as the days and months went on.
Something wasn’t right and knowing my body well enough, I knew I had to do something.
My intuition was as strong as ever. That gut feeling that speaks to you so clearly and you can’t ignore because it’s like a tight knot in the pit of your stomach. When I get this feeling, I know I’m being guided by a higher being to act on it.
For me in this scenario with my health, my gut feeling kept insisting I push my medical reps for tests and answers when I was being fobbed off or ignored.
You see, fibromyalgia isn’t so easy to diagnose. There is no specific or official testing process. Some people don’t get a diagnosis for months, even years. For some, they may spend their life never getting an official diagnosis. To say this is frustrating is an understatement.
When I got my fibromyalgia diagnosis, suddenly, things started to make a bit more sense to me. I started to recall the time around when certain symptoms started, but I ignored them for various reasons, mainly because I was dealing with life.
I’ve been through a lot and haven’t always had it easy in life, with many obstacles to cross. I have had a fair share of mental health issues, battling depression, anxiety and PTSD (including suicidal thoughts), which I hadn’t openly announced to people, because it was a scary thing to do and a part of me felt ashamed.
When I realised my illness was a result of all the trauma and deep-rooted stress I went through, I was gobsmacked and realised what the human body is capable of. It’s a fascinating and confusing concept.
Through my experience, I have clung onto belief and hope. I believe my condition is real and I hope there will be a cure.
Fibromyalgia can be life altering and debilitating. The condition varies with each individual. Finding a way to adapt to manage your illness is a new thing to think about.
I am determined not to let my illness define me, to live a life that I am dreaming about. The only limitation is our mindset.
Living with an invisible disability can be exhausting and confusing. There are two sides to it and you blend in.
On one hand, it sucks because you can be walking around and people will assume you’re happy and healthy, which can then lead to accusations of you lying.
It becomes a snowball effect due to the large implications. You may lose jobs, you may lose friends.
You may have medical reps who can use the invisible side of your illness against you.
You become even more aware of everything down to how you present yourself.
For me, I must decide whether I should use my crutch one day, just because I didn’t use it on the day prior.
Will people that know me think I’m lying, are they going to be judging me, are they going to question me?
Then at the same time, having an invisible disability, I feel like I’m privileged to not have people staring at me, patronising me, for making me feel worthless.
With everything that has happened over the last 2 years, I started to learn to accept and openly talk about my experience living with an invisible illness.
I don’t make the mistake of ignoring off symptoms anymore and I certainly don’t ignore my intuition when I feel as though something is off. The human body is remarkable.
I started to learn more about self-care and practice it like one does with a religion.
Well, self-care has become a new religion to me.
Pacing myself is a priority, which in return provides me with good days to enjoy myself. On the bad days, I am kinder to myself and take care of myself as if a mother takes care of a child.
Living with a chronic condition is hard, but it has enhanced my compassion and empathy traits than I ever knew before.
I decided to create my Instagram blog page to share my journey and to raise awareness about my condition, with the hope that I can provide some help and reassurance to anyone else living with an invisible illness, that they are not alone. I’m fabulous, I’m a fighter and so are you.
Follow Sim Bamrah @Fab_Fibro_Fighter to learn more about Invisible Illness