Chronic illness can be a tough thing to understand for the majority of people, simply because it is often something they are totally unfamiliar with. You hear “illness” and you think of a cold or virus and the quick recovery. When illness is life-long and there isn’t an end goal of getting better, it can throw people.
As with all things that we aren’t familiar with in life, it can be really hard knowing what to say when you come face to face with someone with a chronic illness. So, here is my handy guide of what not to say!
But you don’t look sick?!
I’m fortunate that most of the time I don’t look ill. That doesn’t mean I’m 110% healthy though. I am in constant pain every day, it’s something you get used to, but never totally accept. Part of being me means that I put effort and energy into my appearance and yes, my want/need for expensive makeup and beauty products might make me vain and materialistic but I’m going to forgive myself for that, as it boosts my self-confidence. I don’t want to look like A Sick Person, however you may view them. I hate it when I’m too ill to wash my hair, or when I have to choose between gassing myself out with dry shampoo or an extra 15 minutes in bed, trying to get my wrecked joints working. Whilst I wear makeup daily and as I’ve got older, the amount of makeup I wear has increased, I hate it when I literally have to plaster it on, to make me look a bit more alive and not like a dead woman walking. Trying to make sunken eyes and enormous black bags look pretty is an impossible task.
Although EDS (Ehlers-Danlos Syndrome) is worsening as I get older, I’m truly thankful that I can still walk and don’t have to rely on mobility aids. Sure there are times when I do, maybe that makes me look sick, I don’t know. But you then have to contend with the amazed stares when you’re in a wheelchair and then stand up. Newsflash, not everyone in a wheelchair is paralysed. Maybe one day people won’t look on with the same level of amazement as when Jesus rose from the dead.
Do I need to wear ill-fitting, creased and dirty clothes to qualify as looking sick? Does my hair need to be turning into dreadlocks, having not been washed in over a week? I’m 23 years of age and I refuse to succumb to a life looking drab.
You take too many medications…
This really pisses me off. I don’t want to be taking countless tablets every single day, but I genuinely struggle so much without them, often making simple daily tasks impossible. The more familiar I’ve become with EDS/fibro and mental illnesses, the more I’ve understood that I would be more unwell without medication – they aren’t prescribed for fun. I take tablets to reduce pain, to improve calcium levels, to stabilise the iron levels in my body, to help me sleep, to stabilise my mood, to reduce inflammation in my joints, to stop my eggs from getting pregs, to reduce the amount of acid in my stomach and to protect my stomach from all the other meds…without them I would be screwed. Calcium helps to strengthen my bones, to prevent fractures, I am constantly verging on being anaemic, at nigh, my body produced more adrenaline, making it hard to wind down and sleep…I could continue. Faced with a choice of meds or becoming more unwell, the choice is a simple one.
I would love to reduce the amount of tablets I take. I frequently go to bed feeling like I’m going to vomit due to the amount of tablets I’ve had to neck and it’s not great when your body reaches the point whereby anti-sickness doesn’t work.
Have you tried…?
A vegan diet? Yes. Eating clean? Yes. Taking this supplement? Yes. Having a hot bath and a milky drink before bed? Yes. Mindfulness? Yes. Relaxation music? Yes. Improving your sleep hygiene? Yes.
Don’t get me wrong, I’m not adverse to trying alternative therapies or similar. Pilates has made a huge difference, moderate, regular exercise makes me feel better, physically and emotionally, reducing the amount of wheat/dairy I eat has helped with internal inflammation. But my joints are beyond getting any benefit from taking glucosamine and vitamin C does very little when I’m immunocompromised and prone to every single infection going round.
Oh yeah, I googled that, I think I have it.
Please. Don’t even. I had to fight for years to be diagnosed with EDS (and everything else) and it is not something I wear with pride like a medal. It was a huge relief when I found out what was wrong with me, but that took years waiting for referrals to come through, scans, more blood tests than I want to remember, physiotherapy, osteotherapy, occupational therapy, operations, hours and hours sat in A&E departments… definitely not something that was found out after a quick google. EDS is not the same as hypermobility, please don’t confuse it as such. And please don’t belittle something that, at times, such the life out of me and make it sound so trivial. It isn’t. It is hell.
Google, you ain’t no Doctor.
You’re too young to be sick.
This was said to me in my local mental health team waiting room. I happened to be there at the same time as the older adult clinic was running, so I did look a bit out of place in the waiting room, as I was the youngest there by at least 50 years. I replied with “I’m not here for the older adult clinic, I’m here because I’m a young fruit loop.”*
Here’s a startling fact: anyone can get ill. Illness, of any kind, does not discriminate due to age. Which is kind of it. Anyone can get ill, youth does not prevent it from happening. Sure, the older you get, the more likely you are to become ill, but not having a pension or a free bus-pass doesn’t automatically mean that you will be disease free. Hearing people say that actually makes me feel really ashamed. I should be running around, getting drunk at weekends, staying up late and everything other thing that society expects from someone in their twenties, however that simply isn’t possible for me. You’ve just got to suck it up.
*Disclaimer I was hypomanic when I said this
You have to be more positive.
True, in part because having a negative outlook is only going you feel more shit. I try desperately hard to remain positive about life; I work, I see my friends, I am grateful for the things I have and the good health that remains. But that doesn’t mean that I don’t have periods of time when I feel really down on myself. I think I feel entitled to feel a bit rubbish when my stomach forgets how to work, and my abdomen is so swollen that I genuinely look like I’m about to give birth. Aside from feeling and looking ugly, it is very painful and I just want to hide in bed, under a huge baggy jumper.
Saying no and being realistic abut what I can do isn’t negative, it’s realistic. Pushing myself too hard will, inevitably lead to a flare up, meaning that I am stuck in bed and needing to take time off work. Work is my priority and I pace my life around it. Often that means doing very little at weekends, because I am recuperating, ready for Monday. Underneath that keep going attitude is pain, tiredness and sometimes illness. Feeling sorry for myself doesn’t change anything, but that doesn’t make me brave or inspirational, it just means that I want to be as normal as possible.