Chronic Illness : The Curse Of The Invisible (wo)Man
A chronic Illness diagnosis brings with it many symptoms I suppose you would expect. Expecting them however, didn’t make managing them any less difficult; losing my vision in one eye, the repercussions for my mental health, being in constant pain and experiencing fatigue I never knew was possible for example.
When I was diagnosed with Multiple Sclerosis, a quick google of my condition explained to me that these things we’re likely to be the case. The positive about knowing what to expect is that as I fought against those I was already experiencing I could myself to battle those which were to come.
What I didn’t expect however, was just how differently things would be for me socially and, what was even less predictable to me - The intense social exclusion.
“I am just a human being — solid, needing food and drink, needing covering too — But I’m invisible. You see? Invisible. Simple idea. Invisible.”
The Ghost At The Feast
Illness of any kind makes people feel uncomfortable. Perhaps it reminds you that you are not invincible, maybe you do not know what to say to someone having that experience or maybe it’s hard to know someone else is in pain. But, to be completely honest, I think the issue is that illness highlights a major flaw of humanity in general. As people, we tend to notice and respond to that which inconveniences ourselves before considering much else.
The Invisible (wo)Man
While the physical and mental symptoms of my condition were one of the hardest things I've ever experienced, finding myself no longer invited to events, forgotten and even judged for being too sick to show up has easily become the most painful.
So while those turned me into the ghost at the feast, as time went on I began to realise that a mixture of people’s discomfort around illness and often me-centric attitudes saw me transform into the invisible man. No longer invited, nowhere to be seen.
I think both these experiences stem from a lack of communication. There is very little discussion about how you can be more socially inclusive of your chronically ill friends. So with this in mind, this post is designed to open up that conversation. To give you the insight and information you need so that if you have a friend/family member living that experience, they don’t end up feeling isolated, forgotten and sometimes even blamed, for the social inconveniences that a Chronic Illness can so easily create.
Don’t Stop Asking
Often, we will feel too unwell/ in pain to be able to attend events. Trust me, this feels way worse for us than it does for you. Sometimes, after this happens a few times people stop inviting us to things. That shit really hurts. So please, even if you think we won’t be able to attend, please do us the honour of making us feel included regardless!
Be Open To Alternative Solutions
Even better? Offer them. If we can’t make something important because we don’t have the capacity and we offer to perhaps do dinner another time please graciously accept and no it is the best we can do. For bonus points, offer them yourself! Nothing feels better than someone empathising with the situation and suggesting an alternative instead.
Remember the Spoon Theory
Those of us with a Chronic Illness only have X amount of spoons per day. This means we have to be very selective with what we use each spoon for. The number of spoons we have also isn’t consistent. For example, after I have an infusion I have 30 spoons whereas around Jan/Feb i have at best two. This means I try to see my friends in person at the times I have the most spoons, but when I have very little will catch up with them for a virtual coffee online.
Flexibility Around RSVP-ing Closer To The Date
The nature of many Chronic Illness means we are unlikely to know how we will be feeling way in advance of a date. If you have an upcoming big event planned in advance, please be open to us RSVP-ing at a much closer time. We appreciate this could be inconvenient for you so there is where communication comes in. If certain numbers of meals need to be ordered for example, maybe we could just bring our own? For us it’s about finding a solution that works for everyone.
Stop Saying “Nice Of You To Make An Appearance”
Or anything sentence of that nature. We know. Like dude, we know we miss important events. But trust me, it is way more heart breaking for us than for you. Sentences like this make us feel as though you think we made a choice not to show up. As if we are selfish and inconsiderate and it really feels like shit.
I missed my own brother’s wedding and that had to be one of the most heartbreaking and hurtful experience of my life attributed to my illness. At the time I was severely immune suppressed due to the medication I was taking to help halt my disease progression. I had been recently in hospital with a huge infection, that antibiotics had become resistant too. I had also just found out that due to one of the medications I was on to help with disease progression, as a side effect caused me to develop skin cancer. My teeth were breaking because of the steroids that I was on, and my life was generally pretty fucking shit. The decision though wasn’t mine to make and I remember speaking to my Neurologist and him stating that something as a simple cold could and might make me die. As hard as it was to not go and be around my family on such a special day, I had to say no and I cried the entire day. Some people took it better than others and even now people bring up my absence which cuts really deep, without them knowing what really was happening behind the scenes.
Learn about Chronic Illnesses
Many people have very little understanding of what a Chronic Illness actually is. There are many different types and they cause many different symptoms. If your loved one is diagnosed with a Chronic illness, make the time to understand the ins and outs of their experience. This will make way for more empathy and be a greater motivator to take action on the suggestions above.
On An Endnote
For me, missing key events and milestones in the lives of those I care about is one of the most difficult repercussions of my chronic illnesses. Not only do I have to miss out, I feel guilt, shame and intense isolation as a result. The friends in my life who have utilised the suggestions above take away so much of that pain for me. I very much hope that for those in your life with a similar experience they can do the same.
If you would like to know more about living with a chronic illness follow my instagram here and I always welcome input and discussion for further conversation on this matter.