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 update this post.
Most people do not care about chronic illness. That is a fact, but why don't people care? 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.
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.
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. Toughing 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.
Yes, yes, yes!
ReplyDeleteExplains it well.
ReplyDeleteWe 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.
ReplyDeleteI have the same problem! I'm a terrible commented for that reason, though I read a lot of blogs.
DeleteThis comment has been removed by the author.
DeleteA great article. Everyone needs support and understanding especially those who are suffering with chronic illness.
DeleteDear Chronic Mom,
ReplyDeleteA 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.
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.
DeleteAnd 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.
DeleteI'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.
Tina, the point of my post was not to say that no one out there in the world cares about chronic illness at all, or course there is. I have great friends and family who do care and are very supportive and I know of some others who do as well. The point of my post is that society does not care about sick people.Society doesn't care that there are so many people lost in the medical system. Society doesn't care that there are very few doctors out there who will even deal with the chronically ill. Most doctors just write us off as lost causes and so does society. Society doesn't care about sick people who can't work, we are seen as lazy mooches who sit around and sponge off the system. There is no societal support for someone who gets sick and loses everything.
DeleteIn a country that was based of the idea that hard work can achieve anything, what about those who physically can't work hard, where do they belong? Are the chronically ill able to get employers to adapt to their disabilities? I know of very very few. Most people lose their jobs, and guess what, society doesn't care. Their immediate circle of family and friends might care if they are lucky, but no one else acknowledges the injustice.
If you will reread my post, I never said that friends should ask every single day. I said their friends should ASK, you know, occasionally. Because that's how you show you care. A friend of mine just had surgery and will be recovering for the next several months. I don't ask her how she's doing every single day, but I check in on her once in a while to see if she's okay. I check on her to see if she needs anything because I care. I don't think it's a stretch to ask for people with chronic illness to be treated the same way.
Support will look different for every person with an illness. Some people feel cared for when their friends ask how they are doing, some people don't like to talk about their illness ever, most people are somewhere in between. If you have friends with chronic illness I suggest you ask them how you can show that you care. My opinion or your opinion are not relevant to the matter.
You hit the nail on the head. Support looks different for every person. I propose that just as there are the 5 languages of love, there are several compassion laguages for chronic pain. I get crushed every time someone says that they handled my same pain just fine, so why should they help. Or the people who told me that it was more fun to help and visit my friend dying of cancer, than it was to visit me. To be told that service and visitors had been with held because I didn't spiritually lift people. Everyone deals with pain differently. This mom and I both had years of chronic pain before cancer ended her fight. Mine however wasn't terminal. 1 childbirth with 5 surgeries in 16 months. Church leaders and "friends" telling me that I should be used to surgery at this point, that help wasn't needed for our family. this time left me with debilitating chronic pain for years, but I was expected to get over it. Now I'm back to just a crappy rollercoast of pain, year after year, month after month.
DeleteI've gotten off topic. Support looks different for each person because how they want help is different, and their circle of recources looks different, and those with power to set up help have their own medical past. Some people are happy with what is given. Some people want less. Some people want more than those around them think they need.
It sucks enough to be sick, but to be judged on support styles and needs just plain sucks. And to have people with chornic health issues cut down/dismiss the feels or needs or wants of another chronic pain person is just heartless. Being told that your own truth is offensive is so dang hurtful to the heart of the ill and this hell of a chronic pain life we've each been given Being told what kind of support you need, without being asked, is crazy screwed up. People are different, pain is different, life situations are different, pain tolerance is different, support systems at anyone point is different. People who care find out how their support is wanted and needed. For me, you have to prove yourself trustworthy before I trust you with my heart and needs.
Tina: If you are offended, don't read, don't comment, don't pass on your negavitiy.
Chronic Mom: thank you for continuing to blog, for opening your heart, for voicing truth that isn't voiced often enough. For writing about the dark side of chronic pain, despite people's vocally negative comments.
I have felt much strength in your words. I'm glad you trade physical pain for writing for me. And I hope you have the mental strength to keep on sharing.
(totally flared up myself, hopefully when I re-read this tomorrow, I will find it as clear as my heart feels)
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.
ReplyDeletehttp://www.rebeccazook.blogspot.com/2013/09/and-so-it-begins.html
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.
DeleteTotally 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.
ReplyDeleteMe too. I didn't know how good I had it until it was gone. Just having the ability to walk without pain would be a dream come true!
DeleteSo true
ReplyDeleteThis 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.
ReplyDeleteRight! I think a lot of progress could be made in helping the chronically ill if we could just get some decent health care.
DeleteYou got me going again, and it turned into a post on "My Chronic Illness Dream" of communicative freakin healthcare - http://countingmyspoons.com/2015/04/my-chronic-illness-dream/
DeleteThanks 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.
ReplyDelete