You guessed it – today I am suffering. I am suffering real bad. I was under the impression my latest Endo flare – which started after the first of many cyst and endometrioma ruptures – was starting to get under control, but I woke up this morning in a large amount of pain and a niggling cyst-like pain on my right side. Great.
I headed into work regardless (you know what I’m like!) because I was on a non-clinical day which meant if I wanted, I could sit at my desk and not move for as long as I liked.
Thinking about it, I should have known something was brewing because I was experience brief but intense episodes of pain all week. But as the working week ended, I was getting petty sick of telling people I was fine.
The thing is, when you live with an illness that is invisible, it is hard for others to understand what is really going on and to see when you are suffering. And I get that, I really do, but what I don’t get is when you have explained it to people over and over yet there is still a lot of misunderstanding. It gets to the point that it is exhausting to keep telling people how you really feel. And I know I have written about this a few times before here on Endo Bunny, but this week it has been really bothering me.
I spoke to a great colleague this morning, and they were someone who actually had no idea what was wrong with me. You may be wondering why I decided to share my problems, but it was for the right reasons – trust me. During our conversation, this persons said what I (and we) have said all along. This person said that to look at me, they wouldn’t have a clue anything was wrong with me or that I experienced such awful symptoms. They even offered how hard it must be for me to live with something that was so invisible.
I cannot tell you the relief that came over me. Not just because this person was so understanding, but because they had hit the nail on the head – it is hard living with invisible illnesses and the fact they are invisible mean that no one can really understand.
I suppose in a way we have to be brave and honest and tell people what it’s like living with our conditions, and we have to be real with people when they ask us how we are. However, I feel it’s a two-way street – people have to be willing to understand and listen, to get that it is not just a “bad day” or something “everyone goes through”. A bit of education goes a long way.
If we keep on telling people that we are “fine” then no one is ever going to get it. And I understand that there are some people and even some days when the answer “I’m fine” is accurate or all that is needed, but if you’re like me and struggling to carry out your work because the pain is simply disabling or I’ve got an infection, repeatedly telling people that “I’m fine” will mean they will never take my problems seriously, or they’ll assume that what I might look like or act like is normal.
The other week is a prime example. I was at work and it was a particularly busy, heavy and chaotic clinical shift. I’d already had concerns about it because of how much pain I was in, and I had considered not being fit to go to work but I went anyway (award for biggest idiot goes to me). The next day when I caught up with the rest of the team, I’d already mentioned that I wasn’t feeling well at all, but because I had managed the hectic day the day before, I was deemed “fine”. I was deemed “alright”. I was deemed to be completely fit and able and thus the pain or problems I was currently experiencing were invalid.
I think this stemmed the feelings for this week. I decided from that moment on that I was;
- No longer going to push myself or force myself with work – if I couldn’t get something done then I wasn’t going to worry about it
- No longer going to push myself or force myself into work if I wasn’t well
- Going to be brutally honest with people when they asked me how I was
- Going to be brutally honest with people when I had been off sick or having problems
- Going to ensure I was real about how I managed busy, hectic or heavy days
Why was I doing this? Because I’ve realised that no one else is going to look after my health like I was (well, except my husband), and the more I am pushing myself and doing extra things, the more I am suffering – I spend my weekends led on the sofa full of pain relief, my evenings in bed before 9pm and have no social life at all, let alone being able to enjoy a relaxing evening with my husband.
So there will be no more “I’m fine” responses. I think it’s time we made these invisible illnesses visible.