One of the most common questions those of us with invisible illnesses get asked is,” What is the worst part of your condition?”.
For me personally, I think a lot of people expect my answer to be the pain I am in all the time, and yes, the pain is honestly horrible and I wish I could eradicate it completely. However, after years of constant pain, you get used to it and it becomes more like a roommate that you never wanted but get along with for the sake of keeping the peace.
The worst part of my illnesses is the fact that they are invisible… it doesn’t matter how hard my friends and family try to understand, they will never be able to unless they suffer from a chronic illness themselves.
I have spent so many years hiding my illnesses behind a mask for fear of being judged and it’s only in the last year that I have started being open and honest about my health and how I’m feeling. During my journey of learning to accept myself and my illness, I found myself wondering why I’ve spent so long hiding my illnesses from everyone, and the words I kept coming back to was ‘hypochondriac’ and ‘loneliness’.
I couldn’t count how many times I have been called a hypochondriac in my life (both directly and indirectly). Looking back, most of my school memories are plagued by that one word.
When I was 14 and I dislocated my kneecap for the first time (after 3 years of subluxations), I was made out to be a hypochondriac by the medical centre staff at school. Even now, almost 12 years later I can still hear the nurse’s patronising voice going “well if you really think you can’t walk without pain then I guess you’ll have to use crutches, but make sure you’re still walking properly with them…”. It was this moment that lead me to start wondering whether it was all in my head. Did I just imagine that my kneecap had dislocated just from walking? Did I actually just fall over and convince myself that my kneecap had dislocated?
However, the most poignant moment that made me start hiding my illness happened when I was in the last year of my A-Levels. I finished year 12 and very quickly became seriously ill. I spent the majority of the 9-week summer holiday in tears because I couldn’t concentrate on anything, every single move I made hurt, I couldn’t keep any weight on and I felt like a shell of myself. I turned 18 that summer and I was determined to enjoy it. A few days before my birthday, I managed to enjoy a trip to London to watch the Lion King with four people who I thought were my best friends and who had always promised to be there for me (spoiler alert, only one of them was truly a friend). On my actual birthday, I managed a few hours shopping and lunch out with my mum, before I spent the rest of the afternoon so exhausted that I couldn’t stop shaking and being sick. All this time, I was being bombarded with texts from my “friends” trying to plan a surprise birthday party for one of my “best friends” who turned 17 the day after my 18th birthday. I tried and tried to get out of going to this party as I felt so ill but I was continually guilt tripped into attending, so I did and I spent the whole time wanting to burst into tears because I felt so unwell. During this whole period, I had countless doctors appointments, where each time I had a blood test, they would happily exclaim that my results were all fine and therefore this was good news, because it meant I was just tired and not unwell.
Year 13 came around and after years of my “friends” convincing me to board with them, I finally became a boarder and moved into my new room at school, to start what was supposed to be the best year of my life so far. Pretty quickly into the school year, I came down with a throat infection that completely knocked me for six and I was signed off school for a week. I had to miss my “best friend’s” 18th birthday party, which devastated me. When I eventually returned to school, this friend started deliberately ignoring me (despite us sharing a room). I eventually plucked up the courage to ask her why she was so annoyed at me and she told me that I was out of order for missing her birthday, because she had come to mine. She proceeded to tell me that I couldn’t have been that ill that I wasn’t able to attend a birthday party and a few days later she had moved out of our shared bedroom and left me alone. We never spoke again.
As I battled with feeling so unwell but having all medical tests come back negative, I became more and more quiet and withdrawn. Rather than asking if I was okay, my “friends” slowly but surely started abandoning me. I quickly realised that showing how ill I was didn’t bring me support, it just made my friends leave me, so I started masking how I was feeling with a smile and a laugh. I was lucky in the sense that my room was surrounded by friends I could easily mask my pain with. But I didn’t study any of the same subjects as these friends and therefore, I sat in every single one of my lessons, with the “friends” who had abandoned me, trying to stop myself from crying whilst I watched them all cut me out of their life.
The whole time, I was hoping that at least one of my teachers would notice what was happening and reach out to me but none of them ever did (or maybe they did notice and they just chose to ignore it…).
Eventually, in January 2013 I got diagnosed with ME, after spending 75% of my 3-week holiday in Australia asleep due to extreme exhaustion. I felt relief knowing that I wasn’t going crazy and that there was actually something wrong with me. However, by this point I had become well accustomed to my mask, so I would laugh and joke about it to cover up the pain and grief I felt. I couldn’t bring myself to tell my “friends” what was wrong, because by this point, we had barely spoken since September and I already felt like they didn’t care. It turns out, I was right… at the end of the year I confronted each of them and asked them why they stopped talking to me or inviting me to spend time with them after four years of solid friendship. Their response was “we just thought we had grown apart and you seemed happy with the others so we just left you to it”. [Lesson to everyone: if one of your friends suddenly seems withdrawn and quiet, don’t just assume you’ve grown apart, make an effort to find out what is wrong and what you can do to help. Let them know that you’re there for them whenever they need you.]
From then on, I kept my illness to myself as much as possible. I told my flatmates that I had ME and EDS when I started University, but I never really went into detail. All they knew was that I was often too exhausted to go out and I couldn’t drink alcohol. It wasn’t until our final year that I started showing them the true extent of my illnesses.
It has now been almost seven years since I received my diagnosis of hEDS and I am finally learning to be open and honest with people around me about my health. I’ve come to terms with the mental trauma that my final year at school caused me and have finally sought help for the anxiety and depression that I’ve been secretly struggling with ever since. But it isn’t easy.
Having an invisible illness means constantly fighting battles with your mind over whether you are genuinely in severe pain or whether you are just a major hypochondriac like everyone says you are.
It’s questioning whether you are genuinely always exhausted or whether you are just lazy.
It’s spending more time with medical professionals than with your own friends.
It’s spending your free time doing physiotherapy exercises, just to help you stand up.
It’s panicking every time you park in a disabled bay, that you’re going to get yelled at for not deserving to park there.
It’s pushing yourself past your limit because you don’t want to look like a hypochondriac.
It’s questioning whether you’ll ever be able to be a parent when you barely have the energy to look after yourself.
Having an invisible illness is a lifelong battle, not just physically against your health but also mentally, against all of the demons that your illness brings.
So, for those of you who are lucky enough to not suffer from an invisible illness, when we become quiet and withdrawn, when we say we’re tired or in pain, please don’t just brush it off or tell us a story about how you know exactly how we feel because you once had the flu.
Just listen to us and let us moan without trying to force solutions onto us (we are well aware of what we can do to try and relieve our symptoms, but sometimes things are so overwhelming that we just need to vent). Let us know that you’re there for us whenever we need us and that it’s okay for us to not be okay. It will help us more than any medication ever could.