An Open Letter of Explanation to My Friends
One of the most frustrating aspects of living with a chronic condition like AS is that often our friends and family don’t fully understand our situation. I can’t say I blame them as before my diagnosis I had no idea what ankylosing spondylitis was. It took me a good few weeks to learn how to even spell it!
AS can prevent me from spending time with the people I love. I often don’t feel up to it and have to cancel. This can sometimes lead to misunderstandings so I thought it would be a good idea to write an open letter to explain. I don’t mean it as an apology (I don’t think I need to be sorry for my condition and the situation it puts me in) but I do think my friends and family are owed an explanation. It is often hard for me to convey properly when I am plagued with brain fog so here I go...
It’s not that I don’t want to see you
I promise you I do. The daily battle I face with my condition is often a lonely one so I have so much love and time for everyone in my life who is there for me.
I like to see myself as a social person and love being around people but sometimes my body doesn’t allow me to do it. I might be in too much pain to drag myself out of the house or I simply don’t have the energy to do so. Please know that either way me not coming to see you was a last resort.
It’s not that I don’t want to come out
Being at home might sound like a heaven sent when you have a busy schedule and are out and about all the time. But I assure you it does not feel the same when you are forced to do it most of the time. If it isn’t my getting in the way of things then it the fear instilled in me by the pandemic.
Being immunocompromised and forced to stay away from people for so long during the pandemic has had a massive effect on me. I know that I played it cool throughout, but that was because I didn’t want to worry you. The truth is I am still terrified of getting seriously ill and the outside world is a scary place for me after spending so much time away from it.
If the plan involved drinking beer or watching football then you should know for sure missing out was the last thing that I wanted to do!
It’s not that I don’t want to do things
Some things are hard or frankly impossible for me to do any more. Of course I miss doing things like playing football. But I am afraid of doing my body even more damage than it has already done to itself.
I have to be extra careful with what I decide to do because it could have further implications to make my already bad situation even worse. Unfortunately, sometimes I have to put my health first and make boring sensible decisions to keep myself in the best shape that I can.
It’s not that I’m unreliable
I know that I often cancel on plans and more often than not it is at the last minute. My intention is not to let you down. My condition is unpredictable and I never know what day I am going to have until I wake up and even sometimes that can change at the blink of an eye.
You might ask me to do something on a day where my body is functioning well and I will accept hoping that when that day arrives I will be doing the same. But that is not always the case. If I am cancelling last minute it is because I was praying that something will change before the plans started but my body let me down.
Okay, I accidentally apologized, but being raised in Britain it always feels like the right thing to do. I know I shouldn’t feel guilty for these things but deep inside me I do.
Please don’t hold any of this against me. If I had my way I would accept every invitation and be out every single night.
I miss my old self that was able to do just that. But unfortunately my circumstances changed, and nobody is to blame. But I hope you can accept that I am still me. I will be there for you however I can be and I don’t mean anything personal by not being there in person as much as I would like to be.
If I didn’t explain things well before, I hope that this clears things up.
James / Giacomo / 贾珂莫
How much about your AS do you share with others?