I am the face of invisible illness

On Saturday I posted this photo to my social media feeds. I had my Christmas jumper on as we were getting ready to take Dembe down to meet Santa Paws. 

Now this blog post is not having a go at anyone, it is just pointing out what people interpreted from the photo and what was actually going on. On posting I had a few comments stating how well I looked and that people hoped I was having a good day. They were really nice comments / compliments but the truth was I was in 7/10 pain with my joints ( that only eased up a little when sat perfectly still) and every so often I had a pain in my abdomen that felt like I was being stabbed. It just goes to show when other people think you look well there maybe a whole host of things that the few seconds in front of the camera didn’t show.

I am the face of invisible illness, unless I have ptosis or bruising / cuts on my face most people on seeing this photo wouldn’t know that I have been sick for the last 12 years. That I gave up my career due to being off work so much that I was ill-health retired. I don’t think I look very well at all in this photo. Yes I have some makeup on but I look as white as a sheet. To me I look shattered, I am putting a brave face on because all week we have looked forward to seeing Santa Paws and there was no way that I wasn’t going to accompany Jay and Dembe on this trip. I didn’t even tell Jay until we got home how much pain I was in.

When people commented that I looked well, I just said thank you. I didn’t want to have to say “well I may look ok to you but my pelvis, hips, knees and lower back all feel like they have been replaced with metal pikes and are grinding against the joints”. People ( many of my friends have invisible illnesses so get this) see a photo and decided that actually you can’t be as sick as you say you are. They are incredulous that I would drag myself out of the house when in as much pain as I was. I do it not because I am some kind of hero or that I am attempting to prove some kind of point, I do it because I want a life. I want to be able to do things with Jay and Dembe. Jay only gets two days off a week so if we don’t do stuff on those days then I don’t get to go out until the following week, it is as simple as that. Unless I was totally incapacitated I was seeing Santa Paws and getting Dembe’s photo taken. 

The problem with invisible illness is precisely that it is invisible. That means there are no tell tale signs that you can see that show that my autonomic nervous system is wonky, that I have Ehlers Danlos Syndrome or a host of other medical conditions that have come along for the ride. There are no neon signs above my head pointing out to the general public what is wrong with me. It isn’t just me that has to deal with not looking sick when they have a chronic health condition there are just so many of us who are fighting battles with our own bodies that most people have no clue about. It is exhausting and at times it feels like it is a constant battle to get people to understand or believe how much I am impacted by my medical conditions.

I knew why my joints were so bad on Saturday / Sunday / Monday and it was to do with the changes in air pressure with a storm approaching the UK. I spoke to another friend who has arthritis in her hips, on Saturday  and she was in pain as well due to the changes in air pressure. We laughed that we were so bloody predictable. I should imagine most of my chronically sick friends were also struggling with the increase in joint pain despite looking fabulous.

Our visit to see Santa Paws was thankfully very short, we were in and out of the shop in less than ten minutes. All in all I was probably only out of the house for a maximum of half an hour. As soon as we got home I was sat on my electric heated throw to try and provide some relief from the pain in my hips and knees because I was maxed out on painkillers and they weren’t doing anything at all. When my pain is related to air pressure pain killers just don’t work. The only thing that does is the application of heat, it won’t get rid of the pain completely but it will drop it down enough to stop me wanting to cry with it. 

Dembe had some wonderful photos taken.

He was a good boy and sat still for his photos. He does love a good face rub or an ear scrunch so Santa Paws hit the spot! 

Despite the pain the trip out was more than worth it when we looked at our phones and saw the photos we had captured. The bottom photo is the official photo from the shop that they emailed us. Even if I was in that much pain again I would still go out and get the photos done. Sometimes you just have to keep pushing so that you can get out of the house. I know for me there are times when I can’t get out of bed, the pain / exhaustion is just too much. I was lucky it was a day when I could push though. I would have been gutted if it had been a day when I couldn’t and we had missed this opportunity.

What the photo doesn’t show is from the time we got home ( around 10.30am) until 3.30pm I did nothing other than sit on my heated throw. I only moved when I went to the toilet. Jay got me my drinks and something to eat. I stayed in my little corner to recharge my batteries and to attempt to get the pain under control. A photograph doesn’t show you anything other than those few nano seconds it captured when it was taken. I wish more people understood that.

I am the face of invisible illness.

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