When no one cares about your chronic illness because it isn't cancer

When no one cares about your chronic illness because it isn’t cancer

This week my sister and I were discussing why people don’t care about chronic illness and it reminded me of a post I wrote in 2013 called “why nobody cares about chronic illness.” After re-reading it I realized that I’ve learned a lot since I originally wrote that post. I wrote it when I was angry and still deeply grieving over the life I had lost. At the time I was still going through Lyme disease treatment and I was a mess, and few people cared about what I was going through. While I had an IV sticking out of my arm for treatment I was actually asked to volunteer at church by watching 18 month old children. I was furious that what I was going through was so overlooked that even though I could barely walk my church, the people who should have cared about me, asked me to watch little children. Since then I’ve become more accustomed to my chronic illness and learned to deal with things better therefore I decided I needed to readdress the topic.

Why do people prefer to downplay or ignore chronic illness?

 The older I get the more I realize that life is hard and most of us are just doing our best to get through and enjoy ourselves a little on the way. There are numerous bad things happening all around the world that we get bombarded with every day. Every time we turn on the news someone is getting murdered, children are starving, somebody amazing is dying of cancer, children get kidnapped, a town is wiped out by a tornado, terrorists are blowing up innocent people, and it goes on and on. It’s a rough world and many of us deal with it by shutting out the bad things. We can’t cry about all the bad things happening because we would never stop crying, so we almost become numb to tragedy. Therefore it’s actually not all that surprising that no one cares about chronic illness. Regrettably most people don’t even see chronic illness as a tragedy, they see it as a minor irritant that can be fixed by going to the doctor and taking the appropriate medication.
When no one cares about your chronic illness because it isn't cancer

People like helping in the short term

Another reason no one cares about chronic illness is that when bad things happen to people we know we are really great at helping in the short term. Somebody is sick, great I’ll drop everything to help for a couple days. Somebody just had a difficult birth and needs some TLC, great I can help with that. Somebody has a loved one die, I’m there as a shoulder to cry on. Someone lost a job, I’ll drop all the cash I can spare in the mailbox. Somebody is getting a divorce and needs emotional support, I’m there.  But the thing is these are all examples of short term assistance. As human beings we are great at helping in the short term, but anything that is long term (not to mention forever) like chronic illness we don’t know how to handle it. This is why the person who has a minor surgery gets much more support than someone with a chronic illness. It seems backwards that everyone will help the person who had the flu, but they aren’t willing to help the person that is always sick.

People with chronic illness just need to “toughen up”

There is also the perception that because we have chronic illness and it’s going to last forever, we have to get used to dealing on our own. To help us wouldn’t do any good because we are going to have to learn to be independent due to the indefinite nature of our illness. This is tough to hear. There is nothing like being at the end of your rope feeling like your whole life is in pieces and then you’re told you just need to toughen up and learn to be independent. Toughening up just doesn’t cut it though. Chronic illness can and does destroy your life, it isn’t just a matter of getting over it. We need support and love and understanding to help us to stay strong. The more support we get the more will be able to weather the rough times.

If you have a friend or loved one with chronic illness, I know it is hard to be endlessly patient, but please keep in mind what they are going through. Ask them about about their illness, find out how they live from day to day, ask them what their future holds, ask them how their care could be better managed, ask how you can lighten their burden. Ask them all these things and support them, support them, support them.



 

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28 thoughts on “When no one cares about your chronic illness because it isn’t cancer

  1. We definately need support. I guess I have realised that the best support is from others who have the condition. Even then, they may be too sick or in pain or handling their own problems to respond. So I hear you. I often read your blog and many other peoples with fibro or chronic illness but my wrists are in so much pain it's too much to write a response.

  2. Dear Chronic Mom,

    A friend of mine recently linked to this blog post on her Facebook page. After reading your blog I let her know that I found it to be a bit offensive. I'm writing today to let you know the same thing.

    I have friends and family members who have been diagnosed with rheumatoid arthritis and fibromyalgia and depression and anxiety and multiple sclerosis and all kinds of other horrible, debilitating and life-changing illnesses. I don't ask them about their struggles every time I see them because who wants to be reminded of the things that make you feel horrible? I don't see them as "So-and-so with Fibro" — I see them as the people I met before their disease or illness — the people I realized I enjoyed being around because of their personalities, not their health.

    Just because people don't ask you how your illness every time they see you doesn't mean they don't care. I refuse to be the reminder that someone is struggling on an almost daily basis with an illness life has handed them. I'd much rather be the reminder that no matter what they're dealing they are still the person at the core of that and that an illness doesn't define them.

    People with chronic illness should never expect their family and friends to remind them of something they are struggling with. They should, instead, let them know when they really want or NEED to talk about everything that is happening with their illness.

    1. For a lot if people it's not easy to ask for help. I agree with you in the sense of I don't want to be reminded that im sick. But it is nice from time to time that ssomeone will ask how I'm holding up. But all the time? No.

    2. And a true and good friend WILL ask you. Like when she can see that you're down or just not acting yourself. Or maybe he'll see you wince while reaching for coffee mug.
      I'd much rather people pay attention to me as a person than to my illness or disease.
      And I am speaking from experience. I, too, am dealing with an incurable disease that will eventually win. The people who know me well enough to know when I need to talk are always there when I need them.

      1. Actually i cane to this site by googling why friends dont care about friends illnesses..one of the theories i had b4 was Tina’s approach..this theory that they dont want to upset us is something i would like to believe is why most friends dont seem to care..in over 20 years and two serious illnesses i can count on one hand the friends who ask me how i am doing health wise..thats a lot of other ppl who dont want to upset me lol

  3. Having both really opened my eyes in how differently each is treated. I have to admit that the more help and emotional support I was offered for the breast cancer the more annoyed I got…what about all the years and daily pain and struggle that came long BEFORE the cancer and continues long past it. I'm thankful that cancer patients have a huge support network, but I'd propose that those with chronic illness need it even more.
    http://www.rebeccazook.blogspot.com/2013/09/and-so-it-begins.html

    1. It must be interesting to have seen both sides of the coin. I too am really grateful that cancer patients have a huge support network, they really need it. Too often people think I'm putting down cancer patients when I compare their support network to those with chronic illness, but really I just wish people would take chronic illness as seriously as they do cancer.

  4. Totally feeling this today.I know hubby is taking on more and more chores and i know he is lonely when i sleep/crash before he even gets home from work .He is supportive as much as he can be but telling me to "take something" when im in pain doesnt help!…..I want the old me even after nearly 15 years with fibro.I miss having energy to work a 44 hour week on my feet and then still clean the house and do the chores in one day.I miss being able to walk and stand as long as i want without excruciating pain.

  5. This is a great post. Your last paragraph I think hit the nail on the head and hit on something that has been growing within me as my major pet peeve of being sick and that's the healthcare system. How are we supposed to get decent healthcare when our doctors don't even talk to each other? Hell, most of the time they barely listen to US.

  6. Thanks for your blog 🙂 so true. I also find that people do not notice that with chronic illness comes limitations. It is obvious by what they ask you to do or expect you to do. Although I may be able to walk it doesn't mean I'm not dealing with limitations. Also people lose interest after they realise they don't know how to 'fix' you. They've given you all their suggested remedies and figure you're just ignoring their ingenious way to get better. It's quite ironic when they figure they can do something that docs have already labelled as incurable. So because they can't fix you the idea of talking about your illness or what you're dealing with doesn't interest them as they have no further 'fix' it suggestions for you. They fail to understand that 'support' is the biggest need we have and it has nothing to do with trying to be fixed. We leave the 'fixing' part to the professionals to figure out.

  7. I know this post is very old, I just came across it unfortunately! I love the truths you speak for all of us & for those of you that don’t understand be thankful you don’t. Just goes to show the importance in the words you write. I really don’t know how you’re able to find the strength or energy to write but I appreciate that you do? So often I hear my voice in your words, thank you! Melo

  8. Dear Shelley, I recently read something that shocked me. I read that people have the same expectations of the chronically ill as they do of healthy people. I never had such expectations of someone who told me they’re chronically ill even back when I was well, so this idea is completely foreign to me. I think this is why your church asked you to provide daycare or nightcare for their toddlers/babies. I find this so unbelievable – that people can be that ignorant. It’s maddening and upsetting and the worst part is they’re putting you in a position where you have to look like ‘the bad guy’ because you have to say ‘No’ to their “reasonable” request. And let me guess – they asked because they just know that you have the time to do it. Oh my…. how do we cope with this day in and day out? How??!!

    This isn’t about not receiving enough support. It’s about other people lacking common freaking sense. And this is your church doing this to you – not your boss at a job you’re paid for.

    This attitude towards us chronics from society is universal though, so the only ‘fix’ I have for it is to expect it and to learn to accept it and to cut everyone out of my life who has a pattern of making me feel badly about myself over things I cannot change. I find myself saying The Serenity Prayer over and over and over.

  9. For what it’s worth, I have chronic fatigue and also cancer. And no one cares. I’m sorry people are being jerks to all of you. Just giving you another frame of reference. I think people are just becoming more selfish. In a couple weeks I’m going for more treatment and scans. Alone. No. One. Cares. No offers of support, no GoFundMe, no Relay for Life team. Just silent people who ignore it.

  10. It is down to the difference between the short-term and the long-term. Kafka got it absolutely right with Metamorphosis – people’s sympathy simply wears out. It’s just human nature, unfortunately. People don’t want to know about things that don’t get better, it’s too depressing, maybe even boring.

    The most irritating thing, for me, is that the very same people who eventually will specifically tell you they don’t want to hear about your chronic (and hard-to-cope-with) health problem, will then complain to you and expect sympathy when they get a short term (and less severe) condition like a bad cold! Perhaps it reflects badly on me that I find that very irritating, but I do. Chronic illness, I suppose, makes you a less nice person.

    1. It’s all about insurance with doctors that’s why they lie. A law suit can put them out of business. I was told this by a neurosurgeon. I was told a bunch of lies over the years and he said that’s why

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