13 Reasons Why Coping with Chronic Illness is Hard
chronic illness

13 Reasons Why Coping with Chronic Illness is Hard

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When you are sick with an illness like the flu, you recognize that you will get well within a short period of time. If you are diagnosed with a Chronic Illness, on the other hand, the reality is quite different. A Chronic Illness will never go away and the symptoms can make coping very difficult.

Here is why coping with Chronic Illness is hard:

1. Symptoms are invisible to others

Because of this many people are not able to grasp the severity of the illness. Some may even doubt the sickness altogether. Living with an invisible illness makes you feel like you living in a bubble. This creates an life that is very isolating

2. Inability to make and keep a schedule

Often times, friends, family and employers are unforgiving when sickness keeps you from activities. This can cause strain on relationships and also cause job loss. Many people with Chronic Illness are no longer invited to events and this continues to add to the isolation created by illness.

3. Feeling like you have to act “ok” even if you are not

Let’s face it, people ask how you are out of habit or general politeness. It doesn’t mean that they really want to know the truth. I have made the mistake of answering the question with the truth and watched as people made a quick escape. So, most people with Chronic Illness will put on a happy face even though that also sends ridicule their way.

4. Side effects of medications may be severe

Medications can make you gain or lose weight, cause hair to fall out, decrease libido, cause nausea and the list goes on and on. On top of managing symptoms, it is also necessary to manage side effects. I have taken medications that had side effects that were worse than my original symptoms. In that case, managing side effects becomes a huge part of life.

5. Managing an illness may require major lifestyle changes

Most Chronic Illnesses are helped by special diets such as gluten free, nitrate free, sugar free diets, for example. Making these changes can be discouraging because so many other things in life are being taken away as well. Making huge changes in diet and activity while also dealing with the destruction Chronic Illness can bring many frustrations.

6. Having to give up activities you enjoy

Being sick is exhausting and as you body uses energy to battle the illness it becomes harder to do all of the things you enjoy. Because there are things that you must do, hobbies and social activities are often set aside.

7. Loved ones must become caregivers

Of course, spouses take care of each other when needed. When one has a Chronic Illness, the other becomes the caregiver. Because the illness is long term, it can put a strain on relationships unless you both work together to ensure both are doing ok.

8. Knowing a good day may not stay good

Symptoms seem to choose the most inconvenient times to show themselves. This means that even on good days we worry about how long until all heck breaks loose. Coping with Chronic Illness on good days can be just as difficult as bad days because of the fear about when symptoms may return.


9. Feeling guilty for a sickness you have no control over

Sometimes, Chronic Illnesses are not effectively brought under control with medications, diet or therapies. Although you are doing all that you can, your illness may not be managed that well. When this happens, as it is in my case, it is easy to let discouragement and frustration to lead to guilty feelings.

10. Being or feeling isolated from the outside world

It is hard to watch the world go by from the sidelines. Knowing the world around you is continuing to revolve while you are sick makes you realize all that you are missing. The isolation can easily lead to depression which is why Chronic Illness and Mental Health are so closely connected

11. Finding Doctors that are invested in your health is difficult

Often times, specialists in a field are not specialized enough to be effective in managing your care. Finding Doctors that know about the latest treatments and who is also willing to think out of the box is nearly impossible.

12. Dealing with stigmas is frustrating

Many illnesses, such as Chronic Migraine, ME/CFS and others, have negative stigmas. Migraines are not just bad headaches and ME/CFS is more than just being very tired, for example. These perceptions cause people to treat you like your illness isn’t serious enough to affect your life.

13. You are required to plan out every step of your day

Simple tasks, such as personal hygiene and getting dressed, uses an amazing amount of your energy. Sometimes, just getting ready to leave the house can exhaust you to the point that you cannot do the activity you were planning. The most simple things have to be planned so you can pace yourself.

Why this Matters

It is important for people that do not battle Chronic Illness to have an understanding of these things. Keeping these in mind will help you know what a person with Chronic Illness is going through in their day-to-day struggle.

It is also imperative for a person on a journey with Chronic Illness to be able to recognize why coping with their illness is difficult. Knowing these things can help ease the burden, even if only a little while.

What items would you add to the list?


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13 Reasons Why Chronic Illness is Hard

48 Comments

  • jeannie blevins

    Thank you for such a great article. It was right on the mark. I have a rare blood cancer that is terminal. Although to someone who just met me I would look normal I deal with all the things you discussed in the article along with the financial burden. I try to work full-time to have insurance, but have to miss a lot of work because of my cancer and side effects from the chemo treatment I take. I am single so I have no one to share the burden of the finances or even to have someone as a caregiver on my bad days. It is a daily struggle to get my boss to understand the fatigue, nausea and other symptoms I deal with daily. I am a six year cancer warrior( I will never give up the fight to find a cure, even if It is for someone else and not for me). I just wanted you to know how much strength I got by reading your article and wanted to thank you. GOD BLESS.

  • Chris

    Several members of my family and I have chronic illness and what you say is 100% true. It can feel very lonely and difficult. Thanks for sharing!

  • Brandi Wiatrak

    This list is so helpful and is a gentle reminder to others to be mindful and compassionate to those who suffer from a chronic illness. I have many friends and family who suffer from a variety of mental illnesses and it’s articles like this that help to break the stigmas. Thank you for such a thoughtful article.

  • Colleen

    I have had Type 1 Diabetes since age 2. Incurable at the moment, so 100% a “chronic” illness. One thing I would add to your list is acceptance. Accepting the reality of our situation means we aren’t wishing things were different and resisting how life has turned out for us. I know plenty of type 1 diabetics who struggle with their diagnosis because it has made them “different”, especially if they were diagnosed as a teenager. Acceptance doesn’t mean you’re happy with it — it means you’ve decided to stop choosing to let the diagnosis be an excuse for your misery. And for many people, acceptance makes all the difference.

  • Lauren

    Thank you for this great post. Every point you make is so spot on! When someone healthy hears “chronic illness”, I think they picture someone who lives a fairly normal life but has an issue that acts up from time to time. They don’t realize that being chronically ill can affect every single aspect of your life. For instance, a few more reasons it’s so difficult to be chronically ill came to mind:

    1. the financial difficulties that so often come with chronic illness. It’s hard enough being sick. Stress makes most illnesses worse, so worrying how you’ll afford your next treatment – or where your next meal will come from – certainly don’t help.

    2. If you’re not already in a relationship when you get diagnosed, it’s easy to feel unloveable & like so much of a burden that no one could ever fall in love with you. (“Why would anyone want a partner who’s always sick & miserable and that they have to care for?” often runs through my head.)

    3. Chronic illness can take away your dreams in an instant. I dreamed of being a mother, but it’s just not feasible. Even if I could carry a baby (which is doubtful), I’m never healthy enough to care for a child, so even adoption isn’t an option. I don’t know if I’ll ever get over that.

    4. And now I would add “The government’s imaginary opioid epidemic now makes it close to impossible for many patients to find any relief, even though less than 2% of drug overdoses involve prescriptions from chronic pain patients.”

    Your point about isolation is so right. I literally have no friends left in my life, and I never feel well enough t go out & meet new people. And even if I did, we’d have nothing to talk about because I live 95% of my time in bed. It’s like I live in a separate universe…

    • Jen Cannon

      These are perfect additions to my list. Life can be really hard and the struggle doesn’t seem to let up. It isn’t that people don’t understand…it is that they don’t even try to understand. It is frustrating.

      Thank you so much for your comment, it is greatly appreciated!

  • Laura

    Great post! I think healthy people struggle to get to grips with this concept. It isn’t just being ill. It’s being never ending ill and never being well

    • Jen Cannon

      Oh yes! Fortunately, my kids were grown when I got sick and they don’t like seeing it either but they are old enough to understand. I can’t imagine having the energy to be a mom right now…hats off to all of the moms with small kids and chronic illness!

  • Malin - Sensational Learning with Penguin

    I think your list here is really helpful and informative. I think there’s also an issue with actually getting diagnosed. It can be a fight for diagnosis, and if one of your main symptoms is chronic fatigue, how likely are you to have the energy to chase a diagnosis..? And when people dismiss even those who actually DO have a diagnosis, why would they care about those who only have symptoms but no ‘label’ for them? xx
    #KCACOLS

  • Emma Dowey

    So true. my mum has CFS and fybro and the stigma is hard to deal with. other people can be so dismissive and judgmental. I have a phobia which has plagued me all my life – vomit phobia- and while i function pretty normally to most people, it literally impacts everything.
    Thanks so much for linking up at #KCACOLS. Hope you come back again next time!

  • Lisa Ehrman

    I agree with all of these. The one that’s the worst to me is the doctor issue. Going undiagnosed and misdiagnosed causes years of misery and wasted time that we could be undergoing treatment.

  • Michelle

    The hardest part for me is definitely that if people can’t see the issue, they can’t understand what is happening. I do push myself as I have a brain injury that causes numerous invisible problems, but it is exhausting.

  • Alice

    I have never related with anything more in my life! Every point is bang on and it’s so hard to explain it all to people without sounding like you’re being self-pitying when actually it’s just your reality. Really great post, reminded me that I’m not alone!
    Alice Xx

  • Kayla

    I couldn’t have written this better myself, took the words right out of my mouth. These couldn’t be more true, and the one that frustrates me most is that life doesn’t care to take a break for you, life must go on. And that’s so draining sometimes. People around you cannot relate, so you have very little people to even understand you. Such a great post!

  • Cait

    This was a really insightful and thought-provoking post. I’m incredibly fortunate not to have a chronic illness, and I think that as a result, I and many other non-sufferers often don’t realise just how much of an impact an illness can have on someone’s life.

    Thank you for sharing, I’ll definitely keep this post in mind from now on!

    Cait | naturalcait.com

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