8 Helpful Ways to Be an Awesome Support to Your Loved Ones With Chronic Illness
Invisible illness is hard and when you’re diagnosed with one you are constantly fighting. But you also have to fight friends and family to convince them your illness exists — and so does your suffering. I have found people far more judgmental when you have an invisible illness in comparison to one you can see. People struggle to understand how you can be in so much pain but look fine and still be smiling on the outside. The answer to this is simple; we pretend we are fine for you, for those who don’t or can’t understand what we go through from one day to the next.
Everyone with a chronic illness will have been judged at some point through their journey, and sadly it is often those who are closest who judge you the most. This is especially true of those who have seen who you were before your illness. Because there is nothing visibly different, they often can’t accept there is anything wrong with you.
There are very few people who know what I battle with daily and what help I need to get by, from medications, doctors, family, caregivers and everyone in between. It’s not that I don’t want anyone to know what help I need, it is because I fear their judgment. After all, if someone doesn’t believe you have an illness, why would you need any help at all? People with invisible illnesses have constant struggles and fights with themselves and their bodies, and unless you have experienced this, it is hard to understand. However, just because you have never experienced it doesn’t mean you can’t be supportive and offer help. When you can’t understand why someone you know is constantly fatigued, just remember that they might fight to get out of bed, to be able to have a shower and get dressed each day, to carry out daily chores and run a home. On top of that, they fight to go out and look “normal.” Life can become exhausting very quickly, and that makes fighting each day even harder. Despite this, sometimes we fight to look “normal” for our friends’ and family’s benefit because we have been judged by so many that we fear that if we don’t look and act normally you might begin to judge us too.
So what can you do to help?
- Listen. Having a chronic illness is hard work — much like a full-time job, except you don’t get holidays. Dealing with everything that comes with a chronic illness can be tough; you have to learn to accept new limitations and accept that you are no longer the person you once were. Having someone to listen, even if it is just a general chat is incredibly comforting.
- Offer help. Many people find it difficult to ask for help. Instead, they suffer in silence. Maybe next time you are popping to the shop for something, you can ask your friend/family member if they need any milk or bread. It sounds simple, but it can make all the difference and its not only because you are getting an item they need — it is also the fact that you thought of them.
- Don’t make assumptions of what I can and can’t do. Often when you see someone struggling with something, you naturally want to help. It’s important to remember that sometimes not helping is actually helping. When you struggle with so many daily tasks and need help to do so many things, being able to do something for yourself, no matter how small, brings a sense of achievement. So please don’t just assume I can’t do something and do it for me. Just ask if I would like some help, and if I say I need it, then please go ahead.
- Ask us about our illness. When you see someone disabled, don’t ask them what is “wrong” with them straight away. It’s inconsiderate. However, as you get to know them, don’t be scared to ask about their condition. I would rather someone ask me than continue to wonder what was going on with me. I am open about my chronic illnesses and keen to educate those who don’t understand. Knowing someone cares enough to want to learn more and try and understand my condition is a wonderful feeling.
- Don’t tell me how to live my life or what will make me better. The key here is don’t tell me how to live my life. Every person is different, and that is true regardless of your health, so telling someone how to live their life is wrong and insensitive. I frequently hear comments like “You spend too much time in bed,” and “If you got out more your health would be better.” These sorts of comments make me feel bad about myself and that’s not helpful. I miss going out daily. I miss spending time with family and friends. I miss being able to go out and exercise daily. Having someone calling me out on things like this is like rubbing salt in an open wound.
- Don’t get angry with me. There will be times when I am too sick to go out, when I will have to cancel plans at the last minute — but please don’t be angry. I know it is frustrating, but living with a chronic illness can be like a rollercoaster and you never know if it is going to be a good day or a bad day until you wake up. Getting angry with me won’t mean I can do what you want. It’ll just upset me and likely make me feel even worse.
- Remember that I am doing my best. I am trying my best, to be my best self and live the life I want to live. However, this is sometimes difficult and that can become very frustrating. Please don’t make out that I need to do more to make my life better.
- Quite simply, accept us for who we are. People’s lives are constantly changing due to their condition(s), and knowing there is even one person in their life who won’t judge and will accept them regardless of whether they have been able to have a shower, whether they take medication or have other treatments you may not understand, will mean more than anything.
And always remember this: we are doing our best, and that should be enough.