I often feel like I am living three lives: the one I am so desperately trying to hold on to pre-illness, the one that my family and only very close friends see and then there’s the one everyone else sees. This last life is my invisible illness life. They cannot see the fatigue and the pain, few people ask and if they do they usually don’t want to know how badly it really hurts. It’s just always best to smile and say, “I’m fine.”
There are not many ways you can show others what it means to live with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia. You can show the countless pills you take every day, but other than that it stays pretty much invisible. It’s always hard to explain why you can’t do something. I often get very confused looks when I explain that I just cannot make the walk across the road, because again people are not seeing my invisible, true life – they are seeing an able-bodied, empty façade of a healthy person.
Over the years my ability to walk has dramatically reduced, from the hours I used to walk at the beginning of my illness in the hope that it would clear my head to the under 10 minutes I can now manage. Not being able to make short walks increases the feeling of being trapped in a body that is no longer mine, the feeling of body “cabin fever.” For a long time I could see no way out of this, and stopped going out other than trips in the car. I wanted to be able to go out, spend time with my husband, continue seeing the world and living like my “pre-illness” life as best I could, despite the painful reality.
Most of my friends and colleagues must wonder how I’m still going out and doing things when I keep saying I can’t walk, but there is much they do not know about my invisible illness life. I choose the photos I post online, almost wishing to, at least online, live my “pre-illness” as I once did. I would never say I am embarrassed by my disability, and if someone genuinely asks I will tell them my secret. I just don’t want to show a “visible” illness, maybe it’s because that would strip away any remaining existence of my “pre-illness” life, but on the other hand I do want to improve people’s understanding of what it’s like to live with this illness.
One day we realized it was possible to hire wheelchairs from shopping centers. My husband and I were reluctant at first. I didn’t want to be further reliant on my husband, for him to see me like this, for me to look ill and disabled and for others to see me like this. And surely this would make me less free, more dependent, more trapped. Suddenly, my invisible illness went from being invisible to very clearly there.
I managed to get over our doubts and fears and my husband made a challenge of seeing how fast he could wheel me through the shopping center, how many small gaps we could squeeze through when browsing the clothes sales and how many shops I could be left stranded outside (well, I don’t want to go into video game shops anyway!) This whole new world then opened up to us where we could take short adventures again. For those who are worried about taking this step – well, it changed my life, and changed it for the better. There is no shame in getting some help, making your life easier and trying to get out and enjoy something you can’t otherwise do.
Eventually we took the plunge and we bought our own wheelchair. The wheelchair was going to become part of our weekly outing and thus it needed a name, Berty. I can say we have had some absolutely fantastic adventures and holidays, and put Berty through some really rough trips. To date, Berty has been to Tenerife, Cyprus and Scotland. We have been around archaeological parks and with three strong, fit people we even made up to the top of the Crawick Multiverse in Scotland. The view was amazing. Now it’s summer again and we often load Berty up for picnics and beach trips. Life has become so much more enjoyable and accessible again. I am so grateful to my family who have taken me on all these adventures and allowed me to continue seeing the world.
This photo of me in a wheelchair is one that few people see and it’s still hard to imagine how many people will see me like this. People’s perceptions make me feel quite anxious. Showing this photo is not for attention, as I always rather hide away and pretend this illness does not exist. I am showing this photo as I am happy to be outside enjoying my weekend and this is how I do it. There’s no need to feel sorry for me living my life like this; I’m having fun. I would welcome my friends to come and take me out and push me around, as this would be a novel experience and something new.
Using a wheelchair for outings has been much more to me than just having fun. It has really helped me manage my illness better – less booms and busts, less overdoing things. If I walk just a little too far this would have such a drastic effect on my health. I would first start to feel it in my head, a little dizzy, then my legs would hurt, and later I would be left unable to move on the sofa. With the wheelchair, I no longer feel like I will be trapped on the sofa if I leave the house.
I would challenge those afraid of revealing their invisible lives in public to stand (or sit) tall. We don’t need to be afraid, to hide away in our bedrooms with the curtains drawn and let the days slip past us. I was afraid of using a wheelchair because of my own preconceptions of how society would view me, how my pre-illness life would continue to slip away from me and how my loved ones would shun me. But these were my preconceptions, and as is so often the case, I was so pleased to be proved wrong, to be accepted and supported, to come more easily to terms with my invisible (well, more visible now) life. Take a chance, be less invisible, live your life “face forward.”
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