An open letter to my friends

I am sorry.

I am sorry that my illness has impacted some of the most treasured things I have, my friendships. When you navigate a life of chronic illness or pain it affects so many things, not just yourself, but how you interact with the world.

The brain fog and exhaustion mean I am more forgetful than before and not as thoughtful as I used to be, I try to remember important events and to do nice things for my friends but I often forget things or remember after the event. I hate not being the person I used to be and being as proactive as I used to be, one of the unspoken side effects of chronic illness is being reactive to things and losing the ability to be proactive. It means setting myself reminders in my phone, making lists and checking the calendar. Although my biggest challenge is trying to remember to look at the calendar in the first place.

Chronic illness kills spontaneity and the ability to go out and have fun like you did before becoming unwell. I fondly recall the days when I could go out and have fun and party and be crazy with my friends. Some of those memories are the best I have and I remember so fondly, but they also haunt me. They remind of a time now lost when I could do those things, be carefree and fun and not worry about the consequences. For me now to have a fun night out it takes careful planning and execution, it requires me to have no other activities planned for the days preceding and the days that follow an event. It means resting all day, careful medication management and pacing myself.

It also means that often I don’t get to join in on everything that gets planned, I often have to say no and that sucks. I feel like I often let my friends down and that I am constantly juggling to make sure I don’t say no to the same people all the time. I am hyper aware that if I say no to the same friends then eventually they may stop asking, and that terrifies me. I value my friendships and love my friends dearly, and don’t get me wrong, my tribe is amazing. Most of my friends have stood by me through everything. From the friend who I lived with when I had my first surgery and helped look after me when I was terrified and in pain and who started this insane journey with me to my other best friend whom I have been friends with since primary school who checks in every day and never complains about me cancelling plans or not being able to party like we used to. I have been lucky enough to make new friends (some of which are 10 years others that are less) who look out for me, my work friends who know when I am in pain and I am struggling and grab me a coffee to help me through the day.  And of course my endo sisters who share this journey with me along with their own and who on those awful days just totally ‘get it’.

Of course other friends have dropped off and this journey has been too hard for them to cope with and I understand that, being a friend to someone with chronic illness is tough, it’s draining and sometimes it’s easy for us to get caught up in a negative cycle and feeling sorry for ourselves. So when we do that please be patient with us, listen to us, be understanding and hang in with us, if we get too wrapped up in ourselves then call us out on it and help us claw our way out of the cycle.

Once you become a parent and have to manage living with chronic illness and the responsibilities of looking after another human being you have even less time and energy than ever before. I juggle living with pain and symptoms with being a parent, wife, friend, daughter and sister, working, volunteering for a charity and following my passion to create a website for others going through a similar journey to know they are not alone. Now I chose to be and do all those things and have all that on my plate and I have to manage that as best I can but I thank my friends for being supportive of my dreams and passions and staying on this journey with me.

I thank my friends for their messages, phone calls, the flowers they send me in hospital, the checking in on me when I am in a flare, for being patient when I am in a down cycle and for being there to have fun and enjoy the good times in the up cycles too.

So to all the people out there supporting their friends living with chronic illness and standing by them, being there in good times and bad, thank you!

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