How to Cope When Chronic Pain Affects Friends, Family & Social Life

Look At Her!

When our lives have been so devastatingly altered by chronic pain and illness, with not a single facet untouched, the support we receive from friends and family becomes all the more essential. But one of the many ironies of a life with chronic pain is that at the very time you need the love and support of those you care for most, those relationships are so often challenged and affected by the same cause of that need.

In the recent pain support survey that so many of you kindly did (*enormous thank you* ~ you can still find the survey here), many report that one of the greatest obstacles is not with our bodies but in relations with those closest to us. Our friendships and connections with family can make the difference between coping or finding ourselves feeling entirely misunderstood, isolated in our pain, by some, even judged for it.

Dealing with this on top of the symptoms can naturally be devastating for pain patients. Yet the lessons of living in pain run deep, and even the darkest times can be illuminated by the slenderest light. This post focuses on the effect of pain on our relations with others and offers a few tips on how to cope.

Changing Relationships

Business man closed into a glass jar concept on background

“Chronic illness throws a monkey wrench into our relationships,” says Susan Milstrey Wells, author of A Delicate Balance: Living Successfully With Chronic Illness. “We may seem as foreign to the people who love us as if we had begun speaking a different language. Our family and friends still want us to be the mum who works, the dad who plays baseball in the backyard, and the friend who meets them for lunch.”

“In turn, we want to be treated as the same loving spouse, parent, and friend we always have been. A large part of the responsibility for making those relationships work falls to us. We have to educate our family and friends about our disease, allow them to express their emotions openly, and clearly state our limits and our needs. Also, we have to expect these changes to be unsettling.”

Chronic Pain and Socialising

Young woman depression isolated on black background

Planning a social life around chronic pain and illness is hugely frustrating for everyone involved and – for those who are not in it for the long haul – can be swift to dissolve friendships. If you’ve ever known someone who keeps on saying that they want to catch up but never commits, or a friend who is constantly cancelling on you at the last minute, you know how frustrating that flakiness is.

Yet in our ever-erratic, unpredictable illness, our chronic pain can make us mimic that flaky friend to perfection.  “On the one hand, we don’t want to over-commit to others and then have to cancel. On the other hand, we don’t want to unnecessarily isolate ourselves too much,” says patient, advocate and author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their CaregiversToni Bernhard.

“This constant need to assess what’s best for us to do is hard and exhausting work. In the end, because of the uncertainty of our symptoms, most of us must simply make an educated guess and hope for the best.”

Never Knowing How We’ll Feel

Depressed Teenager Man In Black

The ongoing uncertainty about how we’ll feel each day makes planning impossible. “It’s hard to make plans because we can’t be sure how sick we’ll feel or how much pain we’ll be in on any given day. Even after I’ve woken up, I don’t know how I’ll feel as the day progresses because my symptoms can flare at any moment,” says Toni Bernhard.

“In addition, resting for days in advance of a commitment doesn’t assure that I’ll feel okay when the day arrives. It took me a long time to even be able to begin to make peace with the uncertainty of my symptoms. It’s an ongoing challenge, that’s for sure.” Some pain patients also feel that others expect too much from them, so believe they are letting them down in some way if they can’t keep up, which leads to more unhelpful thoughts.

Cancelling at the Last Minute

beauty girl cry

Just as others are perplexed by the fluctuation in symptoms, especially the speed with which a flare can transform us from being happy and engaged with someone, to collapsing in a voiceless heap, we too are equally perplexed. We can do everything within our power and planning to see our loved-ones but there are times when it simply does not help, or the pain flares so viciously, we are entirely powerless in controlling it.

Only you know which decisions to make to best manage your symptoms. If you are unable to do something or have to change plans you’ve made with friends, it’s important to communicate this but don’t feel obligated to give long explanations or grand apologies, though I know that is natural. We obviously feel bad, sad, and upset but the subsequent guilt at letting another down will only serve to depress you.

One Event = Whole Day’s Preparation

A single event, such as seeing a loved-one means our entire day is built around that event. From waking-up, everything is considered and for many of us, we cannot do anything we want to before the event as it jeopardises it. So when we do have to cancel, it’s not just the event but an entire day wasted, us in pain, yet we were never able to even see that friend. This is frequently ignored, especially by those who get annoyed at us for being in pain and needing to cancel.

It’s complicated as we long to socialise, to see those we love but the depth of understanding needed to truly comprehend the constant evaluation, uncertainty and ongoing management of our pain, is only grasped by a select few. These friends are perhaps the finest of all as they do not get angry or feel put out if we must cancel at the eleventh hour, nor do they mind it if our plans are cut short because they understand that we are doing everything we can. It just doesn’t always go to plan.

Evaluating Everything

3 chart pain

When you look perfectly healthy but cannot participate in activities such as a short walk with friends or a party, explaining why is often difficult and always tiring. We naturally become exhausted explaining over and over why we cannot partake.

It also breaks our hearts when we keep having to explain that we’re not able to do something that we would truly love to, even if it was ‘just’ a walk with friends or a drive in the countryside. Though of course there is no ‘just’ about it when for the most part, you are stuck indoors because of your pain and illness.

Living with chronic pain and illness involves a constant evaluation of the impact that various activities might have on our pain, fatigue, and other symptoms. This painstaking (pardon the terrible pun), and meticulous pacing often requires difficult choices about whether or not to engage in an activity that others do without a second thought.

Not Knowing How to Act Around Pain

Lonelyness

“We may lose friends because we can no longer share a sport or hobby with them, or because we don’t seem to be as much fun as we used to be,” says Susan Milstrey Wells. “Sometimes our friends just don’t know how to act around us when we are ill.”

Being so misunderstood by loved ones and losing the intimacy once shared in formally close friendships naturally hurts. Human beings are social creatures. Our sense of who we are and our place in the world is forever influenced and redefined by the nature and quality of our interactions and relations with others. Yet chronic illness inevitably changes relationships.

Sensory Overwhelm and Brain Fog

African young woman suffering from headache

Another aspect of socialising with pain that becomes difficult, even impossible is trying to interact when the pain rises because of sensory overload and makes it impossible to think. The more people in the room the greater the stimulus on your nervous system, and consequently, your pain.

While you are trying to listen, engage, think of your responses too, any additional noise, people, and especially music can make brain fog and sensory overload exacerbate, making it painful physically and emotionally. The desire to have and maintain closeness in friendship and family is sadly made all the more impossible because of the very symptoms that thwart it.

Many pain patients, especially those with severe pain conditions that mostly leave them house-bound, naturally struggle to see, speak to, or socialise anything close to what we long to. Though it’s humble compensation, when we do connect, it does make it all the more wonderful, Skype too, is a beautiful means for those with pain to see their friends and chat.

Being Treated Differently

Attractive Man Looking Through Window Suffering Emotional Crisis

When you have an illness that is so hard for others to understand, others may treat you differently. Even those who fully support us can change in how they relate to us. We want to be treated as whole people, and adults, not ’the one with pain’ but may be treated like shadows of our former self, exclusively defined by our pain or illness, or worse as dependant children.

“I’ve had people talk to me as if I’m a child. There’s a word for this frustrating phenomenon: infantilization. The unpredictability of how we’ll be treated by others can be extremely stressful,” says Toni Bernhard. “Will they understand that chronic illness hasn’t turned us into children? Will they speak to us in a pitying voice? Will they shy away from meaningful interaction altogether, as if we’re contagious?”

Toni offers two strategies for handling this particular uncertainty: “First, I reflect on how even well-intentioned people may behave unskillfully for reasons related to their particular life history and their cultural conditioning. This helps me not to take their behavior personally. Second, I remind myself that, despite this illness, I know in my heart that I’m a whole and complete person; then I re-commit to making sure that’s good enough for me.”

Talking About Our Pain

African-american Woman And Male Talking In Kitchen

If we talk about our health problems, loved-ones may respond judgmentally yet in keeping quiet about our health issues, or the severity of the pain and symptoms, perhaps even acting ‘healthy’, we risk leading others to misunderstand what we can and cannot do. Additionally, by keeping quiet, we’re also passing up the possibility of receiving much-needed support, emotional and practical.

“How much you talk about your pain and other difficulties is a personal matter, affected by your personality, the situation, your culture, and the personalities and cultures of others in your life,” says Lynette Menefee Puiol, Ph.D. “For example, some friends might think it is not polite to ask how you are doing, while others think that not asking indicates that they don’t care.”

“There is a delicate balance between sharing enough so people will understand, and knowing that talking about your pain has a negative effect on relationships,” adds Lynette, who suggests having a ‘script’ prepared when you don’t want to say much, such as, “I don’t like to discuss the details, but thanks for your concern.” Instead of talking, some pain patients use a sign or a number system to communicate when pain flares-up or it is particularly difficult to speak.

Exceeding Limitations

Ill Woman In Bed Touching Her Head

The nature of invisible illness and our fluctuating symptoms can lead to an equally fluctuating level of support. Since others cannot see our pain, sometimes even those closest to us find it hard to believe that someone who looks healthy can have so many severe symptoms and limitations. We may be misunderstood or expected to exceed our limits by even those we love the most, no matter how much we explain that we cannot.

This of course is hurtful emotionally as well as physically if we do go over those limits. Yet sometimes even those we think understand show they do not. We might try to ‘keep up’ only to pay for it so dearly later but of course the flare-ups and recoveries are as hidden as our pain is. So that side of living in pain is also so vastly misunderstood, which can also affect friendships and relations with family.

Unpredictable Symptoms

Desperate Man Suffering Emotional Pain, Grief And Deep Depressio

Everyone with painful neurological conditions and invisible illness knows how tricky it is to manage our unpredictable symptoms and limitations but just as we struggle with it, our friends and family may think we are exaggerating our pain or mismanaging it, which may strain in turn friendships and relations with family.

Loved-ones who see us ‘able’ to carry out activities, though obviously oblivious to how painful these actually are, are then confused by our need to rest and recover, or allow that invisible pain to lessen. Oblivious to the pain involved, aftermath, or inability to repeat that activity, this creates doubt and may lead to their questioning of our pain, in turn affecting the closeness and connection in our relationships and friendships.

The swift climb from ‘normal’ pain to being entirely unable to speak because of a flare can also be perplexing to others. Of course not everyone reacts in this way. Some friendships are deepened through our illness and pain but if we are judged on something that is so out of our own control, it naturally makes us feel even more isolated, especially as the reality is so beyond the scope of our loved-ones’ own experience and therefore understanding.

Changing Needs, Changing Relationships

The world of the chronic pain patient, no matter the cause, shares the need to be understood. We don’t want pity but understanding. Not sympathy but empathy. When friends and family change how they respond to us it can make life with pain even more difficult. Even if initially our loved-ones respond with kindness and concern, that may change as time passes and we don’t ‘get better’.

Another way our relationships change is that we may rely on others in new ways, something that can be difficult to acknowledge even to ourselves, let alone in communicating those needs to others. We may feel embarrassed, flawed, or inadequate because of the pain. It’s natural to worry that others may be resentful of our needs because of disability and pain but that frequently leads to those needs not being met.

Compassion Fatigue

Stress Concept

Sometimes our friends and family are there for us only to slacken that support when things don’t improve. They may become frustrated in their role if they are a caregiver or a family member, or simply misdirect their own feelings about your illness at you, which is always hard. Your friend you went out every week with is fed-up of waiting, or your family stops asking how you are.

When even those you thought supported you get compassion-fatigue, or grow a little clipped or angry at you ‘never getting better’, take comfort in your own inner strength and remember that new people do come into your life, online and in person, especially now with so many online support groups.

Distance from Illness and Pain

Dark Despair

Watching a loved one struggle with pain often makes others feel helpless and uncomfortable. They may also be experiencing fear, disappointment and loss. These emotions can be powerful motivators. It hurts for us, of course it does, but denial can be their own means for coping, how ever hurtful that is to us. They may simply feel too uncomfortable to acknowledge our pain and ill-health.

Some reactions are also often complicated by feelings of guilt for being healthy and able to walk, run, get out, or simply unable to share aspects of their lives that they know you can now no longer be a part of. Remember that others have their own challenges and lives to lead, that everyone has their own battles to face but above all, keep in mind that others’ reactions usually have far more to do with them than with us.

Letting Go

I used to have a friend who was one of the kindest you could hope to meet. Yet when CRPS began, although the initial reaction was one of concern and compassion, the distance was evident. That grew to increasingly infrequent visits, until it became all too apparent that the pain made them too uncomfortable (as ironic as that sounds to us in pain). Their need to create distance was as they could not deal with it, and many people cannot. Illness, as perpetuated by our youth and health-adoring society, doesn’t sit well for many.

While some relationships are deepened by the challenges of chronic illness, we may need to accept that we must let others go. Letting go is a part of life but with chronic illness and pain that teaching acquires a whole new depth. Of course it hurts if someone you love leaves but for your sake, letting go is often the most healing action you can take. Just as our lives shift and evolve, we too change and grow, so do the people we share it with. Instead of focusing on the heartbreak of losing loved-ones to your chronic pain and mystifying illness, let go, have compassion for yourself, them too in letting go, and know that new friends do appear.

Self-Compassion

two hands making a heart shape in the sky done with a vintage r

“Ultimately, as we strike a delicate balance between our own needs and the demands of our most important relationships, we grow in self-awareness, creativity, and acceptance,” says Susan Milstrey Wells. “We can’t be sick successfully without learning to love ourselves, and when we accept our own limitations, we’re much more likely to let those around us be less than perfect too.”

Self-compassion attains a whole new height when it comes to living with chronic pain and illness. We are so frequently hardest on ourselves, and when we lose those we love, all the harder. Sometimes that loss, that separation from friends we considered for life can lead us to this dark and lonely place.

Remember that you are doing your best, you are dealing with incredibly difficult circumstances so be kind to yourself. Speak to yourself as if you are a friend of yourself, without judgement, without criticism, without drama. Having self-compassion means to fully be with yourself in awareness, much like a good friend, with the willingness to be a loving companion to your own pain.

Self-compassion also brings care and concern for ourselves; warmth, love, and kindness for our challenges too. It’s a gentleness within you that permeates with acceptance, unconditional love and intimate understanding. As author and Eastern teacher, Jack cornfield said, “If your compassion does not include yourself, it is incomplete.”

Finding Friends in the Spoonie Community

bear quote-2

One way to cope with the ongoing challenges is to make friends with others who truly understand those that you face, on a day-to-day, moment-to-moment basis. Finding others who are suffering with similar symptoms is nourishing and connecting with others who live with chronic pain can provide much comfort. Although they may have a very different illness or condition to your unique combination, they have the ability to be empathetic, encouraging, and a great source of support precisely because of their direct experience.

Yet just as the night is darkest before the dawn, so too can the sadness in our lives be lifted by new people who come into our lives. If you are reading this after being recently diagnosed and fear the loss of friends, take heart in the fact that so many new people will come into your life; brave, inspiring, beautiful, compassionate people.

Some feel their friendship circle actually expands after a diagnosis, or, perhaps more vitally, if you reach out to others in pain online, or in support groups. The capacity for human connection is something that even chronic illness and pain cannot take away.

Feel free to share your thoughts in the comments below or in the Guest Book. ♥

You can also sign-up to the Princess Post and receive a free Flare-Up Toolkit here:


Princess

Gentle hugs x

You May Enjoy:

How Chronic Pain and Illness Fan the Flames of Uncertainty | Psychology Today

Chronic Illness Friendships: Do’s and Don’ts

Have you lost friends when you acquired a chronic illness?

Tough Choices You Face When Chronically Ill or in Pain

Use “Paintracking” to Help Manage Chronic Pain

The Back Pain of Back to School

Genes to the Rescue for Those with Chronic Pain

What The Pain Specialists Are Agreeing On, Or Does It Make Any Difference

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Comments

  1. C.H. says

    Thank you for this read. It is so very true and applies to my “Chronic Leukemia World”. I could relate, and I agreed, throughout the whole read. So sad, but true, all of these situations have happened to me. Right down to my own parents, not asking how I am. My Chronic Myeloid Leukemia, is a very, very, lonely disease!!!! It’s nice to read something that is so clear to me. Thank you.

    • PrincessPrincess says

      You are so welcome. I’m amazed at how much this piece resonated for so many but equally, saddened that this truly is our universal experience of chronic illness and pain. It’s lovely to have you here though and I hope you find comfort in these pages. ♥ x

  2. says

    I am certain you probably have mentioned this somewhere, but the few things that get me are:
    1. Doctors who park compassion at the door, who still think that our condition is about our weight, our “advancing” age, being female, goldbricking, or worse, agree with the DSM-5: we’re just nuts.
    2. Family and friends who keep asking: are you feeling any better, yet? Chronic pain doesn’t have a day off, nor an easy fix, yet there’s a hope by them that “are we done, yet?” They want it over with.
    3. Those who send us “instant fixes” believing that our pain (whatever the brand is), will simply go away if we stop/start: eating foods that are “x” (fill in the blank), drinking “X’, that will relieve all pain instantly! Your problem is; (uh, oh, watch out) “x”….in any case, chronic pain isn’t a quick or easy fix, that most of us have tried just about anything in hopes of healing ourselves, rarely does any of this works, but it is the absolute “zeal” that worse, because if you DON’T try what they want you to, it’s a ‘sign you are malingering” (no, it’s a sign we’ve tried it, and it failed to produce any relief, usually).

    Thank you for your blog, sharing it on @The Many Faces of Fibromyalgia, the website listed above.

    • PrincessPrincess says

      Ooh yes *nods* definitely, yes *nods again* *and again* I’m sure that everyone with chronic pain can relate to every point you make Mary, so very true. Pain never has a day or even a moment off. I find it especially hard when if recovering or even flared-up and unable to do anything but lie down and wait for that pain to lessen, healthy souls (not all but some) think that must be relaxing when it’s the hardest thing in the world. Relaxing in a bed and being unable to leave a bed because of pain are at opposite ends. Thank you for your great comment and for sharing it too. 🙂 x

  3. Miss Micheal Hodge says

    This was an awesome blog post! I learned something new about my own journey thru chronic pain. Sensory overload! I suffer from this in a big way! My anxiety grows and in turn my pain grows till I leave or burst into tears. I now have a sort of phobia of large grps of people and places that are loud and crowded. The only way I’ve been able to deal with it so far is to just not go. But I miss out on a lot of life and happiness! 🙁 I’m just not sure what I should do about it. I’ve tried to go to church which is one of my favorite places to be. But I end up out in the car trying to sleep waiting for my parents. It all feels so complicated. Thanks for sharing and for listening! 🙂 God Bless you!
    Sincerely,
    Ms. Micheal Hodge
    37yrs old
    and dealing with: Interstitial Cystitis, IBS, Narcotic Bowel Syndrome, GERD, Chronic Pelvic Pain, PCOS & Endometriosis, Fibromyalgia.

    • PrincessPrincess says

      Thank you for your comment Micheal. It is so hard when sensory overload makes our pain soar. It’s not only heartbreaking but also incredibly hard to explain. When you say you cannot attend an event or do an activity as there will be people there moving around you, or music and loud noise that sends your pain from just about manageable to impossible to speak, it’s rarely understood but is all too real for those of us with central sensitization and sensory overload. What you said about it being anxiety-inducing and you too fearful of crowds and people is a perfectly natural and human response. No one wants to be in pain, and no one who lives with pain wants that pain to worsen. Crowds do this, and it’s so incredibly difficult. Personally, on the rare occasions, I pack wax ear plugs, an MP3 player too, sunglasses and an eye-mask (fully aware I may look ridiculous 😉 but hey, it’s pain we’re talking about here), also many find that little breaks help them if you can escape or lie down away from the hectic area, allowing your nervous system to calm a little, though aware that is not always possible. Hugs and blessings to you too, thank you. ♥ x

    • Melissa says

      I understand completely. I feel the same way sometimes and you were able to verbalize it. Thank you. You’re not alone. Xoxo

      • PrincessPrincess says

        Thank you for saying that, Melissa ♥ So important to remember that, thank you for reminding me. Gentlest hug ♥ x

  4. Shannon says

    wow thank you have put into words a lot of how I feel except I would add my family have not been much help throughout even when it was thought I would die I think that for me is the saddest part and learning that I can not rely on them the longest lesson i am learning I keep hoping but I am now realising that will never happen I’m a slow learner.

    • PrincessPrincess says

      So pleased you enjoyed this Shannon. Please don’t be hard on yourself. It’s entirely natural to keep believing your family will help, even through all the evidence to the contrary. When we realise that we cannot even rely on our family, the very people who are meant to protect and support us, to help make our lives easier or even possible at all, it is the worst kind of teaching. Yet though heartbreaking, I think an acceptance of their reaction, and also a letting go of the hope they will alter their behaviour and help you, is also the most healing approach. Of course that isn’t easy but some prefer to ignore, or trivialise or even reject, even when they are family but it’s always more about them than you. The online community and support groups too can be immensely helpful and I hope you find the support you need. Gentle hug. ♥ x

    • Mikell says

      Thanks for sharing. I too have 3grown daughters who have left my life and often think I’m making this up. I suffer and I mean suffer with CRPS. The pain is so terribly bad that I have thought of suicide. I take a step back and know that I couldn’t do that to my family. A real Delema.
      Thank you all for this forum

      Mikell from Hawaii

      • PrincessPrincess says

        Mikell, I hear you. Sending you loving thoughts right now. It’s indescribable, so relentless, truly wish you weren’t going through this but it’s a whole other kind of pain when on top of dealing with it, we’re also surrounded by disbelief from those we love the most. I know that it is so difficult because we do not want to end our own lives, we only want to be well, healthy, pain-free, or even just in less pain, with less disability. Though I know it’s impossible sometimes to see any kind of hope, any light in the darkness but you’re right when you say about the effect on your family. Aside from the obvious tragedy (please stay), loved ones can never truly grieve death from suicide. When you cannot make it stop, when you have to live with it, that is an equally difficult position because you’re caught but speaking as somebody who has been through this, for I wouldn’t dare say any of this were it not for direct experience, even the darkest times do change, even the smallest most shrunken life can expand a little, but above all, you matter. It may not feel like it, it may feel like your life has been stripped of purpose and replaced with pain. I know how it can all feel so utterly hopeless but from the subtlest shift to new connections with others who do understand, our lives can become better, we can even learn of things that help that pain, support each other, and that pain can even change. Know that there is far more research now than ever before and hope that perhaps the first time. Wishing you greatest strength and the gentlest hugs. ♥ x

  5. says

    This is all so true I live this everyday, it the worst feeling. I have had this for six years now due to a surgery and removal of a non-cancerous tumor, which iam thankful for that, but the doctor touch a nerve and since then my life was changed completely. Nec

  6. Rebecca says

    Wow this article is amazing and mimics my situation with my family who just think I am attention seeking. I have now lost contact with my three sisters and am very worried my mum will follow suit. They all know I have MS, my mum has even taken me to a couple of my infusions but they choose to ignore the fact that it is always there and one of my sisters even compared it to her working and looking after her two children and said “you just sit at home in your own misery, deal with it”. I just wish they would take a little time to try to understand what it is like.

    • PrincessPrincess says

      Ooo I’ve had that exact comparison and found it shocking Rebecca. I had a friend in New Zealand who thought her being a mother of two was comparable to being bedridden with a severe and complicated pain condition (CRPS and fibro). It’s an astonishing and hurtful display of ignorance, and saddened your sister said that. When they think of being at home they may think of choosing to be there and in full health; being able to relax and be comfortable; do whatever they wish to. They are not thinking about how it would be were they imprisoned by pain, unable to cross a room or dealing with a long list of other debilitating symptoms that prevent all of these things. It’s a very different experience when unable to leave or ever relax and be comfortable, and I don’t know a single soul in pain and with disability who doesn’t long for the joy and luxury of a career and work. It’s even more hurtful when we may long to have families but cannot through illness. There are no breaks, ever. Were having children as hard and heart-wrentching as debilitating pain and disability, no one would want to be a parent. Your humble request for a little understanding is more than reasonable, and I so hope you receive it. However, some do prefer denial for whatever reasons they may have. I hope you find a little comfort in our community and on this site. ♥ x

  7. Josie O'Kane says

    You absolutely nail it!! Thankyou for doing this blog/site. You articulate so well how it is. I have chronic neuropathic pain including pudendal neuropathy for 9 years. Before I got it I could never have understood how it really is to live with horrendous pain and look totally fine. Everything you write is what we live daily. I dont expect my family/friends to really ‘get ‘ how it permeates into every aspect of every decision every day. It’s enough that they know I have pain. I have learned to ‘own’ the isolation and ‘difference’ of all the little nuances that you describe so well. ” Princess in the tower” is a great title by the way! As the years have gone on, and you have to let go of so much of your life, it sure does feel like it!!. 🙂

    • PrincessPrincess says

      Thank you for your lovely comment Josie, that means a lot. I agree, direct experience is the only way to truly understand it, others can at best only grasp it intellectually. It is of course sad when they do not however, and everyone’s experience varies but throughout each, the most beneficial thing we can do is to let go and be kind to ourselves, especially as the years, or even decades roll by. I love that you like the title too. 😀 Gentle hug ♥ x

  8. Sarah Sowell says

    Oh how I love this. I’m sharing on my fb page mainly to try and get my husband and his mother to read it. My biggest problem is them not taking me seriously. Thinking I’m making up excuses, exaggerating, and just plain lazy. I can say something about not feeling good and I get back from my MIL “Yea I have a back ache. You just don’t understand because your not old yet” Nope, I don’t understand pain one little bit.. I’ve only had chronic pain for every minute of every day since before I was 11…

    • PrincessPrincess says

      Thanks Sarah, loved reading your comment. That age thing used to always perplex. When others used to say ‘you don’t know what it’s like being old’ (in reference to the pain), it would be far more accurate to say that we don’t know what it is to be young. To have the gift and freedom of a body that allows us to do all the things that characterise being young and enjoying life, dancing, going out and being able to walk, run, be free. It’s hard when others are critical when they truly have no idea of how hard it actually is. Wishing you far better days. ♥ x

  9. Paula-Eunice Poama says

    Reading this I felt as though all my thoughts & feelings were put into words!! Thank you sooo much for writing this! I could relate, living with a pituitary tumour is definitely a lonesome illness as people assume you’re fine based on your appearance. Its nice to know that there are people out there that REALLY DO understand.. *teary eyed*

    • PrincessPrincess says

      So lovely to read your comment Paula, thank you. Glad that it resonated, especially as no matter how much it feels to the contrary, you are not alone. (((hug))) Wishing you strength and connection too. Lovely to have you here Paula. ♥ x

  10. says

    I lost a marriage over my illness. I find it difficult to find accommodating work. Recently let go a week after disclosing my illness to my employer. I can’t prove this contributed, but you wonder. Not fun to have illness like and get over these issues. It’s tough.

  11. says

    I love that you mentioned Toni’s book How To Be Sick! That book saved me when I was at my lowest. Thanks for the great article.

    • PrincessPrincess says

      It’s a brilliant book. Love it too Jen, and happy it helped you too. Thanks for your lovely comment. ♥ x

  12. gary wells says

    What a fantastic article, so so true. People need to talk about this more. I will be sharing

  13. says

    I found what I read to be spot on.Well people just have no idea of what it is like to live in constant chronic pain.C.R.P.S.People seem to think you’r just relaxing at home and not working!! When nothing could be further from the truth. What i wouldn’t give to be able to get up in the morning after a relaxing evening with friends and go to work!!!Two big problems there,first relaxing is near impossible and so is working when unable to spend more than an hour on my feet.Thanks to this site i can tell myself i”m not alone and not crazy.Thank you.

    • PrincessPrincess says

      I’m so pleased it resonated for you Andrew. Sometimes just knowing another who shares the same challenges can give a rare kind of strength. CRPS, absolutely. Never would have, could have believed such a thing existed, and I agree, in spite of that pain being so relentless and severe, the additional pain of losing our lives, careers, and having so many hopes and dreams dashed can be almost as difficult to cope with. I’m yet to meet anyone who doesn’t long to work. It’s a blessing so easily taken for granted by healthy people. The misjudgements of our ‘free time’ I’ve learnt to just ignore or let go of. Those who do empathise and support you are like gems but your energy is far too precious to let any ignorance hamper with what you know to be the truth. You’re not alone, far from crazy and it’s fantastic you are here. ♥ x

  14. Sarah says

    I’ve felt for a long time so isolated, even in a room full of people. This blog is amazing! I am also a Princess in the tower, imprisoned by MS: unable to even walk across the room. Frustrated by people thinking that if I had a ‘lie-down, I would feel better. Acting ‘healthy’ but feeling terrible for fear of being a bore. Keeping a smile on my face so I don’t bring the mood down. Thank you for making me feel that I’m not actually alone. I read your blog with tears streaming down my face.

    • PrincessPrincess says

      Sarah, so moved by your comment, thank you. It breaks my heart to know you’re a princess in her tower purely because it’s from that place of understanding but equally that unites us in strength. I’m very happy, however, that you’ve found comfort in this blog and hope you continue to. That smiling through the pain can be so exhausting but we do it anyway. You’re not alone Sarah *beams love your way* ♥ There’s so many of us living with such invisible illness and debilitating pain and I do so hope even just thinking of that — of us all — also doing as best we can manage, brings a little comfort too. Delayed but not diminished gratitude for your kind words. Gentlest hug ♥ x

  15. Randy Puaatuua says

    It’s 4am and I’ve been struggling in pain for a few hours and I found this wonderful article. It’s very enlightening and resonated deeply in my experiences with my newly diagnose spinal disease. My wife barely shows me compassion, maybe a few times here and there but I now understand more about how my pain makes her feel maybe helpless and she may not feel comfortable talking about it since there’s no way for her to help me. I was beginning to feel abandoned on a terrible island of loneliness. Thank you for helping me understand.

    • PrincessPrincess says

      You’re so welcome Randy. I wish it didn’t resonate but pleased you found some comfort. It’s the hardest thing because though we are of course hurting physically and emotionally, disabled too, sometimes that distance isn’t always a reflection of the love of those closest to us have for us but their own struggles, fears and losses because of this unwanted guest of chronic illness and pain, which has so altered your lives together. It can be incredibly isolating and of course isolation leads to a lot of thinking, and a lot of thinking can lead to a lot of ‘conclusions’ or our own questions, fears and doubts. The finest advice I was given on reconnecting was to think small. Tiny things that you share and can connect with. Even something so seemingly innocuous as a comedy film that you both giggle at can bring a little relief to what may have become a very difficult existence. Obviously it’s far greater than that but she’s with you, which speaks volumes. Thank you for your kind comment. You’re not alone, though I know it can so feel that way, and it’s lovely to see you here at the Tower. ♥ x

  16. says

    What an excellent and extensive article Princess!! What’s helped me to maintain strong relationships with friends and family through years of chronic illness is finding that delicate balance between sharing how you feel (the good and bad) and having a nice time together. The ones closest to you should be able to understand what it feels like for you and what you can and cannot do. That calling off and appointment at the last minute isn’t personal and you’re sad about missing out too. But making an effort to listen to their stories and problems (even when trivial in comparison to yours), showing you’re interested in their lives and finding ways to have fun together are important too. I’ve been lucky to have supportive friends and loved ones in my life who don’t mind having drinks early in the evening instead of going out all night, having lunch instead of dinner or coming over to my house for tea & chats when I can’t go out. But I do know the heartache and challenges of having a social life with chronic pain/illness all too well. So thank you for writing this for everyone who needs it!

    • PrincessPrincess says

      I loved reading your comment on this Jennifer, so very true. Everyone has their battles to face and it is all such a delicate balance. Though I do think facing a lot of challenges does make people more compassionate, it does take such a depth of understanding for our loved-ones. I’m so happy you have a strong support network and you’re so welcome, of course 😉 Wishing you better days. ♥ x

  17. Tom says

    Thank you for this excellent read. I often feel like I’m the only one who goes through life in pain all the time. I feel that family and friends sometimes don’t understand that I can’t do the normal things I used to be able to do. I look normal, sound normal I try to function like a normal person because I don’t want to hole up and lose out on the fun activities with friends and family. But the truth is I just can’t do all the things I once did. Another problem we face is all the drugs and their side effects. It affects everything from sexual performance to passing out to being dizzy all the time and don’t leave out that zombie feeling. The pain wakes me up in the night and come morning It’s all I can do to get up and get my drugs in me. I’m going to show this paper to my wife, family and friends. Thank you!

    • PrincessPrincess says

      You’re so welcome Tom. I’m so glad it resonated for you. The great divide of understanding is often one of the the hardest parts, obviously aside from the pain itself, the losses too, but of course we must go through that while having such a degree of disbelief. The side-effects of meds is awful, and especially upsetting when cognitive function is also so drastically affected, or that balance between taking enough to reduce the pain ‘enough’ without completely losing all power of communication and thought. I do hope this helps your loved-ones understand more deeply. Wishing you continued strength and far more good days than bad. ♥ x

  18. Debra says

    This post described my struggle to a “T”! Every single aspect of struggling with Degenerative Disc Disease in 6 vertebrae along with Severe Fibromyalgia and Complex Sleep Apnea! Thank you so much for addressing these issues head on! The post gives lots of good, positive help too!

    • PrincessPrincess says

      You’re so welcome Debra, really glad you enjoyed and that it resonated for you. Wishing you continued strength and courage. Gentlest hugs ♥ x

  19. Carrie says

    I have been on disability with a chronic pain syndrome resulting from endometriosis and chronic pelvic pain. It’s only in the last year that I have been reaching out to others going through similar and I just want to thank you for this post. I have a very difficult time talking about being ill because many people are uncomfortable with the topic or dismissive because I look normal. I have been having a pity party the last few days on account of having flare ups and migraines and now a sinus cold and a flare up for the last few weeks. The isolation can be brutal when you have a chronic illness let alone an invisible one. While I am fortunate to have a loving and understanding partner now, my disease journey led to divorce and loss of most of my friends. I never figured out if my friends disappeared because it was too much effort to keep inviting me to functions I rarely could attend, or if they felt the need to exclude me post divorce as my ex and his current partner and baby seem to have maintained friendship with them. I probably will never know, but it still stings, despite letting it go as best I can. Anyway, I do count my current blessings and this journey has for the better, taught me to never take friendships for granted. The people who have stuck by me have been amazing. I just wanted to say thank you and I will check out some of the book recommendations you’ve made.

    xoxo

    • PrincessPrincess says

      Gentlest hugs Carrie ♥ So pleased it resonated for you, and keep me posted on how you get on with the books/links. I agree that those who stick by are true angels but also that it’s a huge learning process, a process in which you should never be hard on yourself for or even blame and question why others may have distanced themselves. Obviously it’s human to but equally we can never control what’s outside of ourselves (nor inside when it comes to pain!) but we can always shift our focus to lighter places, and control our reactions to those external circumstances. The journey may have been hard but counting the current blessings is the finest way to live of all. Letting go of the struggle too, and being present. Wishing you continued strength and gentle hugs ♥ x

  20. Joanne heron says

    What a huge difference it has made to me reading this. I have lost touch with friends and family due to my illness (thoracic outlet syndrome ) I am continuing to struggle to get up in the morning. But I’m blessed to still be working, although I fear it will not be long before that is no longer possible. Making meals and housework impossible for me to even think of when I get home. I go to bed the moment I get in and stay there for two or three hours crying in pain but I’m determined I’m not giving g up yet. My family think I’m just lazy and ignorant but it’s too much to keep explaining to them every day.Thank you for making me feel I’m not alone. God bless you

    • PrincessPrincess says

      You’re so welcome, Joanne. So glad it resonated for you but sad you are going through this too. You’re not alone. Sometimes it’s just so far beyond healthy’s people’s understanding — even healthy people we love — that they judge or hurt us, even when we’re hurting so much already. You know you’re not lazy or ignorant, or any of those things. I love your attitude too. Gentlest hugs and hope this week is a kinder one for you. x

  21. says

    Dear princess,
    This article is great, thank you for paying attention to this difficult aspect of having chronic pain that makes it so much harder to cope with the pain.
    I’m a fysiotherapist and a chronic pain patient myself and I’m an advocate for chronic pain. The social consequences of chronic pain is my expertise. In the Netherlands were I live my books and workshops are very successful and I’m happy to say that I’ve helped a lot of chronic pain patients ánd their families.
    My books have recently been translated into English and available as e-books on Amazon. Please have a look at them: http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Ddigital-text&field-keywords=Coping+with+chronic+pain+Anna+Raymann
    I want to thank you for all the amazing work you do for CPPs
    All the best,
    Anna

    • PrincessPrincess says

      Thanks Princess Anna, I will and wish you all the best with them too. So glad you enjoyed this piece. Gentle hugs ♥ x

  22. karen says

    Thanks for this awesome blog. I have systemic lupus erythmetousis as well as antiphosphilipid disease and this is exactly how I feel. Chronic pain and fatigue

    • PrincessPrincess says

      You’re so welcome Karen. Glad it resonated for you but sad too, as know how isolating pain and fatigue can be but hope these posts help you feel a little less isolated. Gentle hug ♥ x

  23. D'Ann Jacobs says

    I am so glad I found your website tonight. All of my children and friends left me. None of them speak to me and its hard living alone. My mom is in KY and trys hard to comfort me over the phone. But its still very lonely living alone and no one to talk to.

    • PrincessPrincess says

      So lovely to have you here, D’Ann. Thank you for your kind words. One thing I would advocate is joining online support groups, especially if housebound. These connect you with others who truly know what you are going through, who truly understand. You can also support others, and that’s a beautiful thing in our courageous community. I’m so glad you like the site, and hope that it helps you feel less isolated but do not lose hope, as even the darkest times can be lit my the light of a single new friend. Wishing you companionship and friendship in abundance. x

  24. Reenie says

    I have read many articles, searched many websites, seen by so many doctors! My point being this website contains more useful information than I have seen anywhere! I was in tears when I saw a link to your site, I am not taking anything prescribed for pain as I had a terrible reaction to Lyrica *nearly died* I gave up on traditional methods and have been doing over the counter pain meds with no relief as so many know, yoga helps, hot showers help, but the knowing I am not alone in this really does set my mind at ease. May you be Blessed abundantly for taking the time to share all of this information. Thank you from my heart.

    • PrincessPrincess says

      Reenie, so loved reading this. Touched, truly, and more so because no matter how isolating pain is, both in company and solitude, we’re not alone in this. So warmed by your words, thank you, and also for your beautiful wishes. Wishing you infinite blessings, and far kinder days steeped in joy, with less pain, more love, giggles (always those), support, and the heartfelt knowing that you’re not alone, not for a moment. ♥ x

  25. packerfan says

    One additional thing I struggle with is irritability and control freakishness. Feeling I need to plan and force myself to prepare for activities so far in advance or risk losing the will to go puts on so much anxiety and pressure on me that I’m a 24-7 anxiety ridden control freak and lose it whenever something even hints at going differently than I expected…which alienates people, makes me look like a crazy person, and reminds me how much I hate myself. It’s a cycle that never ends.

    • PrincessPrincess says

      Kelley, be kind to yourself. All you’ve said is entirely understandable. We don’t want more pain, it’s natural to do all you can to lessen that and pain causes anxiety. Have you seen this post?

      How to Cope When Chronic Pain Increases Anxiety—With Tools to Calm & Soothe http://buff.ly/22C3E64 Really hope it helps. Also, one book that helped me with my own feelings of self-loathing/failure/shame etc. was: The Gifts of Imperfection: Let Go of Who You Think You’re Supposed to Be and Embrace Who You Are by Brene Brown. Wishing you far kinder days with more calm and ease, much less pain and anxiety. Sending a big but gentle virtual hug ♥ x

  26. Lynne Ruth Dwyer says

    Chronic illness and chronic pain has alienated me from everyone I had in my life. They all ran away assuming that I would become their burden. Can there be anything more hurtful. Especially, when you know you would have beve been, and, in fact, had been there for them in their time of need. Providing emotional and financial support when needed. How can people just leave you to die in this uncaring world. No one knows if I have food in the fridge or how I’m getting to a doctor. I had two major abdominal/pelvic surgeries. The hospital wheel chaired me to the curb where a car service brought me home to an empty house. To care for myself. How is that not anxiety provoking. An ex friend told me to phone when I felt better. I’m facing more medical issues as are we all. This promise of longer life due to medical miracle machines and medicines does not promise pain free aging. Only in advertisements selling something are the people rosy cheeked, with a partner and smiling.

  27. Shelly says

    Well I thought it was just me feeling this way, I worked in the EMS field for 13 years then had a rafting accident and hurt my neck, still in the midst of figuring it all out non stop appointments, never sleep constant neck pain, headache 24/7,.
    Use to be a funny fun loving person, mother of two, family and friends disappeared, even the so called friends in the medical field, when I was there for a few when they were down!!
    Now I find myself getting very bitter and angry towards them all
    Person starts to think so what did I do???
    Yet when your doing great they love you!
    I totally relate to your write up and the comments on here:)
    Thanks:)

    • PrincessPrincess says

      You’re so welcome, Shelly, so pleased it resonated and you enjoyed it, though obviously wish you didn’t have to know this all first hand. Gentlest hug ♥ x

  28. leanna Burchell says

    I want to thank you so much for doing this study and publishing it, as I read through it I got very emotional, because I try to ignore so much of my pain and pretend I’m fine…and really you can’t keep repeating all your symptoms every time someone asks.I just say fine and keep smiling. After reading this I realize I need to work on my self compassion. Again many thanks Leanna

    • PrincessPrincess says

      My pleasure, Leanna, so glad it resonated. Self-compassion is a process I find, but a truly worthy one. Be kind to yourself ♥ and t’y for your lovely comment. ♥ x

Trackbacks

  1. […] a lot of pain, it’s difficult to socialize because pain makes it almost impossible to think. “The more people in the room the greater the stimulus on your nervous system, and consequently… I’m becoming less social these days than I’d like to. It’s difficult to engage […]

  2. […] From our most basic survival to fears of an uncertain future, and the choices that seem so far out of our hands, anxiety can come from a loss of control or independence, or fear of further losses, and increased pain, and disability, and how we might manage and cope, to even a fear of the next few moments, such is the unpredictability of chronic pain. […]

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