"For many people, the holidays and all the festivities are a wonderful time of year," says Noelle Chelli Lopez.
"But for those of us who are chronically ill, holidays can cause an increased level of stress, and often leave us feeling even more isolated and left out from normal life."
Many hidden challenges of living with chronic illness and pain can so often be magnified at this time of year.
"While chronically ill patients struggle with sharing feelings, loved ones are confused on how to offer support," says Lana Barhum.
"There are many things a chronically ill person wants their loved ones to know but are hesitant to share."
—We think we let you down: "Chronically ill people often have to cancel plans or are unable to follow through on promises. Even though your loved ones tell you that they understand, you still feel bad," says Lana.
It's never because we don't want to, we long to connect with others, to get out when it's so rare, to keep our word, and enjoy this time too, especially when all are celebrating.
But articulating this, explaining that we cannot do as planned creates its own kind of pain.
It can feel as if our illness has let others down, while if they are less than understanding, it can make us feel guilty for being sick.
"Chronically ill people may also apologise to explain that they are just as upset about their inability to participate," adds Lana.
—Our grief is ongoing: "Grief comes in waves. One minute, you are accepting the changes and challenges that chronic illness brings, and the next, you are overcome with sadness," says Lana.
This is of course, magnified at Christmas. "It is a lot more complicated when you are sick during this time of the year," says Annie Perkins.
"The holidays can be a trigger, a timeline, a reminder of how long you've been sick, and of all that has gone on throughout the year.
"It can feel defeating when you are at the same place." Equally, if things have changed for the worse, this too creates complex feelings.
—Over-Stimulation Flares Pain: Central sensitisation and allodynia can make even the briefest time in company exquisitely painful.
"Whether it’s stress, big crowds and noise, or simply the excitement of the holiday, over-stimulation is quite often the cause of a flare,” says JoJoisms.
Keep in mind that stimuli increases pain dramatically, and that we may need to take frequent breaks to escape and calm the pain.
—It is hard to communicate feelings: “The holidays can bring family and friends who you do not see regularly, people who care and have many questions," says Annie.
It's hard to articulate a life so vastly altered, so limited by disability and pain.
"People who live with illness, pain, and loss of independence often struggle to find the words to describe how they are feeling," says Lana.
"Sometimes they don’t feel comfortable talking. When there is much you can no longer do, there are plenty of times you just don’t know how or want to talk about it."
"It is fine to say, 'I don’t want to talk about my disease today, maybe we can get together after the holidays'," adds Annie.
—We Still Need to Manage Symptoms: "One of the hardest things is the disruption of routine. Many are on strict regimens. Having a few days out of that routine can really throw them off.
"It is not as easy as throwing back pills and going on with the day. It is deeper than that.
"This is one of the things that is hard to explain to others who are not chronically ill so it's important to let others know when I am at my limit."
—Ask how you can help: "People who are chronically ill can struggle with completing basic tasks, and during the holidays, those tasks increase exponentially," says Noelle.
"The best gift you can give to someone who is sick is the gift of assistance. Stop by and vacuum, drop off a meal or offer to pick up some groceries."
—We often don’t say if we're struggling: "They may struggle alone because they hate to make people feel uncomfortable or obligated in any way," says Sarah Turner.
"Many times, you might notice they disappear for a time. This is often when they are trying to manage their symptoms and are too sick to do much else." If you notice a friend's absent, send a thinking of you note. It means so much.
—We are grateful: It may sound contrary but living with pain and such limitation gives you a profound gratitude for so many things many take for granted.
"Living with illness and pain gives you a different perspective, you can find gratitude in the simplest of things," says Lana.
"You are grateful when well enough to spend time with a loved one, outside or reading a book. Mostly for the people in your life."
—Send invites even if you don’t think we can come: "Feeling left out is incredibly difficult. Sending us an invite and letting us know there is no expectation, makes us still feel included," says Noelle.
Things to Keep in Mind About Chronically Ill Loved Ones During the Holidays—more links below <3 Gentle hugs x x x ... See MoreSee Less
Merry Christmas to you The Princess in the Tower. Thank you for your timely article. I was just about to enter my own version of this topic to my group, but you have worded it perfectly. thank you and I hope it is ok that I share your articles. Have as little discomfort as possible today and always and go safely and happily into 2018. Gentle hugs to you xox <3
Thank you for this post and Merry Christmas. I am in bed right now and fighting tears. My son and his wife are here and their 2 year old and new baby. I have spent some time with them but my pain is so bad right now I can't leave my bed. They are in the basement and I can't sit there and be comfortable. We see them very little and I want to be with them. We also have a gathering of my family at my parents today and right now I don't know if I can make the 90 minute drive there and back. I don't truly think anyone understands how bad it is and how hurtful it is to not be able to do what I want with my family. I hate to be a downer too and feel guilt, just as you said, for not doing my part. I have always filled stockings for everyone and this year is the first that I don't even have anything to go in them. I just couldn't do it. I was always that Mom who did it all on the holidays but no more. I only seem to get worse as the years go by and I'm 59. I should be able to do more I feel but I don't know what else to do to try to get better.
I can't go out anyway, most people use way too much scent and use scented products in the homes at the holidays and that's a trip to the ER....
Relatable struggle, that is so misunderstood. If my only worry was if I could attend an event, how I would give anything. . .
“You’re lucky you’re young,” casually comments the older woman sitting next to me, “You don’t have to worry about arthritis in your hands.” I knew it was an innocent comment intended as a lighthearted joke," says patiet-advocate Christina Carrell.
"An attempt to be friendly, or even as a compliment of sorts. But I also knew how the observation, however well-intentioned it may have been, was wrong at best and hurtful at worst.
"I knew all too well that young does not mean disease-free, worry-free, or especially pain-free. I knew that pain could strike at any time, and for me, had begun its assault on my body at the ripe age of twenty."
No matter how long you've lived with chronic pain and invisible illness, one thing that forever complicates and creates tension for all of us is the incongruence between our looking well and how we actually feel.
It creates an equally vast gap in the understanding of others, even those we're closest to, and despite the prevalence of invisible illness and chronic pain, also even our doctors, in turn producing another kind of pain, that of being misunderstood.
"Not only do you have to put up with challenging, often painful, and sometimes debilitating conditions every day," says Wyatt Myers.
"But on top of that, you may have to face skepticism from people — friends, family, and co-workers, as well as strangers — who don't understand what's wrong with you."
It adds to the stress of living with invisible illness and disability when you have to also try to convince the world that your symptoms and pain are real.
Though even if heartwarmingly empathetic, it is of course, impossible for others to truly comprehend without direct experience, something so complex, a life so vastly altered, and the unending process each of us faces in every moment of everyday.
To manage the pain and avoid flares as best we can, and, of course, endure those flares when they happen.
Every act is assessed for potential threats and consequences, each one paced and measured, and likely done at the expense of another task, no matter how essential.
Before all else this is a completely different way to live life, and one that widens the gap of others' understanding, especially when this too is as hidden as the chronic illness(es) and pain.
In the spirit of raising awareness, hopefully a little empathy and compassion too, here Christina offers five reasons we should never assume another person isn’t in pain. Here are some excerpts:
—Many people with chronic illness look healthy: "Chronic illness doesn’t always come with a walker, a wheelchair, a cane, a cast, a brace, or any other assistive device," says Christina.
"Of course, the absence of these items can be both a blessing and a curse. Among people with multiple sclerosis, a whopping 75 percent will never need a wheelchair. But that doesn’t mean they aren’t suffering."
—Chronic pain patients are good at pretending: "Although I never deny that I’m in pain, I don’t enjoy the pity that comes from admitting to everyone I meet that I’m in pain every day. I’m also the mom of a toddler, and I don’t want him to always witness me suffering every day," says Christina.
"So when I’m able, I’ve learned to put on a happy face and ignore my pain the best I can. Many other chronic pain patients with all sorts of ailments, especially invisible ones, learn to do the same thing in order to carry on with their normal lives."
—Disease and pain can strike at any age: "Many people falsely imagine disease and pain as afflictions confined to old age. Sadly, many diseases affect people of all ages, including children," says Christina.
"Over 90 percent of people suffering from Lupus are between the ages of 15 and 45, for instance. The average age of onset for migraines is twenty. And Juvenile Rheumatoid Arthritis is just one example of many diseases that affect children under the age of seventeen."
—Chronic pain patients have good days and bad days: "Many diseases and ailments that cause immense pain involve flareups and remissions. On my good days, when I’m out taking my son for walks in his stroller.
"You’d find it hard to imagine that there are many days where getting out of bed is a goal I can barely attempt.
"Just because someone looks good today doesn’t mean they look good every day. There can be significant consequences involved with assuming things about other people."
What would you add to this list? As always, feel free to add your thoughts below. <3
Lack of external 'signifiers' (crutches, wheelchairs, etc) are no indication of a person's health... As someone who has both chronic pain and mental health issues, I'm all too aware of this, as there is very rarely a visible sign of what I'm going through. I'm 2 months past the latest surgery, and I'm having trouble keeping my own awareness up now that I'm not on crutches, so I understand why others don't. But it is a problem.
Thank you for this article. Good read as always princess 😍. I’ve just spent a week in hospital for an acute condition. And trying to get people to understand the acute and the pain condition together is like getting blood out of a stone! Wish people wouldn’t judge so much. Had more compassion and educated fhemselves better when they came across a condition they didn’t know or understand grrrrrr
My pet peeve is when I tell people I have chronic pain and they say "but you're so young"... Irks me everytime.... like my age has anything to do with it...
Hugs back to you, my brave friend ♡ It's your journey and nobody elses business. Keep smiling, keep active & loving life 😚
I’ve had chronic pain for 19 yrs it’s such a lonely journey but I’m really happy I’ve found your page and found someone that really gets it, thankyou 🤗
I know 80 year olds that are in better shape/health, and lead more productive lives
Hi there, I feel compelled to tell you a little about my chronic pain and how I have managed being mistrusted by unknowing persons.....these persons being friends. I have had chronic back degeneration since the age of 11 years, I am now 62. At 17 years a diagnostic test scared me for the rest of my life with Adhesive Arachnoiditis. It is very painful. I have pain every day of my life in varying degrees. In my early 40's I was told I would be crippled and wheelchair bound very soon. The ONLY real evidence of my pain was my face and an unusual stance (typical of back and limb pain) I was determined to fight against the pain and have been very active since my 40's. I am on a disability support pension and my days consist of Yoga twice a week, Line Dancing 3hours 3 days a week.. I endure my pain silently and therefore have been accused of being a fraud.....I deliberately smile and have a happy demeanour..... some of the moves in dance and especially in yoga are strenuous and quite acrobatic .....for a person ...????.... with a bad back.???..and on a pension???. This can be very hurtful and adds to my pain. I wont let it get to me, thank goodness my exercise regime has kept me strong enough and flexible enough not to let the Arachnoiditis ruin my life. Keep strong, sending hugs from me to you XoXo
Although our lives are so often already stripped to their barest bones with complex chronic illness and pain, when immobilised by a flare-up or setback, it can feel entirely paralysing, as if all life has stopped.
When you're stuck in bed and in so much pain that even baring weight induces fear, with allodynia translating even the most innocuous stimuli to pain — from sound to a cool breeze that sends your pain levels soaring — it’s hard to think of anything at all beyond the moment, beyond that pain.
“Things can get crazy during a bad pain flare," says C. M., who wrote the first post. "The “pain brain,” as I like to call it, is in full effect and vastly limits my capabilities.
"My attention span and patience are nonexistent. Every day of a flare presents challenges, emotions, limitations and frustrations that many with chronic pain have to deal with regularly.”
With their exacerbated pain and symptoms, increased disability, isolation, and of course, the uncertainty, anxiety and stress of not knowing when they’ll abate — lasting as they can from days to weeks to months — flare-ups are perhaps the hardest of all to cope with.
As it’s not only the flare or the guilt and helplessness these times engender, nor even the depression, loneliness and loss, but also the consequences, and the longer it goes on, the greater those consequences.
Living with a condition that can halt everything in an instant, especially if denied enough recovery and rest, creates the most complex feelings of all, which are then fused with the greatest pain and limitation.
In the spirit of helping others understand, here are some excerpts from C.M.'s post:
—Sometimes There's No Cause: "I try to figure out how much things will cost me in advance and plan accordingly. Then there are the flares that are unexpected, unwarranted.
"There isn’t always a moment where I know, “Oh this is going to send me into a bad flare." Sometimes, I just wake and don’t know if it is just a bad day or the start of weeks or months of debilitating pain.
"Other times I am in the midst of something where I just know the next few days or weeks will be bad. There is nothing quite as bad as knowing that whatever I am doing will cost me for weeks to come."
—We Don’t Know When it Will End: "I have flares that last two weeks and others that last upwards of three months. Sometimes I wake up and the pain has lessened and I am left with the “flare hangover” of severe fatigue and brain fog.
"Give me a few days and I can be back to my 100 percent. (Please note: my 100 percent, which is not the same as a healthy person’s). Other times, I get admitted to the hospital. I receive infusions or treatments in an effort to break the cycle. I try new treatments or medication combinations. Other times, my doctor just tells me to rest."
—It Can Go Away As Quickly As it Came: "Sometimes, I wake up and return to my baseline pain. Why? I don’t know. But, I am so grateful when those days happen, however they happen."
—We Don’t Want to “Waste” Medications in Case Tomorrow is Worse: "Say I wake up at a 8/10 pain. I have medications that can lessen that pain and make it more tolerable but I am only allowed to take them so many times each week or day.
"What if tomorrow is a 10/10? I will be kicking myself for using the medications when I was at an 8."
—We Won’t Eat: "I have no energy to do anything except exist. The thought of getting to the kitchen to cook something is excruciating. Calling takeout would require making coherent sentences to order and then answering the door. Sometimes, all I can do is breathe."
—Everything Takes Far More Spoons: "When I have no choice but to do something, it is far more taxing than normal. And if I am not back in my bed at my time of expiration, you can expect me to collapse right where I am. Literally.
"Like, when the clock strikes midnight and the carriage turns back into a pumpkin, the gown back into rags... My body goes from capable to incapacitated in the blink of an eye."
—Sometimes, We Don’t Leave the Bed for Days: "I get up to use the bathroom and that is the extent of my physical activity. I will carry an armful of water bottles to my nightstand so I don’t have to repeatedly get up for water."
—I Cry...a Lot: "I am not saying this to make you feel bad [but to show] how difficult flares are, not just physically, but mentally. I am overly emotional and charged so the tears come far easier."
—It’s Not You, It’s Me: "If you speak or see me on a bad flare day, I am antisocial at best. It isn’t anything you said or did. It is 100% me. I am tired, hurting, frustrated, possibly guilty and/or angry depending on what landed me in this situation.
"It isn’t your fault and I am sorry if I seem grumpy. I promise you did nothing. My body did."
I try and restrict my medications- hang out as long as I can, because I don’t know if it will get worse or if I can “ride it out”.
“My” normal is about 50% of what I was capable of before chronic pain (CRPS). And every day I still have to tell myself that I “can’t do it all”. I want to - but pain can be mean and strike at any moment.
Gentle hugs to all other pain warriors.
Mike Smith this is what living with lupus is like....please read it....
This is heartbreaking to read.
Very true there is no rhyme or reason, I've given up trying to figure out flare ups and it's frustrating explaining to other people, that yes before a rest would help, or a pill, not any more.
Princess in the Tower articles are still my “ go to” reading. You were one of the first FB pages on CRPS when I was first diagnosed- you made a huge difference in my life at that time. God bless
Still sharing your page with my pain warriors.
I’m in the process of potentially being diagnosed with CRPS following knee surgery for reconstruction on my acl. It was my second surgery in 4 months on that same knee. I have lupus, so I know what flares are and what brings on them, but what are things that trigger a CRPS flare? Does anyones CRPS change on their affected limb? Right now my foot don’t turn a dark color as long as I move it some, but my leg is still turning dark. I’m praying hard that the orthopedic is wrong and I’m just taking longer to get back. I’m 4 weeks post op.
To be believed by medical " peofessionals" I can't for the life of me understand the people that one would think have the most compassion understanding, do not. Most are just bully's with a licensed degree. Sigh. Have had a few really come through for me but that is so so rare.😢😭
going to have a read as although we look normal its the alloydina ..which is deep intracrtable ans sooo painfull just a slight breeze can cause exruciating pain its like a thousand chinese burns on your neck a pinch a burn bees stinging ...tight vise pain flowing down arms from neck like a constant tooth ache can i take no more no ..have i got t keep going yes ..
yes, especially the we don't eat part for me. I am malnourished according to blood work and I believe it is true. I know good healthy food would make me feel some better but I can't shop for food or prepare much of anything now. I have a rare day where I can do something simple but I am often in bed with the water bottles too. I don't have an appetite so nothing sounds good and even if I could shop I would have no idea what to buy. What makes me mad is that my metabolism burns no calories it seems. Too many days in bed and too little activity along with aging mean that anything I eat leads to weight gain. I have to admit that I also eat ice cream and other things I don't need at times as it is quick to grab. My main diet consists of cereal. I want to feel better so much. I have a new granddaughter born two days ago and one that is five months old. I have two grandsons that will be two and three in January. I also have two teenage grandkids. I want to be involved more in their lives but traveling is so hard. I really hope and pray that we all get at least a few more good days. Thanks for the post
“No matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow.” ~ Maya Angelou
Just a little quote and note to say that I've not got lost in the Tower, though you'd be forgiven for thinking such. Sorry it's been a little while since I posted an offering for you.
In true princess style, trying to do far too much with too few spoons sent the CRPS/my hands/back/royal person in a spin, so that lead to a little delay.
It's two-years since the CRPS' simultaneous spread from wrists to fingertips, and still profoundly hampered by these embers for hands (they feel as if on fire, constantly severed and crushed, allodynia in full force too).
And as it's both, and as hands are incredibly useful devices, and as I still cannot open them, use or tap keys for more than seconds (humble improvement though that joyfully is), adapting to this while improving this is taking longer than hoped (ever feel like someone keeps moving the goal post?), but will get there.
So perhaps this quote is a reminder for me as much as it is for you, because it can become so easy to slip into darker places, to a state of loss and limitation, wherein every thought is tainted by such.
Because it's never just the illness that you struggle with, but the emotional toll of dealing with it all alongside severe, constant pain that wears you down.
It's hard to keep going when pain weighs heavy on every act, when each attempt at improving, each exercise, practice, therapy or treatment, and of course, pacing, falls short, or worse, causes a flare.
When our body doesn’t serve us, when it doesn’t ‘get better’, we can feel a sense a failure, no matter how unjust.
Be kind to yourself not hard on yourself for even the strongest are weakened by pain, whether it’s hidden or not.
When deep in depression, it's crucial to remember that these thoughts are often the voice of it, that they frequently feed off each other with their own version of events, keeping you under their spell.
If you're reading this while steeped in sadness, do not give up hope. Even the darkest, hardest, most painful and debilitated days pass, not that it ever seems possible in the moment.
In fact, those rare moments of less pain, the 'better' days, do often appear out of nowhere. We're so busy simply trying to survive, but this survival mode can mask that which remains, make us lose hope, lose ourselves a little too.
Even if dark clouds obscure your view and depression has returned or worsened, remember just how much you are surviving, are coping with, and are managing against such difficult odds.
So however bad it seems today, however painful, heartbreaking or sad, and however farfetched a 'better' day may currently seem, here's to life going on, and it being far better tomorrow. <3 Gentle hugs x x x
Thank you so much for all your lovely comments <3 It's always so lovely reading them, save the heartbreaking ones, though even these as they help each of us feel less alone. I was actually mid-response, convinced of enough spoons (!) when it flared fiercely again mid-sentence (CRPS is such a drama queen!). So instead thought it would be best to focus first on post for all of you, and then respond the instant it calms to more of a simmer. Know it's been the trickiest chapter yet CRPS-wise, and so grateful for your understanding and kind words and thoughts. Just as I'll get through this, so too will each of you. ❤️ Gentle hugs x x x
Thank you I am desperate to get back to work back to my purpose but it seems my body has other ideas and some days I feel like I'm getting worse not better. My weak hands are getting weaker and I couldn't control the kettle so I have my self 2nd degree burns all over my other arm yesterday. But today is a different day and life will go on xxx
So lovely to hear from you again The Princess in the Tower and thank you so much for your inspiring posts. Gentle hugs to you dear friend XoXo with love <3
<3 <3 <3 Sending you love and hugs sweetie. It's good to hear from you even if the news aren't that good. But, as usual, you face life in pain asxa really true warrior. Thank you for sending everyone hope when you're dealing with so much yourself <3
Hope you're feeling better soon, I'm currently suffering with terrible back, arms and hand pain I know how frustrating it can be to have limited use, but regardless you do a great job helping and inspiring us all so thank you xx
So sorry to read of your struggles PIT, so easy to forget that there are better days when in the pits of hell, but every so often they do come I want to remind everyone to hang on to the edge of the precipice until that precious day/hour arrives. I am having a rare one today after a few weeks of feeling like someone was trying to strangle me, they are still trying to work out what this new horror is. For now I am just enjoying this moment.
I think I have lost hope of a better tomorrow now . . I am happy for you that you have not.
I dont know if this will help any of you, I have Diabetes, Degenerative Disk Disease, Arthritis , Tendinitis, heart problems, and Glaucoma, I tried to quit smoking a few years back, and started eating Sunflower seeds, I had Nerve damage in my toes,, well I started noticing the burning and pain was gone. I have had Diabetes since 2004, Im still trying to get it under control. But since I use the sunflower oil, I havent had as much nerve pain as I one had, I told my Dr's I dont think they care really, but I had the test ran on my nerves and he noticed then, I had no more nerve damage in my feet.. Try the Sunflower seed or or the seeds,, the Seeds need to be unsalted. lol,, but try one teaspoon of the oil a day and see if it helps you, give it at least a month. I hope it helps with your pain,, hugs
I lived most of my life without knowing that the voices of depression and anxiety lie to you. I though all those cycles of voices were the truth. I'm 40 and I just learned the truth about those liars last year.
I guess we have to hope that's true
That's right Amen
Thank you, I needed to hear this today
Lots of love & a really big hug Josie Broughton x💜x💜x💜x💜x💜x💜x
"When you see me out in public, you think this is what I am capable of doing on a daily basis," says Lindsay Karp.
"But you don’t realize that some days I do not have enough strength to be here. You can’t see that my legs are weak and wobbly and that I’m praying through the smile on my face that I can make it.
"You also don’t see the rest of my day. You don’t realize that this is my big activity of the day, and that I must rest afterwards. You don’t see that I couldn’t prepare dinner that evening."
Every pain patient knows how difficult it is to constantly adjust to unpredictable symptoms and fluctuating pain and disability.
Our limitations may allow us to engage in an activity one day that is impossible to contemplate the next, or even again that same day.
You might be able to walk 10 metres but then it may an hour to recover, or 50 but then need a [painful] day in bed.
Healthy people tend to assume it’s all or nothing: we’re either ill or we're well; we’re either in pain or we’re not. If we’re seen doing anything ‘normal’ most assume we must feel good.
“Unless they’ve experienced it themselves, it’s difficult for people to fathom the debilitating effects — physical and mental — of unrelenting pain and illness," says Toni Bernhard.
This is magnified as people only see you at your best, but even an hour would have taken hours, or even days, to prepare for. They also never see the aftermath, the flares, and consequences.
The reality is that we have not only prepared extensively for every act — and have to pace and prioritise each, often leaving much undone — but can flare once it is over, whether for an evening or a week.
“Healthy people may not understand that chronic illness and pain is not linear. This means that the consequences don’t always match the actions. In fact, they usually don’t," says Kristen Spinola.
It's equally complex given the unpredictability of our pain and symptoms, with us just as uncertain on how we feel.
This is perhaps the greatest source of angst when it comes to our loved-ones' understanding.
Everything is undergoing a constant analysis, the preparation and planning for more demanding activities but also for small ones—we need to assess everything in terms of how it affects pain, energy and symptoms.
But even after years if living with chronic pain and illness, it's never certain. "When I’m faced with a beautiful day and I’m contemplating a walk, my head is calculating its very own spreadsheet of costs versus benefits," says Kristen.
"Will enjoying minutes of walking in the sun mean I’m down for the next day? Three days? Five days? A week? How high is my pain now? Will this help or hinder?
"How high is my stress? How is my mood? How is my fatigue? What do I need to do over the next few days? Will I be able to do it? Where am I in medication doses? Will they last the walk? Will I need more after?
"Finally is it all worth it? Now if you look back at all those questions, there isn’t a single one I can answer definitively.
"At best I can guess and more often than not, I’m very, very wrong. “Don’t you want to go for a walk on a nice sunny day?” seems like a very simple question, but to someone suffering from chronic illness and pain, we left simple behind a long time ago."
Many who live with severe and painful conditions can also only manage one ‘big’ activity a day, especially if it involves leaving the house.
If that day has a medical visit, for instance, everything pivots around that single activity and appointment.
The tiny one or two-hour window in which we see others may have taken the entire day to prepare for and more to recover from. Others may be able to do more, some even less.
Certain acts will always mean exceeding limitations, and consequently, cause the pain and symptoms to flare, sometimes for days afterwards.
"The human mind thrashes against this lack of ability to even vaguely predict the outcomes of our actions," says Kristen.
"Given a total lack of knowledge about the consequences, how do you make these decisions? Think on that for a second. This is how someone in chronic pain lives."
Sometimes, despite the most meticulous planning, prioritising and pacing, it doesn’t work out, or our medication fails, the weather turns out wet, damp or humid, or there’s another unexpected — and entirely unavoidable — reason for a flare.
"Many of us spend our lives imbalanced. We have no idea if what we choose to do now will mean that we can’t move tomorrow or that we will just get to enjoy ourselves," says Kristen.
"It’s hard to fight something you can’t see or even predict. It’s even harder when your mind is struggling under all the weight. And nearly impossible when everyone around you assumes your illness can’t possibly be that bad. Well they are right. It’s much worse.”
The Struggle You Don't Realize When You See Me Out and About buff.ly/2yRZ1ZZ
Shari Jennings Haynes these are always good articles
The unpredictability makes it almost impossible to have any kind of life. When we are ready to seize the moment and have some fun, because it is so rare that we feel okay - there is no-one there, they already forgot about us and moved on with their lives.
After 30 years of this, my brother still says things like "There are people who have no legs who are more active and useful than you!". I have given up using my energy on him 🙁 It is so, so hard to hear that from one's only sibling though. My doctors have set aside time to meet with him, he refuses.. I just don't understand the motivation behind that kind of mean-ness.
I have often said that "I wish there was a meter that could register how much pain you are in", it would also sort out the malingerers
Sometimes I get tired of using my good times to "be" normal in front of family and friends who have absolutely no idea how much pain you are in and how much time it takes to recover...
My husband is the only person who will ever know how hard my life is on a daily basis. <3
Perfectly said, I felt as though I was reading my own words
SO TRUE --- one act of exercise does me in for days!!
So perfectly explained.
So true, well written article..thanks
Very well said...great article!
Hidden by most so we don't get stereotyped.
Amen . I have rheumatoid arthritis disease and it has changed my whole world 🌎
"This constant struggle tears me apart. In my mind, I make plans and to-do lists. But when I try, I can’t do them all. My body simply won’t function in a way to do everything. This is my life with invisible illness," says Erynn Porter, echoing my thoughts of late.
It's hard never knowing how we'll feel, and it's hard never knowing when things might ease enough, or improve enough, after a setback or flare, so we can do what we long to or even what we could since chronic pain and illness began.
“These diseases are progressive and constantly change over time. So we have to constantly readjust our mindset," says Sharilynn Battaglia.
Though it's not only our mindset but entire way of living given that centralised chronic pain and systemic conditions vary not only from day to day but limb to limb, with equally varying levels of disability.
"So the feelings have to be accepted and allowed to come out, too. But that can cause intense fear that can leave us overwhelmed to the point of motionlessness," says Sharilynn.
Fuse this with severe pain, disability, fatigue, nausea and the fog, and however hard we try, things can come undone, and us too, feel like we're falling apart.
When every act is painful, from the most essential, like eating and drinking enough fluids, to far larger acts, there's rarely enough 'spoons'.
While the fusion of fog, fatigue and pain can set you apart from the world, and fill your own with sadness.
"It takes its toll, constantly feeling like there is a screen of pain between you and the outside world," says Jill Knapp.
"You can’t do the things you enjoy, and in some cases, you can’t do the things other people see as simple."
Though no matter how natural, focusing on this intensifies every feeling, and all else—including the pain. Our minds can get caught in a loop.
"When my brain gets like this, what I really need is some sort of regeneration. I’ll watch a movie, find funny shows on TV, kittens on YouTube, or bundle up and sleep," says Sharilynn.
"These “lost brain” days don’t last forever, though they do tend to come in clusters. After 20 years, the silver lining seems to be the fact that by letting these days happen, you allow for a mental reset.
"The negativity gets acknowledged, then let go—and that’s exactly what needs to happen.”
In the spirit of helping each of us get through these times, here are some gems from Toni Bernhard's book, 'How To Live Well with Chronic Pain and Illness: A Mindful Guide':
—It’s not your fault: "I blamed myself for not recovering—as if not regaining my health was my fault, a failure of will, somehow, or a deficit of character." Many who are chronically ill share this.
"It’s not surprising, given that our culture tends to treat chronic illness as some kind of personal failure on the part of the afflicted. Don’t make things worse by adding self-blame to your challenges.
—Making Peace with a Life Upside Down: "Accepting that life is uncertain and unpredictable is the first step toward making peace with your circumstances."
As no matter how trying, to resist circumstances is to add to their stress; focusing on the loss and pain so often magnifies it. Instead strive to make peace with where you are now and build from there.
It's entirely human to feel displaced, overwhelmed or caught in that complex divide between acceptance of the pain, illness and disability, and searching for ways to cope with it.
Yet making peace with this, however heartbreaking and testing, and knowing that each facet therein can fluctuate, in turn delivers you a little peace.
"Since becoming chronically ill, I’ve had to be particularly mindful of when worry has taken hold in my mind. The future is unpredictable.
"Worrying about it only makes you miserable in the present, and the present moment is the only place you are alive right now."
—Be Your Own Unconditional Ally: Everyone has bad days where they treat themselves unkindly or when living under this weight becomes too much.
We all overdo, flare and falter at times. What's key is recognising that this too, however deceptively permanent, also fluctuates.
“If you’re quick to direct negative judgment at yourself, pause for a moment and imagine how it would feel if you spent the entire day being friendly, caring and considerate to yourself. You can do it.”
—It’s okay to feel fed-up: “I often say it’s okay to be sick of being sick. A bad day is just that. Tomorrow, you can start over. And if it’s a bad day too, there’s the day after."
—Don’t Feel Bad if You’re Not Part of the Outside Workforce: "Taking care of yourself with chronic pain and illness is work! In fact, it’s often a full-time job.
"Never forget that despite your health challenges, you’re still a whole person. And don’t let anyone try to convince you otherwise.”
Love this! ❤💙💚 Thank you so much for posting this!
How many people's lives could totally and utterly implode and be filled with suffering, loss of ability, loss of dreams and be pain filled for years on end, and then have to listen to 'cheer up' or you look fine or are expected to be stoic and silent? It's enough to drive many to the edge of insanity, me included.
Great post- it is so crippling at times- just finished mowing the lawn- what used to take me twenty minutes now takes over three hours with breaks- now I'm done probably for a few days - but I did it-
I had to learn many years ago to put what was the most important at the top of the list because it is unlikely that I will be able to do more than one or two of the things on the list. I can't say I don't still feel guilt because I do at times but I have at least grown to realize that not being able to do it all doesn't say anything about my character. I was the perfectionist, driven wife, mother, employee, etc. that thought I was only successful if I did it all. I first started to feel extreme fatigue in my mid to late thirties. I had a bad fall from a treadmill that damaged my pelvis and my right arm was so damaged by the time I stopped doing ultrasound that I would have the transducer slip from my hand during exams. I taught in the ultrasound field for a few years and tried to find help for the fibromyalgia but as many of you know there isn't much that helps. I then had a near fatal car accident that left my body and mind in very bad shape. That was thirteen years ago and what I was able to do was suddenly stripped away. I have struggled to deal with that all of these years and the loss of who I was before left me with problems with depression also. I have gradually learned to cope better but that need for perfection has come close to killing me. I can't be that anymore and have had to realize I am still worthy even when I can't do it all. For so many years I overdid it to such an extreme because it made me feel like I was worthy. It didn't matter that it damaged my body and took my health because if I didn't do the most I could I was not enough. I think so many women are like that now and need to be the best at all they do. It can be a dangerous place to go and you are enough no matter what you can or can't do.
My life is becoming a struggle too... everyday im faced with financial hardship because i cant drive now and cant hold down a job... and now i am epileptic... i feel so lost and alone....
My to do list is always only : be happy with what you can do! All the rest is useless and fuels negativity
Excellent article. It served as a reminder that I am not alone in this.
This is my day today. Trying to keep my head above water otherwise I may just drown in misery.
Nicky Shinas interesting read
Yes lord over the years it gets worser I told my husband about a month ago I'm not leaving the house the pain is so bad now until I can not sit or stand long if I set longer than 30-1 hour I'm in bed the rest of the day it's miserable I can sit in recliner with out a lot of pain I need surgery to take out s tumor and fix a tare and 4 rupture disc once that's fixed I will only have to deal with diabetes and high bp and nuropthy and auto immune diasese but I will be able to get out of the house and have a life right now and the since 2009 no life
OMG...I know those many imcompleted ToDo Lists... 🙁
"For someone living with chronic pain, Facebook can seem like a minefield," says Erin Migdol, editor of the Mighty Site.
"You could write an honest post about how you’re feeling, but would your friends respond with supportive comments and encouragement?
"Would they be confused because you “don’t look sick?” Or would they respond at all?"
Chronic pain, illness and disability aren’t always easy topics to talk about or share on social media.
This can be complicated by our wanting understanding not pity, on the one hand, and on the other, a taste of normal, and hiding the pain, much as we do in real life.
Sometimes when symptoms take over all else, we may disappear just to get through it. Other times, the pain, disability, and illness itself makes that decision for us, giving no means to communicate.
But with each extended or unexplained absence, the gap of understanding widens, and with it, we too may trivialise or simply gloss over the topic, and more so given how profoundly altered life is when always ill and in debilitating pain.
It's just so far removed from 'ordinary' life, with every decision we make resting upon the pain and symptoms, the consequences and unpredictable nature of each.
From what we need to prioritise, when much need be left undone when the pain flares or 'spoons' vanish, to how much recovery and preparation is needed for each act, even the smallest, most taken for granted or essential acts.
This and so much more, including our own inner feelings, from depression to the grief and ongoing loss, remains hidden.
"It’s understandable that many people choose not to write about it," says Erin.
"Facebook friends need to be educated about what living with chronic pain is really like, and you deserve an outlet to be honest in."
Just as in life, people only see you at your best (no doubt after a lot of preparation), you may only share the good times on social media, however slight, especially if you spoke about the darker side of illness and pain, and had a bad experience.
For others, social media is an essential connection to the world, and especially other chronically ill friends, and one wherein the details of a life unwell is shared, but like so many, many may have noticed healthier friends quieten or drift away.
One of the many ironies of living with chronic pain is that just when you need the support of those you care for most, those relations are challenged by the same cause of that need.
Though equally, many simply do not know how to support you or respond, and understandably so.
Gently guiding or sharing a little of the weighty burden you carry every moment, may help you release the build-up of internal stress, and allow your friends to understand, even reach out to you.
In the spirit of doing just that, Erin asked the chronic pain Mighty community to share a post they want to write on Facebook, but don’t.
"With more understanding of the struggles their friends go through every day, hopefully people who don’t live with chronic pain can begin to learn how to be truly supportive of those who do," adds Erin.
Here’s some excerpts from their responses:
“I smile and use most of my energy to be kind to everyone. When you don’t see me I’m more than likely in pain and struggling to get the simplest tasks done.”
“I am sick. I may not look sick. I may not act sick. You will see my laugh and smile and talk with you every day. But please remember that every day is a momentous struggle to be there for you in my life and work…
"Please think before saying I’m a bad friend or family member. Please think before saying I’m ‘always ill.’ Please think before questioning my days off work. I don’t do this on purpose. I didn’t choose this. But I choose to be happy.”
“I would rather talk about other things than my illness… To get outside of myself for a while. I might be fragile, but I want to feel normal, even if it’s for a few seconds.”
“Every day is an absolute struggle just to appear normal. Every day I wake up more exhausted than when I went to bed. It gets slightly better at the end of the day. Then I struggle to sleep because of the pain."
“I’m sorry if you’re sick and tired of seeing my posts about my health. Try to remember I am sick and tired every single second of every single day. And because of that I have zero social life. So sometimes getting it out there helps. If it bothers you, just scroll past. But if you care… leave me a few words of comfort.”
“I lied to you today. I’m not OK. I’m not OK at all. I’m exhausted. I’m in so much pain, I can’t think. I just need you to see through my lies. I just need to tell you the truth, but I don’t. You ask, and I lie.”
“Hey, I’m still here, I might not have been around lately, but I still care and I miss you.”
What would you want to share on Facebook but don't? I'd love to hear your thoughts in the comments below. <3
After 11+ yrs dealing with my pain and illness I still struggle w/FB posts on my personal page, concerning my health and how I feel! I have tried posting both passively and aggressively-with little to no response, I've tried posting heartfelt and honestly-with little to no response, I have tried posting using humor
-with little to no response. I know my friends and family are out there, bc they come out of their secret places when I post a precious pic of my Grand! While I am well aware she is MUCH cuter than I, where are all those friends and family when I am reaching out? They certainly are NOT reaching back! The very reason I turned to support groups!Those I have met there GET IT! They are also the most empathetic, caring, loving, supportive, and the strongest women I know! They are my tribe!
"I lied to you today". This brought tears to my eyes as it really hits home.
"I lied to you today"
Boy, do I get that!! Laura, Lurenda, Alisa, Donnie, Dawn, Shannon, Christa, Jane, Jackie, Frances, Heather, Julie, Debbie, Judee, Nora. My apologies if I missed one of you incredible, incredible warriors
It wont let me join
This is why it’s important to join support groups on FB so you can’t still post to others who get you and understand.
My family understands when I'm having a bad day. My friends are all about "you poor thing" when all I really want is acceptance.
Nope, it is better to just say nothing. IRL! No one understands, it destroys your life
I can relate to so many of these.
“I lied to you today. I’m not OK. I’m not OK at all. I’m exhausted. I’m in so much pain, I can’t think. I just need you to see through my lies. I just need to tell you the truth, but I don’t. You ask, and I lie.” .... This is me to a T. I lie all the tie I let my husband have sex even though what it feels like is battery and the after effects last for weeks.
“I can walk, but I can’t walk very far, and it’s always with pain and fatigue. I can stand, just not for very long," says Bree Hogan.
"Limited as my mobility is, I’m still made to feel like a faker. I don’t look sick enough. I don’t look disabled enough. I’m too young."
When someone living with an excruciating but hidden chronic Illness and disability is confronted and expected to ‘explain’ themselves for why they should park in a space so obviously for ‘disabled people’, it's hurtful, ignorant and offensive.
"When I pull into a disabled parking space, I get “the look” of judgement. Some even stare and shake their heads," says Di Cartwright.
"If pain is bad I use a walking stick, which helps, but, if my upper body is bad, I can’t use a stick. Every step still causes agony, but nobody sees that pain. They have “Why?” written on their faces, but they don’t ask, they just judge."
This is exacerbated by the damaging idea that disabled people are exclusively in wheelchairs (the actual figure is close to 8%).
"Many don’t understand what an invisible disability is really like for a person. Extreme fatigue, chronic pain, disorientation, dizziness, vision impairment, difficulty with mobility, cognitive issues, neuralgia…the list goes on and on," says Bree.
"Just because I don’t fit society’s view of “disability” or conform to how a sick person should look and act. The universal symbol for disability — the wheelchair — doesn’t always reflect reality.
"Painful, invisible conditions exist that entitle a person to a disability parking permit. Unfortunately, these invisible conditions are often assumed illegitimate by strangers."
"We are branded as fakers. Told over and over that we don’t look disabled enough to be entitled to a permit."
If we're out, it's already a rare gem of a 'better' day, so when then confronted or so obviously judged, it can tarnish that day in an instant.
"In our culture, we sympathise with those who are obviously ill or disabled, and we reserve righteous indignation for anyone who might be faking,” says Pendleton Wickersham MD.
When each step feels as if on burning broken glass, what are metres to a healthy person can be miles to someone with severe pain.
"A common assumption is that a disabled person is in a wheelchair, causing confrontation, hurt and conflict in the lives of many living with disabilities that don't always require a wheelchair but do require close proximity parking,” says Hayley Caferella.
Having a parking permit can be the difference between allowing us a taste of ‘normal’ life and facing huge painful consequences that then take that part of life away.
"People suffering from disabilities — that don't match the symbol on the parking sign — are often assumed illegitimate by strangers, regardless of a valid parking permit. Assumptions can be hurtful, especially when expressed as accusations and judgements.
"I have received disgusted looks, had people nosily examine my disabled parking permit, as though it is their business, heard stories from friends who have had nasty notes or strangers accost them.
"These are avoidable conflicts that are directly caused by incorrect assumption. Sadly, if there is no visible sign of a disability the person needing the parking space is often despised without trial."
In the eyes of the ignorant, a person who can walk isn't disabled, is cheating the systems that bind society and deserves their disapproval. Few bother to consider that the ability to walk is greatly hindered by distance.
For some that distance might allow hiking, for others infinitely less, and for a disabled permit, at least in the UK, that distance is less than 50 metres.
Though of course, just as our pain and symptoms fluctuate, so too does our ability to walk any distance. It is impossible to tell whether or not someone needs disabled parking.
A single trip may cause a flare that lasts from hours to days, add the stress from an ignorant confrontation, and the pain increases. Stress in every form exacerbates pain but the assumption remains.
"The answer to all this frustrating misperception isn't necessarily in educating people about every disability that they are blissfully unaware of, but in simply informing them that painful, invisible conditions exist," says Pendleton.
Much as we may feel upset, try to calm rising stress before it worsens the pain. Take a deep breath [resisting any urges to squash the ignorant soul] and handle this lack of understanding by letting it go is always the most healing response.
"Invisible disabilities are not always completely unseen, but they can make a person feel invisible" says Hayley. "I live with CRPS, mostly unseen.
"It is in my best interest to try and move as naturally as possible, this can mean I am seen to be walking normally, even though my legs feel broken to my confused nervous system.
"Please try not to assume that we are swindlers, frauds or fakes. Please allow us to be who we are without daily explanation."
People are welcome to my Blue Badge, if they could take my constant pain with them. Central Post stroke Pain, 24/7 no cure and nothing helps to relieve the pain.
My daughter is only 7 and we get the same looks. She is in her wheelchair part time due to pain and very low endurance/fatigue. She may go into the store running/jumping, but people don't realize that in 15min she'll likely be crashing and asking to go in the cart or whining to go home. I also have fibromyalgia so living with chronic pain is something I'm very familiar with and get looks for myself. People have an expectation if how disability should look, and so often people don't fit that. It's time society realizes there's many faces and trust that people are doing right by their lives with their Dr support. You can't get a permit without a dr signature, so why do people judge??
I have had back problems since I was 18,, People have called me fake pretty much all my adult life, I have a Degenerative Disk Disease ,, its all the way up my spine now, I cant walk very far without my hips locking up in severe pain.. I can't do a whole lot but I do what I can,. I will try and do my dishes, it takes me 2 hrs, I do a little,, sit down rest, and start again.. but I do them.. I'm proud of what I can still do,, to me if I'm walking normal, its a good day. Keep your heads up,,. their will always be ignorant people out there.
Well said! An example of the many statements made in this post stood out... "People suffering from disabilities - that don't match the symbol on the parking sign - are often assumed illegitimate by strangers...". The symbol is an example of physically visible illnesses and is likely how someone without a disability would envision and describe a person with a disability when/if ever asked to describe. The symbol is likely the most single piece of "education" individuals ever have received/ perceived as a disability whom has never experienced a different type of disability. With out cause or reason most individuals will likely go any further in educating themselves on the many types of disabilities visible or invisible. Simple put the "symbol on the parking sign" is likely the perception a person without or has ever experienced any other form of disability will have for a disabled person. In life we learn "another persons perception is their reality." Sadly for us whom are suffering from an invisible illness our single description - symbol - widely recognized is the "symbol on the parking sign". Loved this post and wish I could show this to many in my life in hopes it would change their perception of me, however the ones whom I thought by "default" (parents, family, close friends) would at least try to understand are as challenging to "educate/explain/accept". My love to all who are dealing with additional challenges in this already challenging world. Have a blessed life! HUGS!
The Little Mermaid, she smiled and danced and did not speak. No-one could tell, yet every step was pain, like being stabbed with knives and walking on broken glass. This old fairytale speaks of invisible illness to me as this is how I often feel.
LOVE this one. I hate all of the looks I get...I would gladly trade away my parking placard if it would mean I could get rid of my pain and dizziness.
Looks are deceiving...nobody can feel someone else's pain I know exactly what this like with FM 24/7..
Good read. And that should goes aslo for my province in the terms for permanent disability. I'm not conveying this correctly
Unfortunately, this is something I really relate to. Don't judge!! 😀
I know the feeling fm spondylitis scleroderma.
Considering half of America voted for Trump, it's obvious ignorance is wide spread. Also, these same people will never understand or care unless it effects them. After all they are the same ones looking to take health care away from the disabled.
Love it, thanks!! I am blessed that currently- my CRPS and it's location don't merit a handicapped parking space yet- hallelujah!!
“You constantly find yourself feeling guilty for things that are out of your control,” says Ally Teixeira.
When overwhelmed with feelings of guilt alongside the huge impact chronic illness and pain already has on your life, it can be difficult to accept your limits, and not become caught in less than helpful thoughts or self-criticism that intensify these feelings.
“I feel guilty about everything," echoes Charlotte. "I am constantly letting down everyone around me. I feel guilty about not being the best mother I can be.
"I feel guilty about not being able to work full time. I feel guilty about being a bad friend and girlfriend."
The divide between who you were and what you can now do seems to widen with each passing year, increasing these feelings.
“Guilt is something that I have tried hard to scale down since chronic pain started, and I think many of us are haunted by this," says Dina Andersen.
"Guilt about canceling because of a bad day. Guilt about time in bed instead of doing a thousand important things.
"Guilt about doing something fun even though we knew it would increase the pain. Guilt about not coping."
Though of course guilt comes when we have the power to alter our circumstances, whether keeping our word or meeting the expectations of others, or indeed our own.
"Guilt is not the problem; more often, our problem is the shame. Shame comes from a deeper place, a place where we feel flawed or defective," says Jules Saphiro.
"When we feel defective, we feel unworthy. This belief is not uncommon in the chronic illness community. I know from my experience that I will often say that I feel guilty when, I am learning, what I am feeling is shame."
When thwarted by disability and pain while living in our well world, it's unsurprising that feelings of guilt turn to that of shame or inadequacy.
“Chronic pain can be demoralising. Few people can relate to the experience of hurting all the time, feeling run down and out of energy, fed up with pain and exhausted,” says Columbia Pain Management.
"Shame about our bodies, our ability to heal, our ability to “fit in” and participate in life can be very destructive."
We, like the rest of humanity, want to live. When we cannot do as we long to, once did, or even said we would, others may not understand, and us, feel this guilt or shame, which can lead to being judgmental or hard on ourselves.
"I shame-bait myself constantly for being sick. I beat myself silly for things that are not my fault," says Jules.
If you cannot 'keep up' or your home is a mess when you once loved how clean it was, or if you adored outdoor pursuits but now find yourself housebound, unfit and unable to do the things you loved, these are incredibly hard states to endure.
Another source of these feelings is work; 'what we do' is such a grand part of our identity, it can feel like having that vast part of ourselves missing makes us less of a person.
"I think many of us have trouble at this point. We look in the rearview mirror and we see what was, and what cannot be again," says Jules.
"We see the new road that illness has taken us down, and while what has happened is change, we may see failure."
You wouldn't be human without these feelings, and yet we must find ways to live in spite of it all.
"We must love ourselves, all of us, though often we are our own worst critics," says Jules. Be patient with yourself, gentle with the flow of feelings.
Remember the ebb and flow of this process, and try to not become too attached to any single state or thought, which can have the effect of exacerbating them.
Wherever you rest your focus expands that focus. So it follows that we need to find all we can to support ourselves.
"When we experience chronic physical or psychological imbalance, periods of anguish and anger cycle into periods of acceptance and joy," says Jules.
Even though we may feel our body has fails us, try to respond with self-compassion — no matter how hard it may be initially — which has neuroplastic benefits, while talking to yourself in a kind voice has a soothing effect on your entire nervous system.
And appreciate what you can do, including survive chronic pain and illness, which alone is huge.
"Enjoy the ride as much as possible in spite of the limitations that come with the condition. Sometimes that means spending my energy on friends or a whole day in bed," says Dina.
"It also means that it is OK to give up once in a while, when the pain is consuming — or when you feel hopeless and view the whole world as unfair.
"Rather than blaming ourselves for what we did not get around to, maybe we should be proud of ourselves. Because it is a challenge to live with this.
"And every time we do the smallest thing despite the pain, it means that we are still trying.”