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The 'Chronic Sorrow' You Feel When Friends Disappear After Your Child Falls Ill

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I have a 13-year-old daughter named Bonnie. She is beautiful, funny, and grumpy — all those things a teenage girl should be, but she also has a chronic illness.

I had no idea our lives would pan out like this. She was an average kid until around the age of nine, when some annoying-yet-manageable niggles turned into complex health problems and a chronic pain condition.

Unfortunately, there’s no single cause or clear diagnosis that sums up Bonnie’s health problems. She’s under the care of four different departments at Great Ormond Street hospital and has required frequent, sometimes lengthy, hospital admissions and four surgeries so far. This year we have spent a total of 12 weeks in hospital, and we average around one outpatient appointment a week.

Bonnie has not been able to attend school in 16 months and I, thankfully, work at home. We are a close little unit. Planning any sort of life around a chronic condition is a huge challenge. Her health and pain levels are unpredictable, so planning ahead is difficult. We often leave events early; we frequently cancel at the last minute. So often it’s just us, our family of three, just hanging in there, just coping.

None of this is “normal.” We know that, but for now, and possibly for a long time to come, this is our normal.

People expect illness to be finite. It should come with an end date. People should get better, especially kids. But the truth is for us, and for many families just like us, chronic illness can last for years, or even for a lifetime.

When your child is ill, you initially look to your family and friends for support – both emotionally and practically. To begin with, this was absolutely the case. Friends brought us dinners and treats for Bonnie, they were valuable sounding boards, they mopped up tears, they made coffee, they were there for us.

But after years of living like this, many of our friendships have dwindled, both for Bonnie and for us. Girls who I had imagined she would be friends with forever have simply walked away when things got tough. The mum of one emailed me to suggest her daughter needed “time out” from their friendship.

People tire of illness. They want positive news and uplifting stories, and when you have nothing positive to contribute they lose interest. But our sorrow and stress isn’t contagious.

Lorna is mum to a 14-year-old girl with cerebral palsy and chronic bowel and bladder disorders, explained to me “I think the medical bubble we live in, the challenges we see, the highs and lows, means that we live different lives to our friends. It’s very difficult to go out with friends and talk about their work problems, etc., when your head is full of worry and exhaustion. The continuous juggling of medical appointments, treatments, care and paperwork leaves only the tiniest remains of your happy, healthy, funny former self that they used to know.”

Back in the 1960’s, a family counselor called Simon Olshansky came up with the term “chronic sorrow.” His work was with parents of kids with developmental and learning problems, but these days the term is also used for parents of a child with chronic illness.

Olshansky observed that the sorrow parents experience as they observe their child missing out on milestones, the worry about their future, mixed in with their natural love and pride for their child, has a profound effect on the emotional wellbeing of parents – quite literally leaving them chronically sad, a lot of the time.

When you feel emotionally drained from caring for someone in pain, from endless nights in hospital, from talking to doctors, from battling with schools, it takes a while to notice that friendships have dwindled. We become isolated, lonely and all consumed by the negativity illness can sometimes bring. We don’t have the time or the energy to reach out to friends, but we do need them to reach out to us.

Death is terrifying and devastating, but it has rituals that can help us deal with it. We send cards, we buy flowers, we attend funerals, we know how to pay our respects. Chronic illness has no guidelines, no rulebook. It makes people uncomfortable; friends feel guilty that they and their kids are healthy and happy. They run out of words to ask how Bonnie is, or how we are coping.

Sabina, who has a child with complex health needs, told me “I see certain friends less now because they didn’t try to help, understand or be there for us, or because they were completely insensitive and brushed our issues aside as if they were nothing. That really hurt. The whole journey has made me re-evaluate life, friendships and relationships.”

But it’s not all bad. The friends who are still beside us are the very best we could hope for. Many of them have been through their own traumas, which has perhaps given them a better understanding of what we’re dealing with. Bonnie’s two best friends are, quite simply, superstars. They visit her in hospital and don’t notice the machines, drips and beeps.

I joined a closed Facebook groups for families with similar conditions, I cannot even begin to describe how much it helps to talk to people who are living through similar issues as you. These groups are extremely helpful, but it’s not the same as the support you need from your friends – the sort of friends who knew you before your child was chronically ill.

A version of this post was originally published here on The Standard Issue

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6 Things I've Learned Along the Way With Chronic Illness

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I have learned a thing or two along the way. Forgot some and learned again. Learned the hard way. But learned.

I have learned to pace myself or I will suffer the consequences of not doing so. I have also learned there are times I am willing to suffer the consequences on specific occasions if I have the recovery time. Like I went bowling with work for a charity event because it was for charity and I love bowling, but there is a mighty price to pay for bowling; I happened to have time off after to recuperate.

I have learned to stay within my limits. However, I have learned this doesn’t mean not doing things or trying new things, or testing my limits on new things. With exercising, for example, you have to find where your limit is to find your starting point — they say the “edge of the alarm” pain. That is a limit. And go from there, slowly and steadily increasing as you go along. Well, life is like that. I want to do something and it depends on my existing pain and my existing energy and now time I may have after… and therefore where that limit may be. So I give it a go and nudge it a little to see if I can in fact do that thing that day or not. I learned limits are there to remind me not to exceed them, although it happens sometimes, and they’re not so much there to limit me from living my life.

I have learned that work doesn’t define who I am and my self-worth. With chronic illness, so often we have unstable work situations and careers. It is such an unfortunate thing when we have so very much to offer. I had to learn that I am not what I do. I was on long-term leave for a couple of years and in that time my self-worth took a hit and I had to redefine myself without work. I had to understand my innate worth. We are far more than what we do for a living. So I have taken a part-time job that eases my health and maybe it will do nothing career-wise, but it is good for my well-being.

I have learned my mental and emotional well-being are just as important as my physical well-being, if not more. Chronic illness is stressful and we have to understand the impact it has on us mentally and emotionally. As well, of course, as manage the mental illness disorders we have. I have depression associated with chronic pain, which I ignored and thought I could handle on my own for many years. I spent many years battling a brain that simply didn’t want to survive. Exhausting. Addressing this directly and taking medication for it not only helped with the depression, it has affected how I cope with the pain.

I have learned self-care is one of the most important things. We need to take care of ourselves and put ourselves first once in a while. Especially on the bad days, we need to take care of ourselves. Took me a long time for this one because it seemed I should spend every extra moment being productive since it took me so much longer to get things done. I’d feel guilty if I did self-care.

And I have learned to rest when I need it and to not feel guilty about that. We need to conserve our energy and manage our fatigue… it is part of pacing. Again… that guilt thing plagued me for some time. Finally I understand it is necessary for me to take care of myself.

We learn. We adapt and we cope. It is the chronic illness lifestyle. I refer to it as a lifestyle because we live in a specific way to manage our chronic illness. A slower paced lifestyle, one where we have adapted and coped to live the best we can with the illnesses we have, with that desire for improvement of course. What I have learned is, from my experience, our perception of our illness evolves as we cope, not to mention we gain a certain level of acceptance.

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6 Things You Can Do to Improve Your Experience With EMS

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Being an EMT and ski patroller the last three years, I have seen a fair amount of illness and injury. Of those I’ve treated, some have had cancer, arthritisdiabetes, and some more unknown conditions like dysautonomia and CRPS. On top of that, I have my own set of medical conditions. That being said, I have been on both sides of the situation: a patient and a provider. I have had some really good providers and I’ve had some that were really awful.

Problems with emergency medical services (EMS)  generally arise due to a lack of understanding on the part of the medical provider, so here are six things that individuals with chronic illnesses can do to prevent such issues from occurring.

1. Be prepared with information about your condition(s). This can actually be written out in the form of pamphlets, wallet cards, and/or articles or you can verbally explain your condition to your providers. Be prepared to do this clearly and concisely. In the heat of the moment, this may be a challenge for some, so having materials prepared in advanced can be very helpful for everyone involved. You are your own best advocate!

2. Have an updated medication list compiled. Many individuals with chronic illness take medications and/or supplements. Be sure to list everything you are taking. EMTs and medics will ask for the names of all your medications. If you have a list, it makes it easier for the provider to compile the information for the trip sheet because they can just copy it off the paper. Consider keeping an electronic copy on your phone for when you are out and about. It is very prudent to put the medication list and the information of your conditions in one place, so you know where it is in the event of an emergency.

3. Consider a wearing Medic Alert bracelet. This is a really good habit to get into especially if you have conditions that could render you unable to communicate for yourself. There are many different styles and colors out there to make it your own. My alert bracelet is a sporty, silicon, blue/lime green band with a QR code that, when scanned, pulls up an electronic medical record that you can customize with as much or as little information as you want.

4. One of the most crucial thing for both patients and providers is patience and encouraging a environment to teamwork. You could be the very first patient they’ve had with your condition and they may need to take some time to work with you and learn. If you score a provider that is willing to learn, take the opportunity to educate them. Other patients with the same conditions that have them as a provider later down the road will thank you. Who knows? You may even have the same provider at a later time.

5. I always try to maintain a good attitude (even though it doesn’t always work out that way) when dealing with a medical provider during a time of crisis. Everyone with chronic illnesses (or everyone who has ever been sick for that matter), knows it is extremely challenging to be pleasant when you aren’t feeling well. EMS know that if you’re in the back of their ambulance, you are probably having an especially rotten day. You don’t have to be all “sunshine and rainbows,” but if you treat them with respect, you deserve the same in return.

6. Lastly, remember EMTs and paramedics are human. They have their bad days. They may have dealt with something unimaginable prior to come to you. We make mistakes and sometimes at the end of 24-hour shift, we’re just plain tired. Many chronically ill individuals deal with at least one provider that hasn’t helped them, accused them of faking, or was just plain nasty. It’s unfortunate, but it happens.

Prepare yourself using some of these tips and hopefully the next time you require the services of EMS, it will be a smoother process!

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7 Ways I Cope With My Loss of Identity After a Chronic Illness Diagnosis

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When I became ill in early 2015, it felt like my world was coming to an end. I had my dream job, I was volunteering and I had just finished my counseling diploma. I was looking forward to spending more time with my family and for life to become a little slower paced. I didn’t expect it to come to a screaming halt. I spent most days on the settee or on in bed — crying.

Within six months I lost my independence, my dignity and my career. I lost my whole identity as another one was forced on me. And I felt sorry for myself. I cried for the person I was and the person I wanted to be. I cried because of the person I had become. I felt sorry for myself and did so for most of 2015.

People who haven’t gone through a life-changing experience like a chronic illness sometimes can’t understand the enormous feeling of loss that you experience.  How many times have you heard phrases like “feeling sorry for yourself,” “pity party” or “pull your socks up and get on with it.”

What they don’t understand is that you’re grieving. In her book “On Death and Dying,” Dr. Elisabeth Kübler-Ross said there are five stages of grief: denial, anger, bargaining, depression and acceptance. These stages of bereavement aren’t just for those coping with or facing death. They’re also present when coping with a personal loss, divorce, loss of a job, infertilityaddiction and chronic illness.

I’ve pretty much gone through all of these stages in the last 18 months more than once and will probably go through them again (hopefully, not as intensely) because grief and grieving are not a straight line process. You don’t start at “anger” and work through to “acceptance” and then, presto, everything is fine. Life isn’t like that, and chronic illnesses don’t have a neat little timetable you can go by.

How do I cope? In part, my training as a counselor has helped. I have to be self-aware and be able to recognize and own my thoughts and feelings. It doesn’t mean I’m immune to the stages of grief; it just means I’m able to take a step back and identify them.

Here are seven ways I cope with my loss of identity:

1. I allow myself to feel the way I do.  

I have a right to feel my own feelings and express them. This can be pretty scary for yourself and those around you. You might not have realized how powerful these thoughts and emotions were or how deep they go. 

2. I have a choice.  

I bet you’re asking, “How can you have a choice when your whole identity, your ability and independence has been stripped away?” Every day I have to make choices. This morning I had to get up, get showered and get dressed or stay in bed. This might not seem like much, but these little choices have helped me feel I have some control over my life. I can choose to be happy or angry and relaxed or stressed. And I choose how I react to my thoughts, feelings and those around me. Sometimes I chose to be the angry, stressed and irrational because I needed to get it out of my system. 

3. That said, I don’t hold onto them.

I feel them, I express them and I let them go. When I have a good five minutes, I try to enjoy those pain-free, fog-free moments. I don’t want to depress myself by worrying how poorly I could get at any given moment.

4. Expect a bumpy ride.

Be kind to yourself on bad days. Celebrate the good days. Expected the unexpected. They may sound like clichés, but I think they’re right. Life is messy, and life with a chronic illness can feel even more so. We aren’t Scouts — be prepared is a pretty difficult motto to live up to when you don’t even know how you are going to be in the next five minutes let alone the next day, week, month, year. Living with unknown is hard. I found mindfulness helps. No, it doesn’t take away my pain, but it helps me be in the moment, the present and the here and now. It takes practice. It’s not easy, but then living with a chronic illness isn’t either.

5. I find comfort in the experiences of those who are like me and in learning about my condition.  

Facebook groups, bloggers, Pinterest boards and my family. These are places I feel safe enough to express myself and educate myself. Here I find understanding about the day-to-day realities of life with a chronic illness. They help me understand what’s happening to me, so I’m not in a permanent state of confusion and don’t feel alone. 

6. I got a hobby.  

At first I watched a huge amount of Netflix, but the busy person in me found it hard to do nothing all day except rest. I thought about how creative therapies are used to help people. I taught myself to loom knit, weave and crochet. I’m still trying to widen my creative horizons on days where I can’t use my hands. But my brain still works, so I have alternative methods of coping instead of lying in bed feeling useless.

7. I laugh at myself.  

I poke fun at my own condition, especially on the fibromyalgia fog days because you know I’m quite funny when my brain isn’t in gear, and I don’t want to be frustrated and angry all of the time.

All of these help me cope with my loss. They help me realize that having a chronic illness isn’t the end of my world. It’s a chance to think about who I was, who I am and who I want to be. With time I’m sure I will get to “acceptance,” and the grief I feel will fade. But until then, I’m not beating myself up about the times that I’m “feeling sorry for myself.”

Follow this journey on The Dottie Dormouse.

Lead photo source: Thinkstock Images

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When Health Issues Make You Question If You're Living Up to Your Potential

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“You’ve got so much potential.”

I remember people telling me that, and my teachers telling my parents that about me, too, when I was younger. What does that even mean?

“You can do anything you set your mind to.” That’s another one. I’m pretty sure I tried to move objects with my mind after too many episodes of “Sabrina, the Teenage Witch” but that was never successful. I’m pretty sure I’ve tried to get a better paying job and win the lottery too, but those didn’t work out either. My “potential” feels quite limited, given the health issues I’ve had. The last nine years have felt wasted in comparison to how I thought they should have been, to how my 20s should have been lived judging by the media and the lives of those around me, or peers on social media. These two phrases, rather than inspiring confidence in me, make me look back on the years and wonder where it went.

What happened to this “potential?” I feel like I haven’t gotten anywhere, done anything of importance, or become this amazing person I could or should have been. I weigh up where I am now to what society and those around me perhaps have thought I should be at this point, and I feel like I’m never enough. If I was full of “potential,” is it still there? Has it disappeared? Or am I using it and living it without realizing?

I think our choices are part effort, part chance and part circumstance. We have the potential to control our actions, our emotions and our responses to events, but even these things are partly influenced by neurological and biochemical factors. Our circumstances and choices can be restrained by invisible illness, be that mental or physical. It may have a small effect. Or it could have a huge impact, limiting your “potential” and the things you could do or would like to do.

What we do have is boundless potential when it comes to our thoughts. To define the meanings we associate with things, the value we put on our life and the things in it. We have the potential to change how we see the world and our role in it. Who we are and where our lives are at is something we need to take responsibility for and be active participants in this process. But this is our journey, influenced by our situation, our body, and our thoughts. It is no one else’s.

Rather than define this “potential” so unrealistically and having goals set for us as a result of society’s idealistic standards, why don’t we redefine it in line with our own situation, health, abilities and desires?

All of this pressure, measuring ourselves up and feeling inadequate only serves to make ourselves feel like crap. No one else, just ourselves, if we let it make us feel like this. If we value our lives more, if we become more aware of our freedom of thought and choice, we would be able to realize that we are enough. You can’t measure the length of a cucumber by shoving it on the kitchen scale. Neither can you measure or define your worth, value and success against your peers and prescribed social paradigms.

Follow this journey on Invisibly Me

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No, I Can't Just Cancel or Reschedule This Doctor Appointment

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Because of my complex medical issues, I need care beyond that of your Average Daisy or Joe. I go to my local university-affiliated center, which thankfully has offices in my city.

But sometimes, I’m too much for them. So they send me to HQ (headquarters).

And getting into HQ is quite a mission. It’s at least a 3- to 4-month wait, plus you are at the whim of those big fancy doctors at HQ and how they feel that week or if they have a class to teach or an important meeting to attend.  Of course, it’s deep in the heart of Los Angeles traffic. And they always want to offer you 8 a.m. or 3:30 p.m. appointments, which will inevitably turn into six-hour excursions depending on traffic, like any true Angelino knows.

Many think people on disability have all the free time in the world. Free time for all sorts of fun stuff. I, in fact, with all of that time, have four standing appointments every week plus whatever follow-ups and tests I have. Being on disability isn’t this glamorous life, laying on the couch with your make up done and a bag of Hot Cheetos and Netflix, waiting to go out for Happy Hour. It’s actually being at home, being sick and unable to do anything else.

We don’t choose to sit at home, waiting for those six months to pass before we see the specialist who may or may not give us an answer. A specialist who may or may not make us feel inadequate and “crazy,” like so many specialists have before. A specialist who might say, “I have no idea” and send us onto the next wait list for the next specialist.

Imagine going to work on Monday morning and telling your boss, “Hey I just don’t feel like doing the training today. I know we’ve had it planned for six months and I’m supposed to conduct the training, but I’m just not feeling it, and I got a better offer. Sound good?”

That is the equivalent of canceling an appointment at HQ.

My appointments to me are what your job is to you. My appointments are my job. I literally have no other job than going to my appointments and taking care of myself.

When you decide you want to get coffee on Thursday and that is quite possibly the only day that works for you for the next six months, I’m sorry, but HQ is calling. You can’t just willy-nilly with HQ. HQ doesn’t work like that. HQ sets the rules; we are but mere ants who follow them.

If it is an appointment I am able to reschedule and there truly is a conflict, I will. But some appointments (those pesky HQ ones) are not reschedulable. No matter how bad I’m feeling, no matter what is going on. I will move mountains to get to those appointments.

And I’m sorry, but at the same time not sorry, about coffee.

By saying I should be able to reschedule my appointment to spend time with you, you are invalidating my very real and very serious medical condition. You might have a few hours off from your kids or be between classes, but this is my illness. My very real illness that doesn’t take a break, doesn’t relent. An illness I’ve been fighting for years.

So no, I can’t reschedule.

I’ve probably been waiting for this appointment for four to six months, and then if I reschedule who knows when the next opening is. Sometimes I can, and I will. Sometimes I have to. Sometimes I physically can’t drive to my appointments, which is why I’ve developed an extensive network of “drivers” (see: family and friends).

I know when I reschedule an appointment I shouldn’t have because the person inside the person with chronic illness wanted to have some fun that day. I get the same nagging feeling I got when I ditched class as a student. It’s not a good feeling to have.

So I stopped. I stopped missing appointments because I wanted to hang out with my friends or see my partner or go get coffee. I stick to my schedule because I learned, like I said before, my appointments are like my job.

I may not be able to do a 9 to 6 Monday through Friday for 50 weeks a year like most people, but I can do an 8 a.m. on Monday in six months at HQ.

Follow this journey on Living Without Limits.

Image via Thinkstock.

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