It can be challenging to know what to say when someone is sick with a chronic illness. When you care about someone, it can be hard to put yourself in someone else’s shoes in understanding what their experiencing and how they are feeling. We want to feel understood and you want to show us you care. Here are a few suggestions of thing you can do and say to someone with a chronic illness.
What To Say When Someone Is Sick With a Chronic Illness
“I’m here to listen.”
It seems so simple, but one of the best things you can say is that you are just ear to listen and shoulder to cry on. It is comforting to know that we have a support network of friends and family who truly care about us.
Some days are much harder than others and even though you may not be able to see us struggling, it is nice to express to someone who cares some of the hardships we go through.
“I’m headed to the grocery store tomorrow. Send me a list of some things you need.”
Sometimes helping us means helping us with some house chores. Instead of simply asking if someone needs help with something, just take the initiative to do so.
When you ask if we may need anything, it is easy for some of us to deny the help out of not feeling like a burden. Being direct can help you help us. 🙂
“Do you want me to come with you to your appointment?”
It’s nice when we know you are making an effort to comfort us and to understand our illness. Offering to go to our appointments shows us you care.
Plus, sometimes we are going through a procedure or receiving test results. It is nice to have someone there to emotionally support you – or even drive you home when you physically can’t.
“I don’t know what to say, but I care.”
Sometimes that is just the truth and that’s okay. We don’t expect you to be perfect with the right thing to say. Sometimes the best think is knowing you care.
“What did you think about that last episode of [fill in the blank]?”
When you don’t know what to say, sometimes a switch of topics is a nice change of pace. We are often asked about our illness by most people. They want us to update us with how we are feeling, what is improving. Sometimes things are not improving and we just don’t want to talk about our health anymore.
It can be nice to talk about things we enjoy, like the news, celebrities, trending products, movies, books, etc.
Chronic Illness Bloggers Tips
A little advice can go a long way. Through their experiences, here are a few more suggests made by other chronic illness bloggers.
Firstly, recognize their illness as it is – for them – and understand that what they can do on 1 day probably won’t be the same as the next. Also, and importantly, support without judgement – we judge ourselves more than enough thank you…
…Keep things simple – to the point – no guess work – show initiative
You could say;
I have no doubt that you are struggling with your symptoms and can see /or have heard how irregular and intense they can be, do you;
“Need anything while I’m doing my own shopping.”
“Mind if I chuck the hoover around or/and wash up while I’m here.”
“Want a coffee? Let me make it.”
Small gestures can go along way when you are trying to support someone with a chronic illness, but you are more likely to get accepted on your offer of help if it is made in a way that she/he is not being a burden to you.
If you are unable to offer help then of course that’s fine too – we don’t expect you to give up your time and energy for us – we get how precious those are.
Other ways to help
This was already said, but its quite a biggie – Don’t be judgmental of your family member or friend – believe that they actually have an illness – there may not be tests to prove conclusively what is causing the symptoms, that just means science hasn’t got that far yet.
Be aware and involved in any pacing or tracking systems that they may be using in regards to pain/energy levels – I designed a few printable’ to enable a clearer view for family’ involvement;
Be patient with each other guys, accepting and managing CFS/ME symptoms is a steep learning curve for all involved, but it is a lot better to manage if the support is there.
Offer the person reassurance that you will be there for them. ‘Being there’ could mean offering a shoulder to cry on, providing a listening ear, or distracting them with chit-chat. It could also mean supporting them at doctors appointments, making meals or picking up groceries.
“I’m here for you,” are easy words to say, but they need to be sincere and meaningful.
“Just asking if there’s anything I can do to help,” sounds kind, however, the person might not ask. Many people don’t like to ask for help. They’re too proud, believe they’re a burden or feel guilty asking.
So make a direct offer of help instead. Say something like “I’ve made a casserole. I can bring it round later.”
Or, “I’m going to the supermarket. Give me a shopping list and I’ll drop everything off on my way home.”
Direct offers are easier for people to accept.
When I was struggling with chronic fatigue, it was frustrating to have to cancel plans. My spirit was willing and excited, but my energy level didn’t always cooperate. As a result, I was often reluctant to make plans because I knew there was a good chance I would have to cancel.
As a friend and loved one, it’s important to be understanding when this happens. One workaround is to include a Plan B when you are making plans. For example, if you want to meet up for coffee or go see a movie, and I don’t have the energy to go out, Plan B could be for you to come over to my home with coffee or bring popcorn to watch a movie here. That way we can still see each other, and I don’t feel like I’m ruining our plans, but instead, get to enjoy your great company.
Don’t just ask how you can help your chronically ill friend. This can be so overwhelming to a chronically ill person to narrow it down to just one task that they think you might do for them. And usually we just want to fit in and act like a person without a chronic illness as much as we can. It can be hard to ask for help when you are trying to seem ‘normal’.
Instead ask them about their illness and how it affects them. Get to know the symptoms they specifically have, as some illnesses have lists of wildly varying symptoms and your friend may not be affected by all of them. The best help I can remember on my journey with multiple sclerosis was my teaching colleagues learning how badly heat affected my body with fatigue. And on particularly hot days at work where they could see I was affected by the heat, they would arrange for my playground duty to be covered by someone else, as they knew I would feel even worse if I was outside for that period of time. That small action meant so much to me.
There’s a few tips that I could share with those who have loved ones or friends with chronic illness. Please believe them, it truly is a horrific amount of suffering.
Try to educate yourself as much as you can about the illness. I think knowledge brings about wisdom and understanding. If you understand the illness, you will better know how to talk and respond to your loved one who is suffering with this. I promise, we are not lazy and in fact we would give almost anything to go back to work and be able to function. We are not just laying out of church or skipping out on our responsibilities, in fact it’s actually an extra form of suffering for us not to be a part of worship and fellowship with God’s people.
If we feel like we have to defend ourselves because of lack of understanding, this only adds to our suffering. I think if you educate yourself with knowledge about the illness, it will empower and equip you to better understand someone with chronic illness. You will then know the right words to say to your loved one in their suffering. Your understanding would mean more than anything you could do for them.
What NOT to say to someone who is sick with a chronic illness:
Now that we have covered some wonderful thing to say to someone who is sick with a chronic illness, Ill cover some things that are not helpful to hear from others. From personal experience and what other’s have expressed, here are 3 statements that we have not found helpful when being comforted about our chronic illness.
“Maybe you’re just depressed” or “It’s just all in your head”
What boils the blood of many is when you question our physical illness and compare it to our mental status. Some people don’t believe we are sick due to not being able to “SEE” the illness, from a lack of knowledge and understanding, and because our doctors may have not diagnosed or are able to determine a biomarker yet. Keep in mind that not all doctors are made equal and some of us may still be on a search for answers. This does not mean it is all in your head.
The unfortunate truth is that some illnesses like Chronic fatigue syndrome or Fibromyalgia do not have biomarkers but are still diagnosed by physicians. Due to the lack of research and available information on certain diseases, some people feel the illness of others are psychosomatic. When you are going through this process, even your friends and family may believe that it is all in your head. Having this lack of support can have us spiraling.
Granted, some of us may experience depression as byproduct of our psychical illness. It is very frustrating when you either: 1. Are still undiagnosed 2. Frustrated with finding the right care 3. Are diagnosed, but don’t have satisfactory treatment 4. Coping with the fact this this is something you’ll have to live with forever. – Anyone in that scenario is going to feel mentally drained and will hit a mental drop, but this does not mean that our physical illness derives from our mood.
When we hear “maybe you’re just depressed” it makes us feel dismissed; swept under the rug. I’ve heard this from doctors, family, and friends before I was diagnosed with ME/CFS, Dysautonomia, and Small Fiber Polyneuropathy. During this time, my mood did go up and down due the my health progressively decreasing and the continuously running into dead ends from doctors. When no one seems to believe you or want to help you, you can start to feel helpless. The one thing I did know and STRESSED to my doctor, was that my psychical ailments were not due to depression.
I finally found the right doctor who validated my experience and found physical biomarkers. Just remember that just because you do not understand what someone is experiencing, it does not mean it is all in their head.
Also know that there are illness out there that have not had the proper amount of research done on them and that many doctors are not always up to date. We could have an illness that is just not diagnoseable yet. Did you know that before they were able to find a biomarker for MS that they told these patients that it was just hysteria? Multiple sclerosis is a neurodegenerative disease where the immune system destroys its own cells. A majority of patients with MS lose mobility and before they knew what MS was, they were telling patients that their illness was all in their head. Just imagine losing the ability to walk and people were telling you it was all in your head. – You’d feel pretty frustrated.
Although it is important to address and manage proper mental health, nobody wants to feel that what they are experiencing should be dismissed and accused for due to someones positive or negative mindset.
“You look fine.”
Fortunately, many people with chronic illness look well on the outside, but this is not to say we should judge a book by its cover. Illness comes in all shapes and sizes and sometimes they are not visible. Just consider this, how can you tell if someone has a migraine or back pain, other than them telling you?
For many of us, what ails is includes symptoms like fatigue, brain fog, migraines, pain, indigestion, dizziness, muscle weakness, etc. Most chronic illnesses are considered an “invisible illness” because we look okay from an outside perspective. It is stigmatized that illness should look a certain way. After becoming chronically ill myself, I have learned that illness is not always that apparent.
Keep in mind that we are very strong people. Although we may be experiencing these symptoms, we may not express the severity of them to you while you are with us out of politeness. If I am having lunch with a friend for a few hours, I may experience dizziness even while sitting down, I am fatigued, I might have a hard time comprehending the conversation like I use to and have a hard time finding words. I may even feel pain in my arms in legs just sitting there and you would never know. Symptoms often exacerbate as I spend more time with you, but I am polite about the time I am spending with you since I may not see you that often. What you may not realize is that I have triggered a flare up and will be going straight to bed after we say goodbye.
For the short period of time you do spend with us, we may look okay, but what you do not see is how unwell when we are apart. What you may not see is us laying in a bed for hours or days after we have triggered a flare up. You do not see us ordering take out instead of cooking our own meals because we have no energy to make a healthy dish. You do not see the days we skip showers, the days were the laundry piles up, when we’re having trouble opening a pill bottle, or just crying from feeling defeated that day.
Although we often look well and can fake looking even better, it does not mean we feel physically well on the inside.
Don’t comment on how a chronically ill a person looks. A lot of chronic illnesses are invisible or well-hidden. I know I’m not the only chronically ill person who’s fed up of hearing “But you don’t look sick” and “You look so much better”!
“At least it’s not cancer.”
Yes, we are fortunate that our illness is not terminal, but this is an illness we will have to manage for the rest of our lives. Unfortunately with chronic illness, there are no cures, just treatments that help us manage our symptoms. Depending on ones illness, there are better treatments than others that manage our symptoms. What is very frustrating to hear is “at least it’s not cancer.” We know that when people say this, that they are just trying to look on the “bright side” and highlight that we will not die from our illness, but what it really feels like is a competition and that you are not validating the experience of our illness.
Every illness is unique in it’s own way and can add a lot of suffering to ones life. By saying “at least it’s not cancer” invalidates what our illness is and what we may be experiencing. We don’t want to view our illness as a comparison to another one. This is not fair to us or anyone else with a different illness. We do want to be validated that what we are experiencing is a hardship for us.
If you are looking to be positive with someone with a chronic illness, a great way to do this is by acknowledging their diagnoses as unique illness that does not compare to others and to acknowledge the amazing things they DO have in their life.
Here is what others with chronic illness feel when they hear “At least it’s not cancer”:
“Cancer is horrible. And terrifying. But many types of cancer can be cured. My CHRONIC illness never will be. That’s an important distinction.”
“At least it’s not cancer- this is the worst thing you can say to someone diagnosed with a chronic illness. We know that it’s not cancer and we know that there are people who are going through much harder experience but my pain is my pain and I’m gone grief for the things that I’ve lost, for things that I can’t do anymore my own way.”
“I hate that too, it’s such an insensitive thing to say. It’s not a who has it worse competition, and it’s a hard thing to even try and quantify. I like the saying “the good news is my chronic illness won’t kill me, the bad news is my chronic illnesses won’t kill me”.”
I hope this article was helpful to anyone who is looking to know what to say to someone who is sick with a chronic illness.
If you are someone with a chronic illness, please share any other tips that you have found helpful. What are some comments that you have found unhelpful?
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