As a person with a chronic illness you get used to people having the same reaction to you all the time. “But you don’t look sick” is probably one of the most commonly uttered phrases said to anyone with an invisible illness.
As a person who is recovering or has recovered from an illness, a new phrase begins to pop up. “So, how did you recover?”. This is a loaded question, even if it doesn’t seem like it. Whenever I am asked this question I am forced to think of the things that I have been through to get to where I am today. And anyone who has had a chronic illness go into remission will tell you, it’s not an easy path to walk. These are old wounds being forced open for a nice sound bite.
While I understand people are curious and want to empathise with me and perhaps even congratulate me for my struggle, I worry about what will happen when I answer this question. I wonder if the person who asked will take my answer to someone they know who is chronically ill and say “This person had what you have and they recovered by doing x, y, and z.” Because I have been that chronically ill person and I know how much these words hurt. What worked for me might not work for anyone else. And anything I deliver in a sound bite denies the anguish and hard work my rehabilitation cost.
I’ve tried to be polite and truthful and answer to the best of my ability whenever I am asked this question. Recovery is hard and it doesn’t happen quickly or easily. It is something that takes a lot of time, effort, energy and support from the world around you to achieve. If you really care about that person in your life who is struggling with a chronic illness, don’t take them quick fix answers, take them your support. That’s the one universal thing I can guarantee they will need. If you care about me and what I have been through, please instead look to support the messages I am sending about chronic illness rather than to ask me personal questions about my recovery.
This question also imposes a big fat stamp of ‘healthy’ on me. To be honest I still don’t feel 100% healthy.I am most of the way to it and I am able to live pretty much the same kind of life as a person who hadn’t been chronically ill, but my entire life shifted when I got ill. Because I am recovered now it doesn’t negate the experiences I went through, and how much they still influence me as a person. By negating my chronic illness, you negate a big part of who I am.
I am happy to talk at length about my experience with chronic illness with anyone who is interested in listening. I am just no longer interested in answering this question as a part of small talk.
And just so you know, you are all so awesome. Thank you so much for your care and support. It means the world to me.
Every time I see someone struggling with chronic illness, my heart goes out to them… but I rarely tell people that I had ME – ‘cos I was a kid at the time, I can’t remember what it was like on a day to day basis (nearly 30 years on, I still get the odd reminder, which can be pretty awkward to explain when it happens, but nothing like as awkward as dealing with it day in day out), and what “cured” me is almost certainly not an option for anyone else. After all, it didn’t really help my dad, who also had it.
At this point in my life, I don’t even know if it’s helpful for people currently dealing with chronic illness to know that I’ve been there, and come out the other side, or whether I would just come across as a lucky person who wants to say “me too, me too”. And so usually I don’t say anything.
Thanks for sharing. It’s funny how common ME and CFS are when you start talking about them. I know of a lot of people have dealt with this illness in their lives.
There is definitely a lot of stigma associated with health, and I think that it does a disservice to all of us. So many of us are cut off from sharing our own experiences, and the world gets to be neatly divided into ‘sick’ and ‘healthy’. Really health is thousands of times more nuanced and complex than that.
I hope that by talking about my illness and my recovery I can help to shed light on how illness and health are intertwined, and how we need to approach people suffering from chronic illness with compassion and kindness, even when we can’t see their illness.