Living with an invisible disability is a strange thing. Sometimes, you wish you had something visible, so people wouldn’t default to the belief that you’re making it up or imagining it. But then, when you have visible signs, experience often leads you to downplay these visible symptoms, brush them off as no big deal and make sure people know that you’re not exaggerating anything to make it seem worse.
Then of course there’s those people who delight in their triumph because they could tell you were disabled. They gloat, with a smile on their face and often a wink to rub it in, that your disability isn’t invisible, because they saw it. They knew. Oh how clever they are.
It’s led me to often tell people that my disability is “mostly invisible”. People who see me in passing, on the train or meet me once very briefly probably wouldn’t be able to tell, but people who see me every day and get to know me soon recognise the signs of bad health days over good ones and notice the little things that a stranger might brush off as a temporary injury.
I have a vivid memory of having a conversation on a day when I was limping quite badly and a (not close) friend asked what I’d done. I told him that I often limp and he laughed and told me that I didn’t. “No, you definitely never limp.”
Then, for months, every time I saw him, he would tell everyone else who was around I claimed to limp and try to get them to back him up that I never, ever did. Some people took his side and some took mine. We don’t speak anymore. I got bored of him having a closer bond with my right leg, and its so called imaginary limp, than me.
Another visible sign of my conditions are my medication use. I take medication at least twice a day, with painkillers as required. Stories around painkiller use and abuse come and go in the media and, due to current news events, are having a moment once again. During these highlights in the media, people’s attitudes around painkillers change drastically. They see certain types of painkillers and start nervously chewing on their thumbnail, nudging anyone else who is around, whispering and then, at some point, someone will have “the talk” with you.
Painkiller addiction is a horrible side effect of today’s society, but it is extremely dangerous to assume that everyone who takes painkillers is addicted. There are days when I literally cannot function without painkillers, which leads me to another visible symptom: crying in pain and everything else that goes with it. That, of course, is one visible symptom that very few people have ever seen.
Another effect of medication is people commenting on the amount and combination of pills that you’re taking. There’s nothing like a complex combination of prescriptions to turn everyone around you into doctors and pharmacists. “Should you really be taking all of those together? It looks like quite a cocktail. Maybe most of your issues stem from side effects?”
When you live with an invisible illness, whether it’s completely invisible, almost invisible, or mostly invisible, people love to tell you how to treat your symptoms and fix everything. It’s probably coming from a good place, but a lot of the time, it’s a better idea to take a moment and think about what you’re saying before you say it.
And, if you do see the signs of an invisible illness in a friend, it isn’t the time to break out the champagne and celebrate your awesome observational skills. It’s a time to appreciate that someone who probably hides their symptoms on a day to day basis more than you could ever know, feels that they’re safe enough with you to not have to do that.
Take care,
Donna
Self-care snippet
As some of you may know, each April I participate in GloPoWriMo, writing a poem every day throughout the month. This year however, I caught a nasty bug partway through and fell behind with my poems! I was going to try and catch up in one giant poetry writing marathon, but the more behind I fell, the more pointless it seemed, particularly as we hit the last day of April. So as an act of self-care, instead of beating myself up over the missed deadline (it isn’t the first and won’t be the last), I’m taking my time with the remaining poems and they’ll be done when they’re done.
Things I’ve seen, heard, read and talked about
Businessman Steve Morgan’s step-son has Type 1 diabetes. He told BBC Breakfast why he’s donating £50million to fund new treatments. Meanwhile, £50m of research funding for Motor Neurone Disease hasn’t filtered through. Nicola Waters, who is living with MND, urges the government to free up the funding that was announced last year.
Energy prices: Fears and cutbacks as hike hits disabled families The awful impact that the energy price rises are having on families who rely on electrical equipment to care for children with disabilities.
Exercise instead of taking painkillers, arthritis sufferers told While this isn’t as clear cut as the headline suggests, this new advice is causing a lot of issues for the disabled community. Telling people who are in severe pain that exercise may aggravate their pain at first but it’ll get better isn’t really helpful in most cases. I do exercise, but wouldn’t be able to do so without my medication, because the pain would be too severe and I would lose my mobility entirely after certain exercise. I understand why doctors rely on general guidance, but treating individual patients as individuals and formulating individual treatment plans would be far better for health and would likely save more time and money in the long-term.
What to do if you are low on spoons I’ll be honest, this seriously wound me up. “Originally used by the chronic pain community to describe energy and stamina, it has since become a more widely used metaphor for effectively explaining your limits.” This is a huge oversimplification of the spoon theory and non disabled people appropriating it isn’t right. Also, it is used by the whole disabled community not only those living with chronic pain. I don’t use spoons myself, but really think the word “energy” could have been used here. Spoons are used to explain to non disabled people what living with a disability is like. They’re not there for them to point out they just have more spoons and sometimes run out too.
Just Aretha – Bombed Out Church, Liverpool A great show I reviewed for North West End UK that highlights that as the world changes and disabled people become more visible, the labels and presumptions about life with disability can also increase.
When catwalks are barbed, by Emma Seasman Page 30 of this newsletter features this fantastic poem about life with a chronic health condition.
It is an unfortunate fact that we are expected to function at the same level as a healthy person. However unbeknown to on lookers, we constantly have to input more energy to do so. We therefore become more exhausted and when we have no option other than to stop, our excuses can easily be dismissed as lazyness.
Although we go though an awful lot it makes us stronger, It’s a strength that we need to get through each day. However, it’s a strength we would not need if we didn’t have our conditions.
Life can feel very unfair at times, but this additional strength of character we hone, helps us emotionally and physically deal with this.
I really connect with what you say. You have a great insight into invisible disability. It’s sometimes very frightening only someone in our situation can understand.
Many a time I underplay the symptoms because it’s embarrassing to explain and hurtful when people scoff as if it’s nothing and they’d be able to cope.
One day they may have to, only then will they know. I don’t wish our conditions on anyone but occasionally I would like them to be in our shoes just for a day to help them appreciate what we go through.