Why I Worry About Leaving the House When I'm Off Work With Chronic Pain
There are many struggles of being believed while off sick with a chronic illness.
I am currently off from work with chronic pain. I have been off in the past as well because I’ve had too much pain to work. I can find it difficult to sit still for long periods because of the pressure on my back and position of my legs, and I also have issues not sleeping due to pain, so I am too tired to work.
The first thing I thought when I was signed off was, “Oh my goodness. Everyone is going to think I am faking because it is so close to my wedding!”
This is not how I should be feeling! I didn’t think, “Oh gosh. I am getting married in 14 days, I hope I am better for that,” or, ‘My body is shutting down on me, I wonder what is wrong.” The first thing that went through my head was that people would think I was faking my illness.
The day after I was advised to go off work I needed to have some tests to see if we could find out the cause of the pain and issues with movement in my arms. Even getting to the doctors and nipping into my local shop for lunch, I wondered if I would be seen out and if people would question my illness.
My friend uploaded a picture of us having a pot of tea together earlier this week and rather than looking at the picture and being happy with the memory, the first thing I thought was, “Everyone will think I am not sick because I left the house to go for tea.” There is a difference between working for 10 hours and going out for tea with a friend. What the photo doesn’t show was that we tried to exercise (as recommended by my doctor) and I was in so much pain we left early and went for tea. After tea, my back was in so much pain I had to lie down the whole rest of the day!
On Sunday my mum came to visit, I asked if we could go out the house to a garden center, just to get out and move around a bit. My mum and my partner both thought that if I was seen out while off, people would get the wrong impression. They are loving and caring, trying to keep me safe, but why would anyone I know compare half-an-hour of walking around, looking at plants, to sitting at a desk for a whole day.
You might think my mum and partner are over reacting but they aren’t. The amount of times my pain and illness has been questioned because I have gone out and done the smallest thing! I have forced myself to friends’ birthdays, weddings and I have typed through painful finger dislocations to try to show the people closest to me I care.
I have been called a liar regarding my pain in the past, specifically for being in pain one day and dancing at a wedding the next, for having dinner at my local pub after saying I was hurting earlier in the day, and having friends for coffee in my own house when I had knee dislocations. After years of dislocations, although painful, they don’t affect me allowing people into my house.
If I had the nerve and I wouldn’t look silly, I would tattoo over my whole body, “I am sick – I might have good days but I still have pain. Do not call me a liar.” I would carry my doctor’s notes around with me so people could see the amount of medication I have had to take, the operations I have had, the specialists who have confirmed all the health issues I have.
What people need to realize is that if I am feeling OK or at work, it is not anyone’s business what I do. My job is mostly sit-down but my doctor wants me to try build up my strength by moving around. This is currently working out as, “Move around, pain killers, nap, and repeat.”
I am trying and if I want to move around in town or in the garden center, I can. I should not feel like I have to walk around in circles in our houses because people cannot understand that I can be off and still leave the house.
I am fully aware that in the past during flare-ups I have explained to people how I cannot leave the bed, I cannot use stairs or eat. But there are different levels of pain. I am still hurting but I am moving and trying so hard so that I can enjoy my wedding day.
To anyone who knows me and feels like I want to be off work and that I’m am not sick – try spending your days with a dog crying to be walked and knowing if you walk him you can’t do anything else for the day, looking at mess in the house and not having the energy to tidy, knowing you have to do your university work but not having a brain from only getting a few hours of sleep.
I might leave the house for a coffee, you might see me laugh. But that does not mean I am lucky to be off work. I miss my work colleagues, I miss feeling useful, I miss sleep, I miss turning around without pain in my back and neck and I miss being able to sit down without pain. I miss my normal life. Just because I am out for an hour or two does not mean you can judge me.
To anyone who feels the same as me, please try to look past these people. Try your best to ignore what other people say and be proud of everything you manage to achieve.
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Thinkstock image by bilalcinar