My Friends Get Real About What It’s Like to Be Friends With My Chronically Ill Self
I have wanted to write a thoughtful piece about friendship and chronic pain for the longest time. I’ve saved several drafts of half-written essays that were either entirely unhelpful or read like a journal entry. It’s a topic that I have a cacophony of feelings on, as I feel epically grateful to have maintained a few really incredible connections throughout my life. I’ve also lost a host of friendships, too, so I’m not immune to the isolation, the abandonment or the chronic loneliness of it all.
As the sick friend, I am hyperaware that life can, and absolutely, does go on without me. I struggle with balancing the self-care and the sheer need to connect. During rough times, I am particularly cloaked with extra layers of guilt. And shame. And suffocating self-doubt.
So amidst my waffling about how to approach this subject, I landed on the idea to move the microphone away from myself, and to let you hear from the experts themselves: my friends. I’m letting them remain anonymous, so their true opinions can soar without guilt or attachment, but I’d like to tell you a little bit about them.
The snippets that you’ll read below are from some of the coolest people I know. They are whip-smart, genuinely caring to all ends of the earth, and give my messy life so much meaning and dimension. I’m not sure what I did in this life to deserve them, but I’m willing to share their boundless hearts with all of you.
If you’re the chronically ill friend in the twosome, I hope you’ll gleam some comfort from their answers. Reading through their interviews reminded me that I have worth despite my challenges, and so do you. Keep going.
And if you’re new to a “nontraditional” friendship such as this, welcome aboard this rock-and-roll boat and hang in there. The journey isn’t perfect and it may be a bit prickly at times, but there’s nothing like it. Stick around for the rainbow.
Before we dive into the specifics, give me your general impressions about chronic pain and friendship.
“It’s exactly the same as having a friend without chronic pain!”
“It’s like having window-only access to a scary world that you can’t experience for yourself. Your friend is stuck on the other side and you only see glimpses, [like] when they have the blinds open. You don’t have to experience it yourself to feel the effects.”
“It’s a gift. [Your] chronic pain has helped to give me perspective on what really matters in life.”
“It reminds me that we each have our own story to tell.”
Let’s talk about the challenges. Be honest.
“Talking about health issues can be tough. As a friend, you feel kind of helpless. You’re not a medical expert so you can’t give advice. [If] you live far away, you can’t bring over dinner or dog sit. It’s so hard and makes your heart ache.”
“I struggle with feeling guilty that I don’t and can’t really understand what you are going through, and am often afraid that I may be doing something to make things harder without even knowing it.”
“The relationship not only requires more flexibility and forgiveness in scheduling, but it also demands honesty from both participants. This unique breed of friendship commands a level of authenticity that can be uncomfortable for a lot of people. When tough topics are a very big part of your friend’s daily life, those topics become an unavoidable part of your conversation. Because of this, it is nearly impossible to maintain a superficial friendship with a spoonie — it’s a 0-60 approach.”
“[I struggle with] wanting to check in on your health but not always knowing the right words or approach…or if you even want to talk about it. I’m happy to listen and try to understand, but I wonder if maybe you’d rather not go through all the details.”
What have you learned about life from our friendship?
“Over the past several years, my husband and I have faced infertility and pregnancy loss. During the toughest times, I found the support of someone who understood frustration, isolation and feelings of failure to be invaluable. While I would never wish chronic illness on anyone, it has been a part of an authentic, enriching friendship.”
“Sometimes just getting out of bed is difficult. And [so is] learning, recognizing and accepting physical limitations. But I have also learned the beauty in connecting with someone going through challenges, and finding ways to connect that might look different than other friendships.”
“Someone may appear to be functioning completely normally and without pain, and yet inside they are suffering, completely undetectable to those around them. I learned how difficult it is for those that are highly functioning while in pain to explain to the people around them that despite the tough face they put on to get through the day, that there is a lot they aren’t witness to behind the scenes.”
“I’ve gained a better understating of what day-to-day pain looks like lived out. Living with chronic pain gives people very unique perspectives on life and I find myself checking my attitude a lot through our conversations.”
What advice do you have for those that are new to a friendship, or are struggling to connect, with an in-pain counterpart?
“It may seem obvious, but just listen. I think anyone that is going through any kind of struggle just wants to feel heard.”
“Show up. Showing up can take many forms: food after surgery, gifts to the caregiving partner, hanging out just to watch TV, sending flowers, etc. Showing up doesn’t require an in-person visit. Show up even if you feel uncomfortable, or are afraid you will say the wrong thing, or don’t know how to be supportive. It’s the gesture that matters in the long run.”
“Ask the tough questions. The more you know about your friend’s unique challenges, the more equipped you are to help them. A topic you think might be uncomfortable to talk about is probably a topic of daily conversation in their world. Asking questions and opening up the conversation shows them you care and that you aren’t afraid to go to the uncomfortable places with them.”
“Be empathetic, but also acknowledge how strong your friend is. You can learn a lot about positivity and gratitude. Don’t be afraid!”
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The Mighty Video • Follow@themightyvideoNovember 5, 2019Ways Chronic Pain Affects Your Morning RoutinePeople share how their morning routine is affected by living with chronic pain. It can affect routine by adding or removing extra steps, or making simple steps feel more complicated based on how they feel when they wake up. Here’s what a few people in The Mighty community said how their pain affects their routine.Share25844SavePost
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What are you grateful and thankful for?
Let’s share your answers here with Our Group and you can help someone else in Our Community see all the little things that can give us joy in life right now.
And, discover how gratitude can change your life when you read below:
Harnessing gratitude boosts your happiness levels and those of the people around you.
You cannot talk about Joy without talking about Gratitude. Actively practicing gratitude.
Dr. Brené Brown even says she still has to bullsh*t it a little too sometimes in the practice of saying I am grateful – because it is a practice. But with this practice, gratitude becomes tangible-you can see it. It’s not an attitude of gratitude. It is a continued practice that you have to consciously, actively participate in the practice. You need to not just think about it, you need to say them daily, start your day with saying gratitude statements and throughout your day, every day.
Then you go through the day looking for it. She says it’s like magic. And I’ve found that to be true to with my own practice of gratitude.
It helps you appreciate the little things.
In the culture of thinking in scarcity, what happens is that we’re all chasing the extraordinary.
But zen can be found in the ordinary moments.
You can choose what you will focus on and what you will not focus on.
Zen is not something unattainable, it is all of the simple things that you choose to do each day while being fully present-immersed in that moment.
It is enjoying all of the moments that you create, that you choose to see, feel, hear, touch, smell that make you smile inside.
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Ordinariness—which our culture tends to see as disappointing—is considered the highest manifestation of enlightenment in many other belief systems.
We need to switch our relationship with our lives from perpetual dissatisfaction and rejection of what is and focus on gratitude for our multiple ordinary blessings. The variety of ordinary life is infinite and precious.see more ▾Share931SaveSee more from this community ▾
7 Things Healthy People Need to Know to Understand the ‘Pain Experience’
Chronic pain changes everything in life, most entirely invisible to outsiders. Many people do not seem to understand chronic pain or just how extensive its effects are, how exhausting always being in pain is, how displacing and uncertain, nor how hard that pain makes it to concentrate and think.
They cannot see that they have attempted numerous treatments, approaches and alternative therapies to heal and manage that pain, and know what therapies have worked or not worked for them, while the depth of loss and longing for our lives before it began becomes as constant as the pain.
There are so many considerations healthy people do not have, alongside symptoms themselves, the attitude of others, as well as our own complex inner feelings. The chronic pain patient wants those around them to empathize with their situation rather than be sympathetic, to have understanding, not pity, though sadly, understanding can be extremely rare. Not that there aren’t compassionate souls who support us, but because the “pain experience” is hard to grasp.
In the spirit of informing those who wish to understand, here are some things that can enable you to do just that to help people who have, often debilitating, chronic pain:
1. Those with chronic pain talk differently from those not in pain.
Those with chronic pain often talk differently from those free of constant pain. Many people forget that after many years of pain, we just want to appear normal — so we modify our behavior, and avoid letting people see just how much pain we are really in.
A numeric pain scale is used as a quantitative measure to identify pain intensity for medical professionals, with description of pain being on a scale from one to 10 (one being “no pain at all” and 10, the “worst pain ever felt”).
After many years of chronic pain and despite it often worsening, this scale may change and shift, instead being more reflective of individual tolerance to ongoing pain, especially in progressive conditions. What was once an eight is now a six, for instance. People can only measure pain against the most pain they have experienced.
Yet for most who may have experienced pain at this level, this was acute pain, a different physiological process, and even if was severe, it was likely still brief when compared to constant pain of CRPS, for example. This makes such subjective understanding by those without chronic pain all the more difficult.
2. Never assume the chronic pain patient is not experiencing pain when they say they are fine.
Hiding the pain due to lack of understanding in others, protecting others (from feeling uneasy or helpless, after all, no one likes seeing someone they care for in pain), or just to fit in is a natural response to ongoing pain. Accept that words are often inadequate to articulate how the chronic pain patient is feeling.
Recall a time when you were in pain, then multiply the intensity and try to imagine that pain is present 24 hours a day, every day, without any relief in sight. It’s hard to find the words for that kind of pain or experience.
3. Respect the person with chronic pain’s physical limitations.
With chronic pain and invisible illness, the uncertain nature of our fluctuating symptoms can be as confusing to us as patients as it is to those around us. Our mobility, pain levels and ability to cope with movement can be erratic, unpredictable, and frustrating for all involved.
Pain patients do not know from day-to-day how they are going to feel when they wake up and each day has to be taken as it comes. In many cases, they don’t know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.
Even with the most meticulous planning, sometimes the pain flares or is just too fervent. Being able to stand up for three minutes doesn’t necessarily mean we can stand up for 20 minutes, or an hour, or give you a repeat performance.
Just because we managed to sit up for an hour yesterday, does not mean we are able to do the same today.
4. Understand the difference between happy and healthy.
When you have a nasty bug or an injury that suddenly hampers your life, you may feel frustrated and miserable. Chronic pain patients have experienced pain from six months to many years, even decades, without a break. That changes you. It changes how you respond to the pain, as well as how much and how well you hide it.
Pain has caused us to adopt coping strategies that do not necessarily reflect the real level of pain we are feeling. When we see our loved ones, we are happy. Happy is not the same as healthy, but we may choose to hide our pain for others as well as ourselves. Sadly we are often misjudged for it, especially when they rarely see how excruciating and debilitating the consequences are afterwards.
Many struggle to believe you can be in severe pain if you are happy, laughing or simply not voicing the pain in the same way someone without chronic pain would expect, but voicing it does nothing for the pain, in fact focusing on it can make it worse, and only serves to make others feel uncomfortable. Laughter is also one of the most enjoyable ways to manage it and cope.
Respect that the person who is in pain is trying their best. Associating illness with exclusively feeling unhappy or thinking it impossible to be in pain and still find joy is a great source of misunderstanding.
5. Be patient.
If you’re impatient or want someone with pain to “just get on with it,” you risk laying a guilt trip on a person who is already struggling with pain, undermining their determination to cope.
They may have the will to go out or engage in another activity, but have neither the strength nor the coping capacity as a result of severe pain. A chronic pain patient may need to cancel a commitment at the last minute— please do not take it personally.
Instead, always remember how blessed you are to be physically able to walk, sit, stand, run, dance and do all the things that you can do and how sad the patient is at having to cancel [again] due to severe pain, illness and disability.
It’s important to remember that the pain is in charge, not your loved-one or associate. While you could get annoyed, it shows a complete lack of understanding of chronic pain and all they endure on a moment to moment basis.
Always be understanding if they say they have to sit down, lie down, stay in bed, or take medication right now. It means that they have no choice but to do it right now. Chronic pain does not forgive or wait for anyone. We’re already hiding immense pain, and when it flares up, it becomes unimaginable.
6. Noise, crowds and other stimuli can make pain skyrocket.
Another consequence of chronic pain altering how we process pain is that noise, crowds and other stimuli can cause intense increases in its severity.
Sound can cause pain and when that becomes noise, it intensifies. When then fused with all the other stimuli from a crowd, it can open the pain gates and overstimulates our nervous systems, making the pain skyrocket, in turn exacerbating brain fog, so we’re left even less able to explain… or escape it. It can become so complicated, we may avoid it entirely, no matter how rare or deeply we long to go out.
7. Be helpful.
Much as holding onto our independence is so dear to us, frequently we need support in more obvious ways. Living with chronic pain means we depend on healthy people to assist us or visit when we’re too pained-up and sick to leave our home.
A general “let me know if you need anything” is obviously compassionate and deeply appreciated but tends to result in our not accepting it, being too proud or even feeling shame for needing this help. But a specific question, like: “I’m going to the supermarket, can I pick something up for you?” is essentially the same offer but one we’re more likely to accept. It also doesn’t leave us feeling indebted in ways we cannot repay. We may need help with shopping, cooking, cleaning, getting to the doctor or collecting medication. Some may need help with their children. Changing bed sheets, for instance, is an immense or impossible task in pain but one so deeply appreciated.
You can be an immensely healing link to the normalcy of life and support them.
Being able to talk about the pain openly with others is important — it’s such an all-encompassing part of our lives — and not talking about it or defining us exclusively by it is, too, and it helps us feel less isolated or distanced by the pain. It offers a little taste of normal, which is, after all, what so many living with chronic pain and complex illness truly long for.
This blog was originally published on The Princess in the Tower.
Jo is a writer, CRPS warrior and founder of The Princess in the Tower — a chronic pain healing portal to offer comfort, strength and support to fellow pain and chronic illness warriors — but she’s also been a magazine feature writer, a trumpeter in a jazz band, a traveling vagabond, a journalist, an artist, activist, published in the broadsheets (for the right reasons), almost eaten by a crocodile (for the wrong reasons), a volunteer in India, lost in the Himalayas, found in the Mediterranean sea, a poet, purveyor of love and lover of life, and a skydiving, rock-climbing, scuba diving, mountain-biking, fitness-loving 22 year old when CRPS arrived with a jolt. After clinging to her much-loved career like a mosquito in the breeze until the painful neurological disease became systemic, she was bedridden for 8 years. In a life of such extremes and from that bed, the princess in the tower was created. She’s never stopped learning potential healing modalities, inhaling books and courses for air (with diplomas ranging from nutrition to acupressure to psychology to Traditional Chinese Medicine to chronic pain management), for the silver lining in all of this is in helping fellow pain warriors. Knowing just how hard it is to live with constant pain and complex systemic illness, she is fuelled by a deep passion to support others while managing her own condition through a fusion of practices alongside her writing, art, yoga, meditation and unquenchable thirst for books. Jo does her best to balance her projects, passion for writing and helping others with her obvious deficit of spoons, and despite being frequently floored by the capricious nature of CRPS, refuses to let it still nor stop her quest to support other kindred spirits, wayward princesses and pain warriors. She also shares offerings for creative souls at her sister site, Inspire Portal which fuses writing and creativity with ancient healing practices. She is also writing her first historical fiction novel.jo-malby