woman sitting in chair at doctors office

I’m a talker; I believe that words are powerful. A person can be placed on the highest pedestal or reduced to nothing by just a few words.

During the course of my hardships and illnesses, I have learned that the only thing as powerful as words is silence.

Sometimes, words can’t match the healing power of silence; sometimes, words are too much, and not nearly enough.

Nine years ago, I had three miscarriages in less than a year. The first startled me, the second shook me, and the third shattered me. I felt like any minute I would drop dead from the grief. I didn’t realize the pain could possibly be worse until I learned that each precious baby had smothered in my body due to a previously undetected clotting disorder.

After each loss, there were many calls, visits and even cards. There were so many words of encouragement. I appreciate every person and every kind word, but at the time, it all seemed so empty. So often, it felt as if people were rehearsing a script that was designed to bring them comfort. I knew I was loved, but there was no magic phrase to bring my children back.

A few days after the final miscarriage (which ended my attempts to have any more children), I called my friend Steph. Steph lived nearly an hour away, and had gone through similar a year prior. The best I could do was give a brief account of the miscarriage, then I just cried. I felt so bad for completely losing it as she sat there. I ended the call, sat on my couch and sobbed. No one was home. No one could see me. I opened up the floodgates.

About an hour later, my front door opened, and there stood Steph. Quietly, she sat down next to me, wrapped her arms around me, and cried. Not a word was spoken. Nothing. We cried for my babies and her babies and all of the children that had left a hole in the heart of an excited and expectant mother. I don’t know how long we sat there; it was a long time. Finally, Steph got up and left. Not one word passed between us.

In that silence, I heard ” I understand.” “I love you.” “I hate this.” “You will be OK.”

Just over a year ago, I asked my friend Shaun to sit with me through yet another complicated, painful, horrible infusion. After five hours, the infusion was complete, and I was miserable. I was nauseated, my whole body hurt, and I was angry that at 43 years old I was damned to a life filled with these treatments. As Shaun drove me home, I began to cry. I tried to stop, but I couldn’t. Wordlessly, my friend reached over and gently took my hand in his; he didn’t let go until we reached my house. In those quiet moments, Shaun’s actions said to me “I’m here.” “I’m so sorry you have to go through this.” “It will get better.”

There were no words that could make it any better, and my friend instinctively knew that.

So often, our pain doesn’t require appeasing or distraction; it requires reverence; an almost sacred regard for our suffering.This is the exact opposite of what most of us have been told throughout or lives. I grew up hearing “Just one kind word can go a long way” and other similar beliefs. Those things are often true, but not always.

Sometimes, there are no helpful words. Sometimes, silence is all there is. And that’s OK.

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We are the warriors. The ones who pour over our medical histories the way other people pour over gossip magazines. Pointing to salacious details, judging each and every thing we see before us.

We are the warriors. Who know more about our conditions and illnesses and bodies than most doctors do. We’ve turned to medical research journals and the internet to learn as much as we can because we often have no other choice. We become experts because we have to.

We are the warriors. We may not always look sick to others, but we are. We fight each and every day against a society that often won’t label us as sick because there isn’t a visible identifier for our illnesses.

We are the warriors. We have probably had to grieve countless activities or foods or hobbies because of our struggles. We will still lose more along the way. We will have to grieve those, too.

We are the warriors. Some of us have had to give up our dream careers because they just aren’t as feasible.  Maybe we have had to change our expectations about what working with our disabilities will look like. We fight for accommodations and against workplace discrimination. Maybe we have lost the ability to work a full-time job altogether.

We are the warriors. We have lost friends or family or both because they just didn’t understand. Maybe they didn’t believe us. Maybe they didn’t want to or even try. Maybe they were mean. We had to grieve them, too.

We are the warriors. We are the ones who fight each day to accomplish the little things sometimes. Fight because sometimes sitting or tying our shoes or making the bed seem like insurmountable tasks that cause so much pain.

We are the warriors. We are called lazy or fakers or liars; sensitive or selfish or drama queens. These words hurt. Unfortunately they often become so common we become good at dealing with it. It hurts, but we learn to handle it to survive.

We are the warriors. We band together and raise one another up and support each other because we have a strong bond. A bond formed due to unfortunate shared circumstances. A bond that can form friendships and relationships in an instant. There’s no replacement for someone who “just gets it” — even if it’s hard to know because they’ve been in the same pain you’ve been in.

We are the warriors. The warriors who don’t give up. Don’t give up despite the fact that it is easier to give in, despite that not fighting for a diagnosis, or treatment, or truth is so much easier. We keep fighting. We keep advocating.

We are the warriors. We are stronger than they think. We are stronger than we think.

We are the invisible disability warriors – bold, brave, and powerful.

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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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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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