When it comes to chronic health conditions and the intricacies of living with them, there’s sadly still so much in the way of stigma, lack of understanding and inaccurate assumptions, whether it’s from society, family, friends, governments or medical professionals. Here’s a look at just 15 facts about living with chronic illness that could help to raise awareness and dispel judgement, while hopefully also helping those living with chronic conditions to feel a little less alone in their experience.
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15 Facts About Living With Chronic Illness You Should Know
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1. “Feel Better Soon!”
Chronic conditions are just that. Chronic. They’re not short term temporary issues and there’s no getting better soon, maybe not even ever. All we can do is manage the symptoms and deal as best we can.
2. There’s No Magic Solution
As well intentioned as some unwelcome advice may be, unfortunately there’s not enough kale, yoga or herbs that will cure us of our woes. Most individuals with chronic conditions will have already tried a million things already with no luck. It can be helpful on some occasions, where there is experience of some kind to back it up, to recommend suggestions for specific symptoms. However, the basic advice for general health is usually a tad on the offensive side rather than helpful.
3. We Don’t Want To Be Sick
As shocking as it may be, we don’t want to be sick. Nobody does! Well, maybe there are such people in the world but they’ll be very few and very far between. Some people were born with disabilities and health problems, and never had the chance to have a life without them. Some of us developed them and had a life before the problems began, desperate but unable to get that life back.
Chronic illness, pain, fatigue or other disability can have a huge impact every area of someone’s life, from work and relationships, to the day to day practicalities and mental health. We don’t want to have to deal with the problems, we don’t want to spend a fortune on medical products, we don’t want to keep going to doctors and specialists just to be fobbed off. We don’t want to feel so unwell or be in eye-watering pain.
If someone cites chronic conditions as a reason for not doing something or for why their life is the way it is, it’s not an excuse. It’s a legitimate reason because chronic conditions change lives and the things we can or cannot do likewise change. We didn’t ask for this and we certainly don’t want it, but we have to manage the hand we’re dealt.
4. Conditions Don’t Take Holidays
While there are some conditions and symptoms that can flare or even go into remission for some time, most chronic conditions are a permanent, constant feature in someone’s life. This has a two-prong effect: It wears you down and can drive you up the wall with frustration and agony, and it can also make planning both necessary and impossible. I live with pain every single second of every day, the most debilitating of it due to surgical-related nerve damage. It never magically stops for a while to give me a breather. It’s exhausting.
When living with chronic illness, you can only learn to manage the best and come to terms with how it could pose hurdles on any given day. Not everyone will understand why you can’t plan activities in your day or you can’t commit to events in future, and this is how some relationships can be lost and individuals can become more withdrawn. When it comes to illness, I always feel like hell, but some days are just worse than others. When there are things we need to do or appointments we have to attend, we can’t suddenly be well for them. We have to push ourselves to do things regardless. Sometimes it’s possible, sometimes it’s not. As a result, best laid plans are oft made to be broken with chronic conditions. If we try to do something ‘nice’ for a change, we can feel guilty or like we’ll be judged for that brief enjoyment, even though it always comes with a cost.
5. Payback Is Real
For those with fatigue and pain, payback can be a real kick in the nether regions. If you’ve had to force yourself to do something mundane and routine like the grocery shopping, you pay the price. If you force yourself to do something different and enjoyable for a rare change, you pay the price. The day after, or even several days after, can be like trudging through mud, spent dealing with exhaustion, flared up symptoms like migraines and crippling pain. I’ve come to find that some payback is worth it. It’s worth it when you’ve been able to do something fun, to spend time with family, to make memories. But that payback is real and it can be mighty off-putting having to factor it in to anything you do. Weighing it up means that sometimes, it’s not worth it.
6. No One Condition Affects Every Person The Same
If you tell someone you have fibromyalgia, they can sometimes assume your experience and your symptoms will be virtually the same as the next person with fibromyalgia. It’s just not true. There are varying degrees of severity for most illnesses, just as there can be varying types of symptoms. The way they affect you, as well as how you respond to them, is unique to each individual. Unique variables like your pain and sickness tolerance level, and any potential comorbid conditions you live with will further complicate the experience. As can be the case case, an individual with one chronic condition is often greedy and will have several chronic conditions to contend with.
7. Your Experience Is Unique
Following from the reality that conditions can vary between people is the reality that our experiences are also uniquely our own. Your mental health, your history, your support systems or lack thereof, your financial situation, your personality, your perspective. All of it impacts how you respond to living with a chronic illness or other condition. It’s a complex, multifaceted picture and it means that you can never compare your experience with that of someone else. It’s your unique journey and there’s no right or wrong way to deal with it. You deal the way you deal.
8. Positivity Isn’t Always The Bees Knees
Being positive can certainly be helpful for our outlook and resiliency, with knock-on benefits to our physical state. But not everyone is naturally positive, and very few people living with chronic conditions want to be bombarded with requests to stay positive. There’s a point where the push for positivity becomes toxic and harmful rather than encouraging. Toxic positivity can negate and undervalue the person’s experience, put undue pressure on them and create increasing negativity. Being supported in changing our perspective is more appropriate but sometimes, we need time to accept that things aren’t dandy. It’s okay to admit that you’re struggling. It’s okay to admit that right now everything is just a bit shit. It’s okay to feel however you feel, even if it’s not positive or popular because you feel miserable. You can’t simply push away those feelings and deny the reality of the situation. Feel it, express it, accept it.
9. You Can’t Always See Disability & Illness
Some conditions are invisible. You may get some inclination of issues, like a limp, scrunched eyebrows, slow walking, holding the head, touching the tummy. But otherwise you’d probably never know that someone lives with chronic migraines, IBS, chronic fatigue, fibromyalgia, a rare disease. While individuals may use assistive aids like walking sticks and wheelchairs, not all do, or at least not all of the time. Just because someone uses a wheelchair one day and not the next (an ambulatory user) does not mean they’re not disabled or don’t have a genuine need for the wheelchair.
Some so-called invisible illnesses or hidden disabilities may be hard to believe because you can look at someone and think they look fine and well, or even really good! But looks can be incredibly deceiving. Many individuals with chronic conditions have trained themselves to deceive by pretending they’re okay when they’re not because it’s the only way to keep on surviving. Of course you never know what someone else is going through in general anyway, so a little kindness never goes amiss. While there will always sadly be those who take advantage, there are more honest people in the world than not. So before judging someone going to the disabled toilet or asking to take a seat on the bus because they look fine, remember that there may be more than meets the eye.
Living with a chronic illness that cannot be “seen”, like living with chronic pain, can be really difficult. You can face a lot of judgement and assumptions that makes you question yourself, you can start to feel like a fraud or you can feel frustrated at nobody “getting it” or even noticing the pain you’re going through. Trust yourself always and please know that others with such conditions “get it”, you’re not alone. We see you. I see you and I see your pain.
10. Being Fobbed Off By Doctors Can Be A Regular Experience
Have you seen a doctor about that? Don’t make me laugh.
If you can ever see or speak to a doctor these days, the next problem is whether they’re going to: a.) Take you seriously and believe you, b.) Give a damn about you, c.) Know what the hell they’re talking about or be willing to learn. Many individuals, with or without chronic conditions, have had negative experiences in this regard and at best, it leaves the patient disheartened and their symptoms continue without help. At worse, the symptoms get worse, the patient is permanently affected by it, or to the extreme, they may even die. There’s a lot of in-the-box thinking, ignorance and assumption-making, rigid adherence to guidelines, and time pressure are some factors that contribute to the likelihood of a patient being fobbed off.
Then come negative experiences generally. It could be due to problems at the pharmacy and with prescriptions, problems with NICE guidelines or local CCG guidance within the NHS, long wait lists, nasty nurses or cowboy surgeons. Negative experiences and being routinely brushed off can be hugely damaging, both mentally and physically. After years of such treatment, some patients have come to realise that seeking help is a fool’s errand and they’re unlikely to seek further help in future, or at least be very cautious and sceptical to do so.
11. Living With Chronic Illness Can Be Expensive
While some people may get their prescriptions free or may be able to cut costs on parking with a disability Blue Badge, there are often various expenses involved when living with chronic conditions. And oh boy, can the chronic illness life be expensive! One-off costs of products can add up, as can regularly purchased items. Not everything is covered with benefits or allowances.
A couple of examples of what I have or continue to pay for include: Various chewable or liquid supplements that are pricier than standard pills but I need due to my stoma, private physiotherapy, walking sticks, different clothes due to weight loss and different trousers due to a stoma bag, nail strengtheners, hair thinning products, blood tests, private surgical consult and surgery, heat pads, ice packs, private injections, new mattress for fibromyalgia and pain, travel costs to appointments, migraine ice wraps, travel costs into town as I can no longer walk there or back, bedding and clothing replacements due to stoma leaks, pain gels, a lot of junk foods that are pricier than the healthy diet I used to be able to eat, eye cleansers/wipes/eye drops for Sjogren’s dry eyes, orthopaedic support pillows, etc etc. And I’m sure plenty of people have to get far more products and services than I do.
The benefits a person with a chronic condition may get are not guaranteed and not everyone gets the same. For some, it may not be enough to cover the basics. I can’t figure out how some in the news get so much because that’s certainly not the reality most poorly or disabled individuals face. There’s a potentially huge loss of income from losing work and careers, and often a related loss of self-worth that comes with it.
12. We Can’t Always Work But We’re Not Worthless
For those who find themselves out of work because of their chronic condition, please know that your worth is not tied to your earning potential, even if it feels like it is. Some people have never worked due to disability and for some, it may seem more obvious that they can’t work. For others, especially those who “look fine”, judgement is quick; you look like you should be able to work, so why don’t you? It’s not always that simple. You might feel like hell and lose a lot of your life being too poorly to get the basics done, which is a vicious cycle I find myself in.
I lost the job I loved due to ongoing surgeries and declining health. I lost my chance at becoming a Clinical Psychologist because of ongoing ill health. It hurts, and it’s not something I’ve come to accept. I’ve tried going self-employed and felt like a failure when, two years later, I shamefully admitted I couldn’t do it anymore.
Our society puts a lot of weight on jobs and careers, and jobs can take up a large portion of our waking lives. Without work, it is as if you’re not contributing to society and you’re consequently open to judgement if you receive benefits. Of course, those who obtain benefits when they could work, but who just chose not to because they can’t be bothered, have created a hideous stigma around sickness and disability benefits.
In reality, many decent people who are truly unable to work, for whatever reason, have twisted themselves inside out over benefits, having to apply, having to accept being on them. They can feel ashamed and embarrassed even when they shouldn’t, especially when it’s not their fault and that’s exactly what the system is there for in the first place. But each person is valuable, irrespective of what financial contributions they make or what their level is in the career food chain. They can change the world in their own small way, they can make life a little better for those that know them, or they can simply live in this world and survive without harming others. Your value, your worth, is innate and cannot be tied to your successes, employment or financial standing.
13. It Can Take A Toll On Mental Health
The brain and body are intimately connected and one can impact the other, but often individuals living with a chronic illness can experience a knock-on effect to their mental health. It may be that a person had a mental health issue to begin with and their physical health made that worse, or it could be a new issue altogether. The impact to mental health can vary in symptoms and severity, from a slight impact to a life-changing impact.
The likes of anxiety and depression are quite common because life with illness, disability and/or pain can bring up a tumultuous mix of emotions, leaving you feeling disheartened, angry, lonely, frustrated, all at the same time. It can take a toll on your self-esteem and confidence. It can make you utterly exhausted and fed up. It can leave you in a cycle of exhaustion, anxiety, guilt, resentment and anger that keeps repeating over and over again, and it wears you down a little more each time.
Don’t underestimate the power of physical health and everything that entails within your life, like your work or relationships, to impact your mental wellbeing. There may be ways to relieve some stress or to make yourself feel brighter, such as by prioritising self-care, building in small joys to your day, finding a way to express yourself creatively. Or you may need to speak to someone, like a friend, family member or someone online who ‘gets’ a little of what you’re going through. Some people may benefit from medications. If you have concerns, please speak to a confidential charity or your doctor.
14. Living With Chronic Illness Can Be Lonely
Even if a person has a supportive family, partner or friends, life with a chronic condition can still be lonely. Some people don’t really have any support to speak of, and this is why the online world is so important to connect such people. You can feel that nobody really “gets it”, that you’re judged, that you’re treated differently. You can feel that you’re a burden or that you’re unlovable. It doesn’t matter if none of it is in the slightest bit true if you feel it yourself. Friends and partners can also be lost over the course of dealing with health problems because of all the experience entails, further underlining the feeling of loneliness. Sometimes just knowing someone is there, without judgement, can mean the world. To have someone in your corner, someone who sees you for you, beyond the diagnoses.
15. Guilt Can Be A Kicker
Guilt can be pervasive and sneak up on you at any opportunity. It can sit on your shoulder and berate you. For some reason, many individuals living with chronic illness also live with a lot of unwarranted guilt. Guilt for being sick, for being “a burden”, for not working, for not being a better friend, for not getting enough done. Guilt can even come knocking when you smile, when you feel a moment of happiness, when you spend money on yourself, when you feel like a fraud. It’s hard to deal with guilt because this sort of guilt – borne from no reality and with no need to be apologetic because you’ve done nothing ‘wrong’ – has no justifiable basis.
It’s a case of acknowledging it’s there, why it’s there and finding ways to move forwards with just a little less of it sat on your shoulders as time goes on. I’ve struggled a lot with guilt that sprung up when I got sick and I couldn’t be a bigger hypocrite if I said it’s easy to ignore. It’s not. It’s not easy at all. I still can’t get past it and I’m not sure I ever will at this point, but I can know acknowledge just how bad the problem is for me.
Carrying all of it all the time is exhausting and it can break you apart bit by bit. Realising the guilt has no basis in reality and there’s no need for it is the first step, but it takes time to then rebuild your self-worth and self-confidence in order to move forward with less guilt. Give yourself the time and kindness you need to work through the feelings and consider how you’d speak to a friend, what you’d say to them if they told you they struggle with guilt.
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Related Reading :
- Chronic Pain & Mental Health : 5 Detrimental Effects
- Criticised As A Chronic Illness Blogger Not Showing Enough Sickness
- 4 Things To Remember When Pacing For Chronic Illness, Pain or Disability
- How The Small Joys Become Big Things With Chronic Illness
- Chronic Illness & Depression : 8 Trigger Points
- Pain, Fog & Fatigue : The Reality Of Fibromyalgia Symptoms
- 10 Ways To Deal With Overload & Stress
This isn’t an exhaustive list. There are so many issues that can affect someone living with a chronic illness, pain or other disability that it’s just not possible to write it all. Do you relate with any of these points, or is there something else you’d like others to know?
Caz ♥
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21 comments
I hear you. I know many suffer from chronic illnesses. I wish I could wave a magic wand and everyone around the world would be well.
Have a fabulous day and rest of the week, Caz. Big hug. ♥
Yes people are better at dealing with illness on a scale they understand and as you say, especially if getting better is the outcome. An operation, chemo, resting with Covid and then you will be back to normal.
Thank you,. I hear you and am sending the best wishes that you have more good days than bad…
I think it’s great that you try to educate the world on what it’s like to have a chronic illness, I truly envy your determination. I’m gonna share and repost this ( once I figure out how) I had to to a break from educating everyone, and tried to focus on the intention behind the comments. For example, I am not religious and most people who are close to me know that, yet whenever things are especially tough, people keep saying I will pray for you. It used to piss me off for so many reasons and I would roll my eyes. Now, I try to focus on the fact that they are trying to show me that they care in a way that they know how. That feels much better. I hope you are doing the best you can be my friend
I feel every one of thee points! People just don’t understand chronic illness, doctors especially GPs these days! I can’t even get into a diabetic clinic for the last few years since moving because my GP won’t refer me, even though as a type one with bad control, I should automatically be seen by more prefessional doctors. And it’s so lonely and you’re made to feel embarassed to have to ask for help in any way when ill.
Excellent messge. Thank you for sharing.
You Nailed down well the challenge and truth of chronic illness Caz!💞
So much substance and valuable insights here, Caz! You may not have become a clinical psychologist, but you’re doing a world of good with thoughtful pieces like these. Now if you can just take your own advice where applicable (learn peaceful coexistence with guilt, for example), that would be wonderful!!
Annie xxxx
First of all, thank you very much for this great contribution! I don’t tend to exaggerate, but your article is absolutely special, helps and gives a lot of strength! It’s one of those articles that should be pushed into the hands of everyone: the chronically ill, as well as those around them. They often have no idea how difficult it can be for a person affected to make ends meet some days. For me it has led to the fact that I have largely socially isolated myself.
However, on one point, the positive perspective, I have found that my life has become much more pleasant since I have been able to see something positive in everything. And yes, it usually makes no sense to see a doctor. And, yes, being chronically ill is an expensive pleasure. Thanks again!
Yes to every one of those. I really don’t think people appreciate everything that comes along with living with a chronic health condition. The financial part for you is incredible due to your stoma. It’s ridiculous that you have to pay for so much that should automatically be available to you.
It’s difficult to accept losing big things like a career due to your health, isn’t it? Acceptance is a long tough journey that we often have to make over and over. And you’re right, society, MPs and the media put so much weight on money, careers, jobs and education. No wonder so many of us feel worthless at times. We need to work at accepting ourselves and recognising our self-worth. And you, my lovely friend, are very worthy. I hope you remember that.
Brilliant post, Caz.
A lot of big and important points! The financial ones are especially salient here in the U.S. where a chronic condition (or even an acute one) that leaves you unable to work can easily lead to bankruptcy from medical bills. I was fortunate enough to escape “The Event” more or less in one piece, but I see many, many people in the same situation who have real, serious, and permanent issues like these, even though they may superficially appear to be fine. 🙁
Charlee: “We don’t have much to add except for purrs!”
Lulu: “And tail wags!”
Chaplin: “That’s nice Lulu but everyone knows purrs are the best medicine.”
Java Bean: “¿Y por qué es eso?”
Chaplin: “How often do you see a human sitting in a chair for hours petting a tail-wagging dog, as opposed to petting a purring cat?”
Lulu: “Well …”
Charlee: “Quod erat demonstrandum, Lulu.”
Oona: “OOH, YOU SPEAK FRENCH!!!”
My heart goes out to you, Caz. I’m sorry for the cross you and others with chronic illnesses have to bear. However, I’m impressed at how clearly you’re able to express your thoughts while you’re battling constant pain.. I’m impressed at how much you are doing to help others while trying not to succumb to doing nothing because you are so miserable. I’m totally impressed by your resolve to move beyond your feelings of guilt. Thank you for a blood, sweat, and tears blog post, Caz. You’re a very special person.
Thanks for helping to educate us about what it means to live with a chronic illness. I’m so sorry you have to go through this….You deserve so much better!
Never worthless!!!! Hate that anyone would feel like they were worthless because of an illness, breaks my heart. My sister has suffered from a chronic illness my entire life and you have touched on points that are all so REAL!!!
These are all excellent, Caz! The kind of reminders we need to hear again and again. #3 particularly resonated with me today – I get so frustrated when people say to me “I would love to only work part-time.” It takes so much effort and energy for me to work part-time. I would love to be able to work full-time because that would mean I was also well enough to live all of the other aspects of life. People don’t seem to realize that what we want more than anything is to be ordinary functioning members of society.
All of these are oh so true! My office manager recently complained to me “But you don’t WANT to work full time” (I work 3 days a week). It took all of the very little energy that I have not to launch into a rant about it not being about wanting or not wanting to but actually being about not being able to!
Living with a chronic disease is very debilitating in all senses: physically, mentally, financially, emotionally…. and the list goes on. Everyone should be aware how hard it is to live with chronic pain, but sadly not many understand. Thank you so much Caz for raising awareness with this brilliant post.
And also, “You look so good.”
Caz,
There is no way for me to fully understand your experience. I hear you. I see your work to educate and advocate for others. Thank you for sharing your experience. Sending you a virtual hug.
Thanks for pointing these out and saying them out loud. So many people without issues just don’t understand and don’t know the facts, Hopefully, this posts like this help get the facts out there.