One of my biggest struggles with chronic illness was learning to say “no”. I went from being someone with a very active social life to someone who had to plan even the smallest events with absolute precision. I quickly learned that chronic illness was a factor in every decision I made.
My social life took a back seat as I struggled to manage my health while working and running a home. I chose to keep working far longer than I should have as I couldn’t bear to give up my career without a fight. Click here for my article about losing a career to chronic illness.
My health declined as a result of pushing myself too far, for too long. In those early days my health wasn’t a priority. I was determined to push on as if nothing had changed, but things had changed. Learning to say no was vital to protecting my remaining health, yet I still struggled to say that word. Fear and guilt won every time I was faced with a task or event that I wasn’t well enough to cope with. I was afraid of losing my friends, my social life and my sense of self. On the rare occasions I did say no, guilt reigned and consumed me. It was a relentless circle, and one which caused me a great deal of harm.
It took me a long time to get comfortable saying no, and to let go of the guilt that used to accompany that word. In this article I’d like to share how I learned to say no and the impact it had on my life.
Saying no is self-care
Perhaps the most important thing I learned in those early days of chronic illness was that saying no was a form of self-care. The times I said yes, when I should have said no it was only me who suffered. I would say yes to a social event or helping a friend out when I was mid flare and it would make my recovery from that flare twice as long. People didn’t realise that I went home from an event and then couldn’t get out of bed for days. They didn’t see that by choosing to spend time with them I was prioritising them above my health. It was so difficult to learn to prioritise my health, but I realised I had to. If I didn’t my health would only get worse.
I had to decide what mattered more to me, protecting my physical and mental health from further damage, or investing my time in people who often didn’t take the time to understand what I was dealing with. I soon discovered that “those who matter don’t mind and those who mind don’t matter”. That pretty much became my mantra when learning to say no.
Saying no is self-care. Practicing good self-care means I am in better control of my health which in turn means I can do more of the things I enjoy with people I love and who matter.
Educate but you don’t have to defend your choices
I know talking about your symptoms or diagnosis can be difficult. However, we cannot expect people to understand our limitations if we don’t try to educate them. You don’t have to share every detail of your medical history, but it can be useful to give colleagues, friends and family some basic information. This will help set expectations, and hopefully make them more understanding when you have to say no.
If you’ve given people some basic information about your illness or disability and how it impacts your day to day life, then you’ve been fair to them. You’ve given them the chance to be understanding and compassionate. You’ve set realistic expectations for what you may or may not be able to do on any given day. Whether someone then chooses to be understanding and accept what you’ve said is up to them.
I believe once you’ve tried to educate someone, if they choose to ignore it then they are the one with the problem. It is not on you to continuously explain, justify or defend making choices that are vital to your health and well-being.
It is not on you if other people feel let down
The first few years of living with my chronic illness and saying no to people were plagued with guilt. Other people’s unfair expectations weighed heavy on me and it was miserable. Now a days I know that how other people feel about something, or respond to it, is not my responsibility. I am only responsible for how I feel and how I respond to situations.
I had a few friends who would guilt me if I cancelled plans or said no to something. They expected way too much from me and frankly they didn’t care if saying yes compromised my health. I soon realised friendships like that are toxic and draining. In the end I didn’t feel sad when those people drifted out of my life. I knew that I had nothing to feel guilty about as long as I had done my best. You cannot satisfy everyone and frankly it is not your job to make other people happy at great expense to your mental or physical health. You can only do your best and people will either accept that or they won’t.
It was a hard learning curve, and my friendship group is a lot smaller as a result, but those who remain are true friends. The people who stuck around are the ones who accept my new “normal” and have taken the time to learn about my illness. They understand how it impacts me and make allowances for that.
True friends will understand
They say that it is in hard times you learn who your true friends are, and I believe that is true. My true friends didn’t give me a hard time when my abilities changed. They always invite me to things, and don’t give me a hard time if I say no. More importantly they haven’t stopped inviting me to things, even if the likely answer is no.
My real friends find ways to include me in things, even if it means pushing me around somewhere in a wheelchair. My best friends pushed me around Manchester Christmas Markets when I was too ill to walk. They pushed me around Blackpool Pleasure beach and didn’t care that I couldn’t go on all the rides. They pushed me around Harry Potter World so we didn’t have to cancel plans. My real friends travel to see me because they understand I’m not always well enough to travel to see them. They accept that sometimes we go for long periods without seeing each other, and if I’m having a bad flare we may not speak for a little while. My real friends understand that my chronic illness doesn’t make me a bad friend, it just makes our friendship slightly different to what it used to be.
I have also made new friends since getting ill. Some of those have turned out to be toxic or unhealthy, and some have turned out to be real friendships. When I meet people who didn’t know me before I got ill, it is a different dynamic to friendships that existed pre-chronic illness. I find it easier to accept when new friendships don’t work out. However, new people are generally more accepting because they don’t have those pre-existing expectations.
Setting expectations
I often want to be involved with, or attend, something but I know my health will make it challenging. I counteract this by always setting expectations where I can. I let people know that my yes may turn into a no because the nature of my chronic illness is unpredictable. The fact is I may feel well enough to attend something right up until the day it’s happening. I have no control over when flare ups happen. I can plan well, rest for the days before and plan in rest days afterwards for recovery, but even the best laid plans can go wrong. I don’t feel guilty when my health means a yes has to be a no in the end because I know I did the best I could. Frankly it is disheartening enough to miss out on something I really wanted to do, without adding guilt to that.
Saying Yes
If I am well enough to do something, I generally plan what time I’m leaving and don’t push myself beyond what I know I can handle. I will often attend things and just not partake in all activities or take my wheelchair, or my own seat, if I know there’s a lot of walking or standing around. I plan and do what I can to accommodate my needs. Generally I always check if there will be accessible parking and toilets if attending an event at a set location. Small things like that make it easier to manage my health on the day.
If I’m doing something social with friends, such as a BBQ or gathering, they generally let me rest and don’t expect me to rush around being a hostess even if we are hosting the event. They make sure I know that I can go home at any time and only do what I feel able to. It’s so lovely to attend things like this with no unfair expectations and no potential guilt trips. Family are the same, they accept there are days I am not well enough to do things and offer support rather than judgement. These are the relationships I treasure and focus on, above people who try to make me feel guilty for things beyond my control.
Let people know if you’re struggling
Sometimes I’m not well enough to even respond to messages. When I’m having a really bad flare I will generally fire off a very short message as soon as I am able to, letting people know I’m struggling and will touch base when I can. It means people know I’m not ignoring them, but right now I must focus on my health. I’ve noticed most people are understanding when I do that, and at least they know what’s going on. It also means they can offer help and support if I need it. People aren’t mind readers, and if we don’t speak up they can’t predict how we are feeling. You don’t have to tell people when you’re struggling, it is a personal choice, but I find it has really helped me.
Letting go
My chronic illness has meant I’ve to let go of some relationships. It hasn’t always been easy, but I have made my peace with it. I am a great believer than things happen for a reason, and if a relationship can’t stand up in the face of hard times then it wasn’t a solid relationship to begin with.
I let go of feeling guilt when I realised I didn’t have to feel it. If something happens that is beyond my control, why should I beat myself up or be riddled with guilt? I am not responsible for other people; I can only be responsible for myself.
The best advice I can give you, when learning the art of saying no with a chronic illness, is to remember other people’s happiness, opinions and behaviour are not your responsibility. You are not responsible for other people’s emotions and actions; you are only responsible for yours. Therefore, you can choose not to feel guilt.
You don’t have anything to feel guilty for if your health fails. You can choose to understand that you are enough, just as you are. The day I realised I am not responsible for other people, but I am responsible for my own emotions was a powerful one. I realised I didn’t have to feel guilt because other people couldn’t accept that my best wasn’t enough for them. I could choose to let go and be kind to myself because I am enough just as I am. You are enough. Let go of guilt and give yourself permission to prioritise your health and to say “no”.
