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Hidden Illness - The guilt trap of working with an illness.
- Becky
- Dec 7, 2018
- 3 min read
Being ill when no one can see it is both a blessing and a curse! I want to talk about my personal experience of feeling guilty because of my illness and share what it's like to work with a hidden illness.
In my last post I talked about how having a chronic illness can be difficult and how I deal with it. This week I want to talk about the guilt that I have experienced and I know other have felt too when trying to work with a chronic and hidden illness. I myself have Joint Hypermobility Syndrome and Chronic Fatigue; along with both of these I have many other issues that come from them. My illness however, is completely hidden. I look and seem like any other 'average, healthy and able' person. You might think, great! No one needs to know, I can keep it to myself, I don't automatically get judged based on my illness. In the working world, people cannot judge my ability based on my health because they can't see it. As great as that sounds it doesn't really work. It's true, I don't want everyone to know my illness, it's also true that I appreciate that I am not judged straight away but when it comes to working in one place those things don't really help.
Those with JHS and CF will know that not many people understand what it is you have and this is the case for most chronic illness and especially hidden or invisible illnesses. This can make explaining and getting what you need to work near impossible. I was very blessed to find a setting who listened to me and follow my suggestions for what will make working better. So, management are great and the staff are too, but I have to wonder whether they really understand and know I am not trying to be difficult or have an easy life but that it is truly what I need.
Personally I can only manage part-time hours and currently do a 15 hour week. I need breaks during the day because it is demanding on my body to be up and moving. I also need time off to recover when ill or injured because it takes me so long to get better. I require support sometimes when I am having a bad patch and my cognitive skills are slowing down. I don't have a huge social life, I have things but they are all planned out and rarely spontaneous. I don't think people realise that I chose to work, to have to plan my life out so I can work. I am not lazy, I am not trying to just do the bare minimum and trust me if I could work full time and have all the social life and do fun random things, I would take it in a heartbeat.
Having a hidden illness is crazy, me taking time off will seem like the strangest thing to some. I look fine, I seem fine, I work and have a life.. but I only do 15 hours, so why do I need to be off work? I need it because you can't see my exhaustion, or how I feel in my head or that I have no social life right now because I can't manage it. If I could show you it would be great but even then some still wouldn't understand.
This post was for me, in a way to remind myself I am strong and I work hard and I don't have to feel bad. It was also I hope to make anyone else who goes through this know you are not alone and that you too are strong. I also hope that it helps anyone who knows someone with a hidden illness, understand them better. Please use the messenger service if you want to talk or share advice etc.
With love,
Becky
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