One of the hardest things to manage when you’re chronically ill, and long-term sick, is the feelings of guilt when ‘caught’ doing something that society doesn’t expect of you in your current situation.
Early on in my current situation, I was sat in my pharmacy waiting for prescriptions to be filled when I saw somebody that I knew who knew that I was housebound.
Now they didn’t say anything, but regardless I felt judged. Here I was out and about in society when they’re aware that I’ve refused to attend meetings due to being housebound.
The problem in my mind was that I was sat down, and had been for a short while, and while I had difficulties speaking and breathing just saying hello wouldn’t make that obvious.
Ironically, after they left and I stood up to pick up my prescriptions the pharmacist was so concerned with my breathing that they escorted me to my car, made sure that I was safe to drive and made arrangements for my future medications to be delivered to my home rather than for me to need to pick them up.
I still felt judged.
Since then, I have been out less than half-a-dozen times that weren’t for medical appointments. Usually, very early morning or late at night when either the grocery store is very quiet or everywhere is shut so that I can get cash from an ATM without having to deal with people and the scents that they carry on them.
Despite simply trying to attempt an errand that is totally normal I feel guilty about doing so. That being sick, I should be at home 100% of the time. I shouldn’t be seen in public as it gives the wrong impression.
As the new semester starts, and my classes start without me this is going to be worse. I live in a small town and the chances are that I will run into students who should have me as their Prof. I have to recognise though that I am the one assuming the judgment.
It may, or may not be, true that people are judging me. However, I can’t change what people think. Neither do I need to provide intimate medical information, which is my instinctive reaction, to try to explain my situation!
Ironically, having such extreme breathing difficulties and steroid issues is making my disabilities and illness visible. Which helps a little. It only takes a few words for people to realise that I am having a serious problem. Anybody who actually knows me is pretty shocked by how I look too, between steroid bloat and either being white or white tinged with blue… I don’t look so great.
I”m not the only person who feels this way.
Denise Reich writes about spending a sedentary day at a theme park and a family friend being furious with her for doing so when she’s sick, assuming that she must be a fraud.
She makes another valid point: when she was sick as a child she was strongly encouraged to try to have fun still. It wasn’t that she wasn’t still sick but that society understands that children need to have balance and do what they can.
Yet somehow, once we become adults it seems to change.
Perhaps it’s the thought that your tax dollars are paying me to stay home sick. Actually, the reality is that the amount of tax that I have personally paid would cover my own sickness income from the government hundreds of times over for many years, not just the 15 weeks allowed in Ontario on Employment Insurance for sickness.
Beyond that, if I do need to go on long-term disability in the months to come, I have paid my own insurance to cover that either directly or through my employment. So in no way am I using ‘your’ tax dollars to support myself in my sickness and disability.
In this next week are two local events that I would normally be attending without a second thought:
On Thursday there is a fundraiser for the local 2310 Army Cadet Corps and the Algoma Autism Foundation. It is a comedy night, Yuk Yuks. at a local restaurant with a meal provided. Most of the local restaurants have always been exceptional about accommodating my allergies at such events and in the past, this would likely have been safe for me to attend.
On Saturday, one of my favourite country artists, Dolly Parton, is performing at our local arena. I saw Dolly live years ago, in England, and know that she puts on an incredible show.
Right now I’m certainly not well enough to attend either. However, even if I was feeling a great deal better and the risk of allergens low enough that I was prepared to try it I probably wouldn’t attend either event because I know that I’d see people there who know that I’m signed off work sick. I’d feel judged for being out and doing something fun!
In a couple of weeks time, the Sylvan Circle will be on. This is a local drive-yourself tour of art and artisans set up in community halls and artist’s workshops in a loose circle. I haven’t missed more than one since I moved to this community in 2010. It’s often where I get my Christmas shopping done. This year I can’t attend. I don’t have the energy to drive to the nearest starting point (about 45 minutes away) let alone to manage the constant getting in and out of my car, driving in between and the potential for exposures in each place.
However, once again if I was feeling better and able to even just visit one or two of the stops on the route, that don’t have food and would be a lower risk I don’t feel that I can anyway. Again, I know that I’d run into people who I know and all they’d see if my being out and about. They don’t see the two days of complete exhaustion that would follow. The week or two of recovery that I’d lose. I wouldn’t gain from the luxury of being out and doing something fun as a consequence.
I know that a lot of this is my own perceptive of other people. However, experience over the years has demonstrated to me that I’m not far wrong. People do judge you when they see you out when you’re off work sick.
People make assumptions too. They assume that because you’re seen in one place, at a specific time, that you can do other things too.
If I can do my grocery shopping then I must be able to pick up my own prescriptions! The two are completely different. As mentioned, before I can control when I do my grocery shopping. If I go at 7am the store is quiet, there are very few people, the risk of allergens is lower and if I can’t manage it I can just leave.
To even get to my pharmacist I have to get through the gauntlet of perfume and makeup scents that are always at the entrance and near the door! The pharmacy is always located at the back of the store! Previously I’d use the drive-through to manage this but right now I can’t speak well enough to be heard on their intercom system. Thankfully my pharmacy is helping me and delivering my medicines to my home.
So a trip to the grocery store and to the pharmacist are like night and day for me right now. They’re not the same but to anybody looking on they don’t see that.
They also don’t see the fact that I am limited to one-two medical appointments a week because I need 2 days to recover after each. I’m still exhausted after the sleep study on Saturday night and it’s now Monday afternoon. I have done nothing since I got home early Sunday morning except rest.
Regardless, I have to learn to do what I need to do and that will mean, when I feel well enough, that I will be out more in the community and that I hope to be able to do some fun things too.
Recovering from this kind of illness isn’t something that is going to happen overnight. It’s not like I will wake up one morning and suddenly have my old life back. Working out what my life now looks like will be trial and error.
I may never be able to do some things again because the risks will be too high. Others, I might with precautions. Some may be just fine.
Only time will tell. In the meantime, I need to work on ignoring the guilt that I bring on myself and accept that other will judge and that that is not my problem. It’s theirs.
So my plea is this: If you see somebody out and about that you know to be off work sick, or long-term sick or disabled, or they post online, that they attended something for fun please don’t judge them.
Be thankful that they felt well enough that day, at that time, to try to get their life back to something approaching normalcy!