Living with invisible illnesses can be a difficult thing. When others can’t SEE your pain and you struggle to explain it to them, how is anyone expected to understand? Along with Fibromyalgia and my more recent diagnosis I also suffer from a few mental health conditions, all of these being invisible. Sometimes it is clear for people to see I am not doing so well – I might look drained, or I may cry more often. But there are only a precious few physical signs.
It gets even more confusing when each of my conditions start affecting me differently on a daily basis. One day you may see me out and about, getting shit done and smiling… the next I may be crying in pain unable to get out of bed. The worst is when you do something you know you have to but will regret later, and people say “Oh look at you go, you must be getting better!” Unfortunately, no. I will never “get better”. I am stuck with this chronic illness for life, some days are just easier to manage than others.
I was able to keep all my symptoms hidden from most of the world for a remarkably long time. I never really understood what was going on, so I just did not want to even attempt to explain anything to others. However, in private I felt guilty for letting people down. For spending so much time recovering from life. I could tell people were looking at me like, “What the fuck? There’s nothing wrong with her” at times, and sometimes I even convinced myself it must be all in my head because there were no physical signs. The embarrassment of having to continuously cancel things, making up excuses as to why and the shame of letting people down ate at me daily. I mean, on my good days I was just like everyone else – chasing kids around a park, smashing goals at work, loving life. That made it all the more hard to then explain to people the very next day that I needed my shift covered or I couldn’t attend the date with a friend that I’d been looking forward to for ages.
“My dark days made me stronger. Or maybe I was already strong, and they made me prove it”Emery Lord
I also felt misunderstood so often. I would go to some doctors trying to find answers to my pain and they would just throw me a prescription or send me for scans or tests that always came up clear. I felt so stupid and defeated when they would tell me yet again that there is nothing they can do; I mean I can’t fully blame them, I was standing in front of them with no physical signs, my test results were great. It was all invisible. On the other hand though, this is their job and they are meant to investigate and find answers! There needs to be so much more done in the sense of raising awareness, better education and training and just simple compassion from doctors when it comes to invisible illnesses. Life for people suffering from them is hard enough without even the medical profession making us feel like we are crazy!
Now that I have a name for it I will always talk with anyone who is curious about my illness to educate them, or even just to help them understand me a little better… all while I’m still learning to understand myself a little better! Something that writing this blog has already begun to help me achieve. Next Fibromyalgia awareness day (May 12th 2021) I will be wearing purple, and I hope through this blog that I can help people be a little more understanding of what life is like living with an invisible illness.