Invisible illness: What (not) to say to someone with a chronic illness
I want to raise awareness for the many invisible illnesses that exist affecting a person's physical and mental health and their ability to participate in life activities. Here's everything you need to know about invisible illness, including tips for supporting a loved one who is struggling with chronic health problems.
These words come from a long-standing experience I've had with my own illness and my relationships with others. I've been really unwell recently, I've been sad and stressed and it's been difficult for those around me, they see my pain but they don't know what to do about it. And I don't know what to ask them for in terms of help or support.
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How did it look for me?
I had a couple of good days and participated in some activities that bought me joy, and now I'm exhausted, washed out and need a few days to rest.
My loved ones saw my engagement in activities and assumed that I could do that without struggling all of the time. 'You're in the house too much, that's your main problem, see how much better you feel when you get out? You just need to get out of the house more and you'll feel better.' If I had a dollar..
This is one of the things you should think about before saying to a person with a chronic disease. I would leave the house more if I wasn't exhausted, in pain, emotionally struggling and had the physical ability to engage in every activity that crosses my mind.
What makes this worse (for me, in my particular situation), is that I have ADHD and my brain is CONSTANTLY coming up with ideas for things I would like to do or activities I want to engage in. The problem is, my physical health doesn't allow me to do this without planning, prioritising and usually a large amount of reshuffling because the thing I booked in for a week ago when I was feeling good isn't possible today when I'm feeling bad.
How does it look in general?
Lots of people suffering from chronic illnesses suffer alone. They experience minimisation of their experiences and symptoms from others, and they gaslight themselves about their symptoms.
When the world is feeding you signals that you're overreacting, you start to internalise it and it can feel like your own thoughts and mind are not to be trusted.
Many patients live with invisible disabilities that impact their activities of daily living and their quality of life. And some patients are really good at painting a smile on because in the past their tears have been ignored, misinterpreted or misunderstood.
What is an invisible illness?
If you see someone with a broken bone, it's really easy to tell or conclude that the individual might have pain and might not be able to do everything that they would usually do. What about an illness that you can't see just by looking at someone? What are the impacts when this illness is not going to heal or go away like a broken bone would?
Invisible disabilities are those that do not manifest externally visible signs or symptoms. How common are they? Well, this is going to surprise you: 90% of those who have a disability, have a hidden or invisible illness causing this disability. Just because someone doesn't walk around with a service dog doesn't mean they are fully able-bodied.
5 types of invisible illnesses
This is not an exhaustive list by any means, but common invisible illnesses include autoimmune diseases, chronic pain disorders, mental health conditions, digestive disorders and the more well-known brand of unwell, diabetes and heart disease.
What is an autoimmune disorder? An autoimmune disorder occurs when your immune system gets confused, goes haywire and starts attacking your own tissues. Some examples of autoimmune conditions are rheumatoid arthritis, Crohn's disease, multiple sclerosis lupus and Sjogren's syndrome.
Chronic pain can be a disorder in its own right, when this occurs it's called a chronic primary pain syndrome (like fibromyalgia). Chronic pain can also be the result of living with chronic diseases which manifest physical changes in the body, we call these secondary pain syndromes (like endometriosis). You can't see either of these conditions, but the individual suffering from chronic pain might frequently have stabbing pain, neuropathic symptoms, cramps, muscle pain, headaches, or diffuse pain in multiple areas of the body.
Mental illness is probably one of the 'most invisible' categories, there's no simple blood test or brain scan to diagnose mental illness. You can't see depression, or the years of trauma feeding into it, on an X-ray.
Digestive disorders like irritable bowel syndrome can have a huge impact on a person's ability to function, but they probably look 'fine' from the outside. Don't make the mistake of thinking this condition is not impactful.
Diabetes and heart disease are the well-known, popular kids on the block. These conditions get a lot of attention in terms of medical research funding and disease awareness, but this can sometimes mean the individual suffering feels like their troubles are not worth talking about.
Challenges of living with an invisible illness
Invisible diseases cause a significant emotional challenge for patients and their caregivers. Even more so when the individual is diagnosed at a young age. It can feel like you're broken and defective (young people have their whole lives ahead of them, right? RIGHT?)
So what is someone experiencing when they have a hidden illness? It might be joint pain, nausea, headaches, brain fog, extreme fatigue, depression, health anxiety, shame, fear, or a sense of being broken, unfixable, or unloveable.
It can affect everything. Sick days from work, not being able to work at all, feeling like you're constantly disappointing others, feeling 'less than', intense grief for your missed potential, trouble socialising with friends, feeling like you should hide away so your negativity doesn't bring others down.
What else can't you see? Scars, medical appliances, some people would describe their body as 'disfigured' and you still might not have any idea from looking at them with their clothes on. They might avoid relationships or dating while looking like there's no good reason for them not to engage in life.
Chronic fatigue syndrome (CFS/ME)
Chronic fatigue syndrome used to be a catch-all phrase describing a lack of energy associated with illness, but in recent times we've learned that there is a distinct physiological process happening in patients who experience chronic fatigue. It's also known as myalgic encephalomyelitis (ME) and it's not something that improves by getting more rest. You go to sleep tired, you wake up tired and your symptoms likely worsen when you engage in mental or physical activity.
How can I support a loved one with a chronic illness?
Recognise that pain and fatigue are a standard part of their day. Compassion and empathy go a long way.
Accept that you can't fix the problem, but you can provide understanding and support. Listen more than you talk, and be ok sharing a silent space with them.
Become knowledgeable about the chronic illnesses affecting your loved one so you can speak to them on their level. What would you want to know if you had been diagnosed with this illness? How would you approach learning about this condition if it happened to you? Sometimes the best approach is to put yourself in that person's shoes and look at how the experience might feel from your own perspective. What would you do if a doctor told you that you were going to experience pain and fatigue for the rest of your life and there wasn't much you could do about it? How would you feel? What support would you want?
Be present when they need it, and give them space when that's what they need. People suffering from a chronic condition feel like their life is not their own. It can feel soul-crushing to have someone in your face when you need quiet time, as much as it can be soul-crushing to feel alone when you need a shoulder to cry on. If in doubt - ask what they need.
Try not to get frustrated with them. Yes, it's annoying that your plans were cancelled again. And yes, it's confusing that the person who was smiling at a joke yesterday is in a pit of despair today. But you're not making it better by getting angry at them for it.
Watch for warning signs of mental illnesses progressing into dangerous territory. This isn't always easy to see, people living with chronic conditions are frequently depressed and good at masking it, but making space for them to talk to you about how they are feeling can really help.
What NOT to say to someone with an invisible illness
This is the most important part of this post, I hope that now you have an understanding of what life is like for a patient living with invisible illnesses, you'll be able to read through this list and understand why these items are important.
You don't look sick.
It's all in your head, get out into the sunshine more and you'll feel better.
You need to go to bed earlier and get more rest, you're probably just tired.
You're enjoying yourself, you must be feeling alright then.
Have you tried meditation?
You've been on the couch all day, you'll feel better if you get up and do something.
You need to speak to a psychologist (while this one may be true, there are better ways to go about providing this support).
Takeaway: We don't need you to fix the problem. The problem can't be fixed. We need you to understand that and support us. Make room for us to step out from the shadows. If you're not sure what to say to someone, let them know that too.
What can the medical community do?
Healthcare professionals are essential to helping patients manage their illness. But some interactions with healthcare professionals are not always helpful.
So, the patient's blood work looks better. Great, good job. But have you asked said patient how they feel? Not just physically but also emotionally? What's the impact on their quality of life? Are they able to complete their basic daily activities or are they just not coping?
Is your bedside manner making space for that patient to tell you what's actually wrong? Did you get the full story in your patient assessment or did you skip over the parts that weren't directly related to your specialty? What does holistic care mean to you?
What's the takeaway?
Sometimes it's not just your illness that feels invisible, you feel invisible. Invisible illnesses are cruel beasts. They simmer, stir and rise often without obvious provocation. They can be unpredictable and difficult to subdue. They can come in many forms. Symptoms can be very vague, hard to describe or they can be very specific and blatant. It can be difficult for a sick person to have a normal gauge of what healthy feels like. They often deeply mistrust themselves, their bodies and their perceptions.
Their lives, and the lives of those around them, are frequently thrown off course. They're generally not just grieving for the loss of their health, they're also grieving for the opportunities they envisaged for their future lives or the experiences they missed out on in the past. When someone with a chronic disease 'isn't feeling well', it's not just the symptoms arising on that one specific day. They feel the lack of wellness compounded throughout their whole lives.