This post is inspired by an article that came up in my Facebook feed called ’21 things you learn on your 1 Year Anniversary’. Although the article was talking about romantic relationships, it got me pondering. Living with a chronic illness is similar to being in a relationship with someone else, although there is one noticible difference. Chronic illness is involunatary, no-one chooses to be sick.
So, here goes nothing, read on to see the 21 things I have learnt sincec being diagnosed;
1. Your life will change, even though you don’t want it to. You will never get anywhere if you don’t accept this first and foremost.
2. People will treat you worse. They’ll find it hard to understand, especially if you are suffering from an invisible illness. If you’re young, expect comments about how you can’t possibly be that ill, in that much pain. It’s cruel, mean, and ignorant but it does happen.
3. But people can also treat you better than expected. People can surprise you. Strangers can occassionally do something simple, yet it can make a world of difference to you. It’s important to remember that for all the nasty people, there’s a couple of good’uns.
4. Some people can’t get their head around that your illness can fluctuate. ‘I’m sorry, I’m flaring too much to come visit you today’ ‘Yes, I know I managed to see … yesterday, but that doesn’t automatically mean I can do the same today.’ ‘In fact, the reason I’m too ill to go out today is because I went out yesterday.’
5. Along the same lines, some people cant understand that you will not get better. When you explain that it isn’t just a *insert generic illness*, that you are chronically ill, people will get confused. And there’s an awkward silence, and an uncomfortable look. Or the person just refuses to look you in the eye and makes their excuses to leave ther conversation.
6. Some people will look at you differently and change the way the treat you once they know you are sick.
3. The general public don’t seem to understand mobility aids. Bizzare, right!?!?! I get asked in nearly every taxi I get in ‘what have you done to your leg?’ when I use crutches or my walking stick. It seems like people think that you must have had an accident, rather than being sick. And don’t get me started on the comments I get when I use my mobility scooter!
7. Similar to the last point, people wont understand that you can still be chronically ill if you are young. Yes it does happen, I am not the only 22 year old with a chronic illness that leaves me disabled.
8. Use The Spoon Theory to explain being ill to able-bodied people. I have a feeling most people who could be reading this will have already come across the theory written by Christine Miserandio, but I thought it deserves a place in the list.
9. Every now and again you will come across people who really want to help, even if you don’t need/want the help. Some people really like to help people. They usually just want to be useful, and they don’t necessarily mean it maliciously or patronisingly. They just might not realise that us spoonies are capable of most things, and sometimes getting involved makes the situation more complicated. Blame ableism. This rings true for me when I am driving my mobility scooter through doorways – when other people hold the doors open I get nervous about running over their toes which ends up me misjudging the distances and ramming into the doorframe instead.
10. You will probably loose some of your friends. Yes, it’s horrible, and it shouldn’t happen, but unfortantely it does. Your ‘friends’ will become distant because they don’t how to treat you anymore. Your ‘friends’ will avoid you because they are nervous about what to say when you talk about your health. If you can’t resolve the awkwardness by a friendly chat to explain what you feel is helpful and what isn’t, then they don’t deserve to be your friend. It is not your fault if they become distant.
11. On the other hand, some of your friends will prove their worth. Even people you wern’t particually close to can surprise you in unexpected ways. Never underestimate anyone.
12. You will make new friends! Social media is a wonderful thing, and new friends from facebook/twitter/instagram have supported me during the rough times.
13. As patronising as it tends to sound, it is worth learning to ‘pace’. The amount of medical professionals that think my ME will be complely cured if I just pace better!?!?! But seriously, it is important. You will need to slow down, and if you pace your days it’s likely you will get more done overall. Don’t fall into the trap of having a good day and then overexerting yourself, it will just end in frustration when you crash.
14. Pacing only goes so far. You will have to take rest hours/days, and that’s ok.
15. You will have bad days, and flares that may last more than a couple of days.
16. You have to accept that you will miss out on things, and move on from the disappointment.
17. You will have good days. Enjoy them when you have the opportunity to do so.
18. No matter what anyone tells you, you are not a burden. You are a human being, just like anyone else. Just because you are sick it doesn’t mean your life is worth any less.
19. It’s ok to admit that you’re struggling. It’s ok to admit you need help. Don’t struggle on with a poor quality of life all by yourself.
20. You are not alone, there is support available in more than one form. Most chronic illnesses have their own charity or support network, many of them represented with social media accounts. There are also many support groups along a variety of themes, someone is always there to help. Social media allows you to connect with people with the same illness’ throughout the world, you will always be able to find someone which has had a similar experience or find advice on how to deal with a certain symptom.
21. You will be ok. When you’re in the midst of a flare, it can feel like it is never-ending and that there is no way out. But don’t panic. Take a deep breath. You might not get cured, but you will be ok.
These are my 21 things I wish I had known a year ago. But thats what life is, a journey. You learn things along the way, and with a chronic illness there may be a few bumps along the road but you will always come through it. I promise you. You surived another year, and heres to more to come!