Girl in red jacket standing on the fork of two roads.

Having chronic pain or illness — or, as is often the case, both — is hard work. One reason for this is that we must constantly assess and evaluate if we’re managing our health and our relationships skillfully. This requires us to make tough choice after tough choice. Here are five of them that we continually face.

1. Do we push our body to the limit or do we always play it safe?

Sometimes, the desire to be like healthy people is so strong that we can talk ourselves into pushing our body to do what it cannot reasonably do. About two years ago, my granddaughter Camden was visiting. I was so frustrated by always feeling sick when she was here that I decided to “act healthy.” We have a park next door to our house. I took her there for over an hour, helping her with the slides, pushing her on the swings. I was in a defiant mood: “I’m tired of being sick. I’m just going to act as if I’m healthy.” What I got for my effort was a week of payback with exacerbated symptoms.

On the other hand, I find that if I always play it safe, my body gets so used to the strict regime I put it on that I lose my ability to be flexible at all. For example, if I always nap at noon sharp, then if I’m 15 minutes late one day, I feel like I’m going to collapse on the spot. So I purposefully mix up the exact time I nap so that my body doesn’t become conditioned to following a rigid schedule. That said, my ability to be flexible has its limits: I don’t have the luxury to just skip the nap.

If it’s possible for you, I recommend a middle path of gently challenging your body now and then so you don’t fall into a fixed pattern of behavior that underestimates what you might be able to do. But, as with the other tough choices, I find this constant assessing and adjusting, assessing and adjusting to be exhausting in itself, both mentally and physically.

2. Do we keep our health problems private or do we talk openly about them?

If we talk about our health problems, some friends and family members may respond judgmentally or even turn away from us. And even those who don’t turn away may change the way they relate to us. We want to be treated as whole people and as adults, but if we share our health struggles with others, we risk being treated like a shadow of our former selves.

On the other hand, if we keep quiet about our health issues, we risk leading others to misunderstand what we can and cannot do. In addition, by keeping quiet, we’re passing up the possibility of receiving much needed support — both emotional and practical.

If you’re like me, it can be exhausting, both physically and mentally, to continually assess and decide what you will and what you will not share with others about your health.

3. Do we ignore a new symptom or have it checked out by a doctor?

If we raise a new symptom, will our doctor think we’re being oversensitive or that we’ve become a hypochondriac? On the other hand, a new symptom could be the sign of something serious. I read in one of my chronic illness books about a woman who ignored a new symptom because she decided it was best to assume it was related to her chronic illness. She also said that she waited so long to see her doctor because she “didn’t want to bother him.” The new symptom turned out to be stomach cancer.

What to do when a new symptom appears necessitates making another tough choice: wait or act immediately? We have to listen carefully to our body and decide for ourselves.

4. Should we risk trying alternative and unconventional therapies?

There’s no right or wrong course of action here, but it’s a choice that, for me, has been costly, both to my pocketbook and, at times, to my health. I used to spend hours and hours, using up what little energy I had, combing the internet for cures. As I wrote about in my piece “Finding the Health Information You Need on the Internet,” anyone can create a website, set up a payment plan, and ask for your credit card number. People spend thousands of dollars on false cures. I know because I’ve done it.

On the other hand, I’ve also read about people who’ve been helped by alternative or unconventional treatments, so it may not be wise to decide to disregard them entirely. These are tough choices: what to take, what not to take, how to assess the monetary costs, what to tell our doctor about what we’re taking or not taking.

5. Should we aggressively fight to regain our health or should we accept our fate?

Constantly fighting to regain our health is also exhausting, physically and mentally. But the alternative of passively accepting that this is the way we’re going to be for the rest of our lives doesn’t feel like a wise choice either. Again, I recommend a middle path. It took me a while to realize that I could acknowledge and accept my health as it is right now, while at the same time continuing to try to regain the health I had before I got sick. These two courses of action aren’t contradictory.

It wasn’t until I began to accept — without aversion — however I happened to feel on any given day, that I was able to begin looking for ways to enjoy my life again. But an integral part of that life is keeping an eye out for new treatments. It can be a challenge to gracefully accept how I feel at the moment, while at the same time continuing to be proactive about my health… but I’m working at it.

***

It’s hard work to continually assess, evaluate, and choose a course of action while already sick or in pain. My wish for you is that you be as kind to yourself as you possibly can as you struggle with these tough choices.

This blog was originally published on Psychology Today.

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Thinkstock photo by Discha-AS

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Life has a way of throwing us curve balls when we least expect them. Chronic illness and disease is at the top of the list of many of our biggest fears. For those of us who receive the unexpected diagnosis of having a chronic illness, it can be absolutely devastating. It changes the structure of the lives we have created and affects our relationships, careers, finances, and our overall mental well-being.

Having a chronic illness can feel hopeless. There are several ways it can destroy your will to continue living life as you have known it. Not only the physical pain it creates, but the mental struggle you begin to endure when trying to face this new reality. Here are my three steps to “reclaiming” your life with chronic illness:

1. Love Yourself — Sounds so simple, right? It can be challenging to do when you have a chronic illness. It’s an important aspect of healing and if your illness does not have a cure, I think it’s the most important part of living with your disease. I recommend making positive choices to combat your illness by creating a wellness program for yourself. For example, eating healthy, drinking plenty of water, stepping out into the fresh air when you can, and thinking as many positive thoughts as you can. Create a series of affirmations to say in the mirror and use them even on your worst days. An example of one is, “I am happy, healthy, wealthy, free, and fearless.” It may not be a cure, but when you apply the step of giving yourself the love you deserve with a little self-care, it can go a long way.

2. Embrace the Experience — I believe life gives us only what it knows we can handle and you have been given this experience as part of your own personal growth. You are stronger than you may believe you are. Chronic illness is not an easy battle to face, but I think the more you fight against it, the worse it becomes. When you are in conflict with what you are experiencing, that is often when you suffer more than you have to. Challenge yourself to embrace the experience. Read books, educate yourself, find a support group, seek therapy. Make positive actions to living the best life you can.

3. Advocate for your Disease — What better way to help yourself than to help others simultaneously. By advocating you may gain a sense of purpose and make a difference. Advocacy also helps to remind you that you are not alone. There are several ways to be an advocate. If you have to stay in bed you can even advocate from the comfort of your own home. Bring awareness to your disease by utilizing technology, social media, leveraging your experience by sharing with family, friends, and your community, or even create a foundation.

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Some may look at that title and think that wanting more than what you have is a bad thing, but not me. It is the thing that keeps me going. It is the thing that has provided me with drive and determination.

It is what made me travel the world. It is what made me come back. It is why I waited to marry until I met the perfect man for me. It is how I was able to graduate, 10 years post high school, Magma Cum Laude. It is why I left one entrepreneurial dream to set out to an unknown career path, which led to my most favorite job I’ve ever held. It is why I had three amazing kids in less than four years. It is why I decided to leave my most favorite job for a life home with the kids. It’s why I wanted us to move in favor of lifestyle over corporate ladder.

It is also why I never hesitated to use supplemental oxygen. It is why I utilized numerous paths of healing, from the best modern medicine could offer to meditation and acupuncture. It is how I dragged myself to the gym when it felt like an elephant was sitting on my chest. It is how I can wipe away my tears and smile at my children. It is how I survived with a cannula, prednisone “moon face” and a humped neck and pregnant-looking belly walking slower than the slowest poke in town with a complete lack of embarrassment. It is how I asked for all the help I could get. It is why I was able to withstand three days of steroid withdrawal symptoms every week for months on end. It’s why I do not hesitate to go to the ER or call on a doctor for advice immediately. It is why, when we went to Disneyland, I ordered and utilized a scooter and registered as a disabled person. It is why I still go outside, even though I have to cover myself head-to-toe to keep out of the sun. It is why I will say yes to a social invitation and also not hesitate to cancel at the last minute of needed.

I always want more out of this life. As a close friend and confidant recently wrote, “Life is so very rich, and I find myself wanting more. More time to witness the lives of those I love, more adventures, more experiences. Always. Wanting. More” I absolutely couldn’t agree with her more and she inspired this long-overdue post. I was blessed with a pretty awesome summer filled with a Disneyland adventure, hosting my dad’s 70th birthday week at our home and various fun-filled days with the kids and evenings with my husband. It wasn’t without its struggles or its medical issues. But it was a happy summer. It was more… more than we had last year and more than I expected it could be. I don’t always have an end goal in mind, but wherever I am… I strive to go to the next level. Some days that is to get out of bed, or to take a shower, or feed my kids. Other days… it’s getting to the gym, cleaning the house, or doing a favor for someone else for a change. Sometimes it is just to hang on the the little shred of sanity I might have left in the day. But I’m always wanting… always striving for more.

Unbelievably, that wanting and subsequent striving has gotten me places that I didn’t know were even possible. I’m no longer using oxygen. I did a muscle retest and the effort I’ve put in is registering improvements. I’m going longer periods of good days. I ran… I ran without the use of oxygen and my children had a look of shock, pure joy and utter confusion and it was a glorious 30 seconds. And it doesn’t matter it was only 30 seconds… it only matters that it was more than before. Once I could barely walk across a room and now I ran. No matter what state you are in, you may not be able to be who you once were or have what you once had or do what you once were able to do… but I think you can always look at any moment and want more and do something to get more out of this life.

Follow this journey at Living and Breathing Relatively Unscathed.

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Fine.

I’m convinced there’s not another word that could be taken to mean so many different things. When I go to the doctor, that’s often all I hear. “Your labs are fine.” You’re fine. Everything’s fine.

On paper, I’m fine. My rheumatologist said he doesn’t even need to see me again for another year. Obviously to him, I’m fine. I am starting to think that maybe we accidentally stumbled upon the least of my problems (Sjogren’s syndrome) and have yet to discover the bulk of my issues. Constant stomach problems and continued weight loss, but I’m fine! No worries here.

And yet, “fine” is my favorite thing to say when people ask me how I am doing. I don’t know exactly why I do it on any particular day, but here are my theories:

1. Comparatively at the moment, I really am fine. “Fine” is such a relative term. My response may really mean: Compared to having my insides revolt against me the last three days, today I’m fine.

2. Much of the time, people don’t want to know the real answer to the “how are you?” question. When I have been honest in my response, it makes most people incredibly uncomfortable. Very few people have a clue what to say at that point, and I cannot blame them. Some feel the need to say things like, “It will all get better soon,” “The sun’ll come out tomorrow!” (I may have made that one up) or my personal pet peeve, “Well, you look good!” FYI – that last one is a terrible thing to say to a person with a chronic illness. It may not sound like it in your head, but in ours it’s as if you don’t believe we are really sick. Why the heck anyone would make up a debilitating illness is beyond me.

3. Some days, if I tell you the real answer to the question, there is a good possibility I will burst into tears, making us both incredibly uncomfortable. I am trying to appear much stronger than I am in weak moments, so bear with me!

4. I do not want to see pity in your eyes. There is a very fine line between showing understanding and pity. The few people who really listen and understand have meant more to me than they will ever know. They also don’t see me as the poor, pitiful, sick Karina. They remind me in my darkest hours, when I have trouble believing it myself, that I still have something, however small, to offer the world.

5. Sometimes I want people to believe that I am fine. I simply want to be normal again. I want to be part of the land of the living, where people go to work, attend social events and don’t spend every waking moment thinking about what’s going on in and out of their bodies. I want to have a life outside of this illness!

6. I want to believe I am fine. There’s really something credible to the theory that the status of the mind affects the status of the body. There have been numerous times that I’ve been convinced I will never get better. Of course, if I have that mindset I won’t get better! I have to believe that one day this will end, either in this life or the next, so my “I’m fine” response may mean that I’m trying to convince myself as well as you.

So, what are you supposed to do with my “I’m fine” response? That is an excellent question and sometimes I’m not even sure I know the answer. I guess I just want you to know that sometimes “I’m fine” can be taken at face value and sometimes it may say so much more. If you truly want to know the real answer, if you have some time to listen and maybe a pocketful of tissues just in case, ask again. If I trust that you really want to know, I may tell you. But don’t do this unless you really want to know. I cannot handle baring my soul to you if what I get in return is cheap, flippant responses, dismissing everything I have just said. It’s OK to not know what to say. A silent hug speaks much louder than empty words. Also realize that at the moment you ask, I really might be OK, so don’t be offended if my answer stays the same! No matter what I say, please know I love you for asking but I also may not be ready to tell you.

This post originally appeared on Beautiful Rubble.

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Friends and acquaintances often ask “How are you?” as a casual greeting — just something you say when you meet someone. And though we may automatically respond, “I’m fine!” or “Good, how are you?” sometimes we’re not being completely truthful. Especially when you live with chronic health challenges, you might not really be “doing fine” — but you may not feel comfortable discussing the health challenges you’re actually dealing with at the time.

But we want to know how you really are, and we want others to know what’s really going on with you, because you deserve credit for the challenges you live with every day. So, we asked our Mighty community with chronic illness to share what their honest answer would be if someone asked, “How are you?”

Here’s what our community told us:

1. “The honest answer is I don’t even really know. Each day is different, really each hour is different. One minute I will feel great then the next I am in so much pain I just want to lay in bed and cry. My body can be so unpredictable it’s exhausting to try and keep up. I’m also so frustrated with my body because I want to do so many things but my body is keeping me from doing so. So instead of not knowing how I’m feeling, I am basically feeling every emotion imaginable all at once. That’s how I am.”

2.It’s frustrating when people ask as most are only asking because its just a platitude, they don’t really want to know. But I will tell them, ‘It’s like wearing a lead suit, you are so exhausted you have to drag yourself around.’ Another one I have used is, ‘I am a bit like the old Holden car, the body is good but the motor is clapped out.'”

3. “I’m tired. And not the type of tired that is relieved by sleep. I mean I’m emotionally, mentally, and physically drained from living and fighting in a body that wants to destroy me. And all I ask is that you try to understand that I’m trying my best to get through this.”

4.I honestly would say ‘I’m fine’ while screaming on the inside ‘I feel exhausted and tired of being in pain.’ They are days I feel like I could crawl out of my skin.”

5.Tired, fed up, down beaten and battered. Stressed, in agony and defeated. But on the way up. I have somewhere I can call home and a fantastic man I can call my partner. I don’t have much money so that’s always hard but we’ve got each other and I am almost coping. Sometimes. Maybe tomorrow will be better or worse but we just have to keep plodding otherwise there won’t be a tomorrow to look forward to. A cuddle always makes it better.”

6. “I am surviving. I am in a body that betrays me every day. The thing is that my answer can change from moment to moment. The pain is always there. It’s just at different levels from moment to moment.”

7.I’d say that while I’m exhausted of the pain and fatigue and uncertainty, I am still grateful to those who genuinely care enough to ask me how I am and that while I feel crappy often I’m confident knowing I’m doing the best I can.”

8. “I’m tired. I’m frustrated. I’m stressed. I’m in pain. I’m cranky. I feel constantly inadequate. I feel jealous of everyone around me who are capable of doing things I use to be able to do and no longer can… And people telling me ‘we’ll get through this together,’ or ‘it will get better’ seems almost patronizing. It sounds like a greeting card… You can check out of my illnesses whenever you want. I am stuck with it forever.”

9. “Scared, exhausted, weak and frustrated but still fighting, still going strong, being optimistic and never ever giving up! Excuse my fluctuating mental state, but I’ve got this with your support.”

10. “I’m not exactly great. My body is full of pain, and I tired of pretending to be stronger than I feel. I hardly rest so besides pain exhumation has set in. But I’m alive, so I guess I’m decent.”

11. “I’m overwhelmed with simple chores. My body has aches and pains I’ve never experienced before. I’m tired even after a long nights rest. I want to go to the park, I want to be an active toddler’s mother. Some days I’m not. Some days she knows mommy doesn’t feel good, and that day I just can’t.”

12.I’m in a much better place than I was a few months ago, but that’s because of how I choose to look at my life, not because my life has become easy.”

13. “My body is in excruciating pain while I pretend to smile. I’m so tired from fighting pain and tired of battling. Then comes the no sleep on top of that. I’m tired of pretending things are good.”

14.I’m exhausted and not just physically but emotionally. I hurt every day and no, nothing makes it go away. I’m hurting emotionally too because I can’t do everything I want to do. I’m tired of hearing if you just do this you’ll feel better, I’ve tried it I’ve done it all in hopes of feeling better but it’s not that simple.

15. “Honestly, I feel awful. I’ve been in the middle of a flare up for a month and half now, and I’m just desperate to feel better! I’m trying to keep it together and seem as normal as possible, but I’m struggling.”

16. “I would thank the person for actually checking in with me to see how my day had been rather than assuming they all suck equally or that because I am pleasant therefore nothing was awful about the day. Depending on the day I would add that I am ‘in progress.’ Sometimes more. Sometimes way less. And having someone to understand that any teeny little thing that brings happiness or purpose is better when it’s shared is what would help me master the days that beat me down.”


It is no secret to those that know me that I had a major operation in April 2015. If you don’t know that I had my rectum removed and my anus sewn shut, then it’s likely that you haven’t been my friend for very long, because one thing I am not is secretive about it. It is also no secret that I have been taking very strong prescription pain medications, which I am currently trying to wean myself off of. My life is an open book. I share stories and photos regularly online about what is happening in my life on a day-to-day basis.

Except it isn’t, and I don’t.

I share what I want people to know. I post the photos that I want people to see. I tell the story that I want people to hear. I am “open” and “honest” to a degree.

About a year ago, I shared a photograph entitled “Batch cooking.” It was of an array of dishes that I had spent the day preparing for my family and a friend who had had a premature baby. There was an obscene amount of food. This photo gained likes and comments galore. It told a story of a woman who has her shit together, so much so that she can cook two weeks worth of food in one day.

That picture also tells another story. The story that I don’t tell, don’t share: the story of a woman who cooks two weeks worth of food in one day because that is possibly the one day out of the month that she will be well enough to cook. So she fills her freezer.

In the past 21 days, I have cooked from scratch five times for my partner and I. Our main evening meals have consisted of pre-cooked meals from the freezer (some batches cooked by me, others by the supermarket), takeout, sandwiches, cereal and porridge, cheese on crackers, chips, biscuits, yogurt or nothing at all.

My children have a home-cooked meal most evenings; however, they mainly consist of things that I can take from the freezer and throw into the oven: pre-cooked lasagna, sausage rolls, chicken nuggets (homemade, batch-cooked and frozen) or pasta with bacon pieces and tomato sauce, always cooked in bulk so they can have it for more than one main meal. Convenience isn’t a luxury, it’s a necessity. And I have learned how to make healthy, child-friendly convenience foods in bulk. I’ve had to.

My partner is not so fortunate or well looked after.

It also hasn’t been a secret that I have started performing again. I appeared in Jesus Christ Superstar last April, Rent in December, I wrote and performed my play, Kat’s Bag of Crap, in February and I am appearing in Bad Girls the Musical next week.

What I haven’t shared is my partner’s reluctance in my committing to all of these shows. He was worried, and continues to worry, that I have taken on too much. That I wouldn’t be/am not well enough/am not strong enough to manage the rehearsals and performances.

Of course I fought him on it. Insisted that I was fine. That I was getting better. That I could cope.

He was right to be concerned. Because I am barely strong enough and managing. I am holding on by the skin of my teeth.

Although I am making it to and through rehearsals and am enjoying myself immensely, I am also in a considerable amount of pain during and after each and every one.

The thing is, I am used to being in pain. On any given day, my pain level ranges from two out of 10 to seven out of 10. Every. Single. Day. My baseline, my normal pain level, where zero is no pain, and 10 is unbearable, take-me-to-the-hospital-now-because-I-am-about-to-die kind of pain is three out of 10. This is with two different types of kickass opiate pain relief I am constantly on. I am almost never pain free. When I hit six out of 10 I take something to help me; otherwise, I just get on with it. Pain is normal for me.

I am currently in bed, doing nothing but typing, and my pain is at a five, but I’m happy because an hour ago I was at six. So yes, I am rehearsing three times a week. Yes, I am taking part in a show. I am also taking opiate pain relief before, often during and always after each and every rehearsal and performance.

I haven’t told anybody this truth. I am petrified that I won’t be able to make it through the eight performances I have to do next week (11 if you include dress and technical rehearsals). I know that once I am on the stage, adrenaline and excitement will get me through each show, but I have to make it out of my bed, into the shower, out of the house and to the theater before the adrenaline can do its job. Today, I have struggled to get out of bed to use the bathroom.

Another non-secret is that I am looking better than I have looked in decades. My exterior is banging right now. Curves in all the right places, hair behaving, tummy decreasing. I have a waist. My levels of narcissism are rising at an alarming rate. Constant selfies flooding your timelines of me in lovely dresses, off to church. What I don’t share is that I dress up, go to church, leave church, go to my Mum’s house, change back into my pajamas and sleep on her sofa while she cooks lunch. I wake up, eat, sleep some more, drive home, give my children a light dinner, put them to bed and go back to bed myself. Every single Sunday I spend 9:00 a.m. – 12:00 p.m. looking fantastic. Three hours. That’s it.

I have had to have a nap every single day this week. How my partner puts up with me is anybody’s guess.

With all that said, I maintain that I am getting better. I am happier than I have been in years. My good days may not have increased in quantity. I may still spend a third of the year in my pajamas, unable to function due to debilitating fatigue. I’m not able to shower, dress myself, cook for my family, leave the house or lift my head from my pillow. Even though I often still have to use a commode in my bedroom to urinate because the stairs are too much for me to manage… Even though my partner has to remind me to shower and eat on the days when all I can do is sleep… Even though my bedroom is often the only room I see for days at a time…my quality of life on my good days is the highest it has been in decades.

I am no longer simply surviving, I am living. Sadly though, it hurts to live.

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