Emotional Gymnastics And Other Games We Must Play

Sometimes I wonder…”Am I just fooling myself?” I mean, I try to be a positive person despite my sarcoidosis, this chronic illness that so changed my life. I try to focus on what I have instead of what I lost. I do know how important attitude and outlook are when it comes to managing your body! The brain and the body are connected. If I ever doubted this or once didn’t give it much thought, I am wholly aware of it now. I’ve also become aware of the mental games I must play to stay ahead of a sinking, soul sucking sorrow that my body has betrayed me.

Last week, I had to go for an MRI. I’ve had them before. I knew what to expect and I’d never had a problem getting in that stupid metal tube before. This time, right after I laid down on that cold hard table and the tech put that cage around my neck…YIKES! I’ve never had a panic attack before so I wasn’t sure if this was what was happening but I could not breath, I started to sweat, I wanted to cry and run away at the same time and, I thought I might die. The tech realized quickly what was going on, took the cage off my neck, had me sit up and take deep breaths. She was very kind about it. She distracted me by asking why I was there and what was going on. During our conversation, she confessed that she too has a chronic illness. She shared some of her awful experiences with the medical community. Only someone else with a chronic illness can understand how this would put me at ease.

Something she said has stayed with me. She talked about how ever since she got sick, weird things, things she doesn’t expect or never experienced before now frighten her. She mentioned a new fear of heights. I thought about that a lot after I got comfortable enough to finally get in the tube and have my imaging done. Apparently I am now claustrophobic. Thank you sarcoidosis. Her words ring so true though, that while I know I am brave in new ways, ways other people could not be, I also now feel like a chicken much of the time, unsure and often ill at ease. It’s a feeling I have to constantly fight but has become so second nature that I don’t even know the battle is raging until, well…I have to go for an MRI! It’s a quiet state of panic until something tiggers it.

Here’s the other thing that happened during my MRI, my husband had to come in the room and hold my hand. Ugh, talk about embarrassing. Now, my husband is a wonderful man. He would never say or do anything to discourage me or further embarrass me. He came in the room, put that handsome big smile on his face that still makes my heart melt and said…”Come on, let’s do this thing.” I took a few more deep breaths, the tech said she’d keep the cage off my neck if I promised to keep still, my husband grabbed my hand and held on for dear life. I survived the MRI!

On the way home from the imaging, I found myself silently shaken and a feeling of complete inadequacy came over me. I hate how depend I feel sometimes now. I used to be so strong, could face every fear and jump into life with both feet. Not anymore. My brother once told me that he was shocked that I’m not afraid of anything. Well Bro…I am now. Some people say I’m brave because I make living in constant pain and uncertainly look easy. Sometimes I feel like a phony, like that smile I plaster on my face just thinly veils an underlying misery.

It occurs to me that the amount of emotional gymnastics that I have to play just to try to be happy, let alone have any peace, is astounding. It’s a choice to try to be happy and all the twisting and contorting I put my mind through to be grateful certainly feels like exercise. It’s hard work but it is worth it. No amount of mental gaming playing is ever going to change the fact that I hate feeling weak and dependent though. Yet, in order to shake this feeling of inadequacy, I know that I must now bend my mind around something other than my sorrow. I must push away the feeling that just because I needed my husband, I am not enough. I must focus on the fact that I have such wonderful support in my life, that he was there when I needed him and that mentally, I did overcome my new found claustrophobia. I am not deficient because I needed help. Everyone needs help sometimes. Or, maybe I am deficient but, you know what…who isn’t? However I look at it, I know that I need to accept that getting help the you need is more a sign of strength than it is of weakness.

So, “Am I fooling myself?” Maybe. Sometimes. Does this mean that I’m a phony? I don’t think so. It makes me just like anyone else who is looking for peace of mind no matter their circumstances. I don’t pretend living with sarcoidosis is easy, I never have. Learning to tumble through all the feelings that come with life with an unpredictable, possibly life limiting, illness is probably the only way for me find any happiness at all. I will allow myself those breath stopping, gut wrenching moments of reality from time to time. Life IS harder when you’re constantly sick. I will also continue to zig zag, dodge, jump and twist my way toward acceptance. I will play whatever emotional games I need to play in order to let go of hopeless fears and unproductive self loathing. I didn’t ask to be sick but, it is up to me to figure how to cope with it now! And, there’s nothing fake or phony about smiling sometimes when you’d rather cry or laughing when you’re scared. I’m not an imposter. I’m human.

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Not Normal…You Say?

Sitting in the waiting room waiting to see yet another new doctor, this time a pain management specialist, you heard me…that’s right…my sarcoidosis has led me to a freaking pain management specialist, but I digress, I’m trying to fill out the new patient forms and I don’t have even the vaguest clue how to fill out those stupid pain scale questions. You know the ones…”What’s your pain on a scale of one to ten right now”, “what’s your pain level when you wake up in the morning”, “what’s your pain level when you do this or that thing”… blah, blah, blah. I have utterly no self awareness regarding my pain. Why? BECAUSE I AM IN PAIN ALL THE TIME! It’s just become part of me, no different than a limb or a finger nail or a tuft of hair.

I let out a heavy sigh. My husband, who usually attends my medical appointments for the extra moral support, asked what was wrong. I told him that I wasn’t sure how to fill out the pain scale questions. I said and I quote…”Pain is so normal for me.” He said, in the most loving way possible, “I am sitting here right now and I am not in pain. Pain is not normal.” Not normal? Come again? What did you say? Maybe I heard that wrong!

I found it both reassuring and slightly alarming to hear that pain is not normal. I found it reassuring because it means seeing a pain management doctor is probably the right specialist at this stage of my disease process. I found it alarming because I realized at that moment, that I have been in some kind of pain so long that I don’t have a “new normal”…I have a “this isn’t normal at all” thing going on. But, I’ve been, at the very least, uncomfortable in my skin so long that for me burning sensations, sensitivity to touch and feeling like my bones are about to break are all routine. How horribly sad is that?! It’s awful. No one should have to live like this and yet…

Doctors sometimes say stupid things about sarcoidosis. At this point, I’m sure I’ve heard it all. One of the worst things I have heard doctors say is that sarcoidosis doesn’t cause pain.  Cover your ears if you don’t want to hear me cuss because, that right there is simply bullshit. When you can’t breath and you gasp for every breath, guess what? That’s painful. When, because you have sarcodiosis, you’ve also developed something called small fiber neuropathy, guess what? That’s painful. When you had to be diagnosed with sarcoidosis through an open lung biopsy and now your rib cage is caved in, as is the case for me, guess what? That’s painful. When you frequently lose your balance and fall a lot because you have sarcoidosis, guess what? That’s painful. When your sarcoidosis gives you arthritis, guess what? THAT IS PAINFUL! So, doctors who tell you sarcoidosis isn’t painful are, in a word, idiots.

Earlier this year, my right rib cage caved in. It’s concave. It’s not supposed to be concave. My entire right side is sensitive to touch, burns and my ribs often feel like they are about to break. This is most certainly not normal and it hurts. It’s exhausting to hurt all the time. My pulmonoloigst said this happened because I lost weight and blew me off. My primary doctor sent me for a bunch of tests because he was sure it was my gall bladder. How your gall bladder makes your rib cage cave in is beyond me but, there you have it…typical. Doctors blow you off or take you down a rabbit hole you know darn well you don’t belong in. I even tried to check in with the surgeon who did my open lung biopsy because that’s the area where it hurts the most so that made the most sense to me…He refused to see me.

As is so often the case with sarcoidosis, because I am sure this rib issue is somehow related to my sarcoidosis, I took to the internet to diagnose myself and, I spoke with other sarcoidosis patients. We learn more from each other than we do from most of our medical professionals. I’ve also gotten good enough with internet self diagnosis, that I don’t waste time on sites that aren’t reputable or have valuable information and, I don’t get freaked out by everything I read. I’ve probably read more research papers about sarcoidosis than most MDs. Sure enough, I found a diagnosis that fits and sure enough it is related to my sarcoidosis. I have intercostal neuralgia. I’m sure of it and it is related to my sarcoidosis because it is a complication from my open lung biopsy to diagnose my sarcoidosis. I took this diagnosis to my primary care doctor and he thought it could be that but then sent me to a surgeon to see about having my gall bladder out…there I was stuck in that stupid rabbit hole.

Fortunately for me, and maybe because I was due for a small miracle, this surgeon didn’t think my gall bladder was the problem and, after listening to everything I had to say AND doing a thorough exam of my rib cage, she sent me to a pain management doctor. She truly believes I am right about my diagnosis of intercostal neuralgia. Hala-freaking-lua! So, there I was in the waiting room waiting to see my new pain management doctor for the first time, gut punched with the reality that pain is NOT NORMAL. I know…I’m shouting a lot…sorry…I’m just a little worked up. I’m due to have an MRI of my thoracic area this week and I will meet again with the pain doctor after that to discuss next steps in addressing what’s causing my pain but even he agreed that it’s likely intercostal neuralgia. BINGO!

Sometimes it really helps me to ask my husband what’s normal and what’s not. It’s so easy to settle into my pain, to accept it as just another part of me, to not realize that I should and I deserve to seek comfort. I suspect pain will always be part of my life but doing all that I can to try to minimize it needs to be just as big a part of my life. I do not have to, nor should I accept a “this isn’t normal at all” kind of life. It’s a constant battle when you live with chronic illness. You battle the medical community to be heard, you battle constant fatigue, you battle your own emotions and you battle that sneaking feeling that “not normal at all” IS normal. I’m here to tell you that it’s not and while I don’t know how successful seeing a pain management doctor will be, I know one thing is for sure…I will keep seeking to find a better definition for normal for myself.

Self Advocacy

 

What does it mean to be an advocate? An advocate is a voice. An advocate speaks publicly and on behalf of a particular cause. An advocate takes a position and passionately supports it. An advocate is a crusader, a fighter and a reformer. An advocate is a communicator for those who cannot speak for themselves. An advocate is a champion, a campaigner and an exponent. An advocate is protagonist, of sorts. An advocate acts out of a strong desire to promote truth, to share knowledge and, bring understanding to a cloudy and confused subject. An advocate is motivated by the need to shed light on ignorance’s darkness.

When you live inside a body that is possessed by the evils of chronic disease, a disease like sarcoidosis or, any other chronic, unpredictable and often completely misunderstood condition, you need advocates. You need champions in your life when you feel too physically drained and emotionally spent to speak for yourself. You need crusaders, fighters and lobbyists. Unfortunately, sometimes they just aren’t there. They aren’t there when you have a confusing, hidden, and often completely confounding disease like sarcoidosis. You don’t look sick so…you’re faking it. Your friends and family grow weary of your constant body numbing fatigue, shortness of breath, low grade fevers and endless body aches. They swiftly move on with life while you lag behind, desperate but, unable to keep up. They become so involved in their own lives, they rarely look back to see if you are even still there. It’s not that they don’t care. It’s just that your disease is inconvenient, your pace is not conducive to modern life!

Advocates aren’t there because they don’t understand your disease. They do a quick google search, read a few paragraphs of misinformation, because that is generally what is out there when you have a rare disease, and they don’t understand what the big deal is. Again, while well intentioned, these non-advocates, often your closest friends and family, just cannot be bothered to expend their valuable time on your seemingly endless number of needs. You’re sick. They aren’t. They just don’t understand that while physically you’ve changed, you are still you and that your needs are not needless. You have the same needs as anyone else. You have the need to be heard, to be accepted, to still be valued.

Rare disease is frustrating to live with because it shapes your quality of life. When you live with a rare and capricious disease, you find yourself constantly on guard. You actually look pretty good and this is misleading, as if that is your fault too. Doctors don’t often have a full understanding, if any at all, of your disease. They so infrequently deal with it that their insecurity regarding their lack of knowledge often comes off as arrogance. They become defensive and stop listening. They treat you as if your symptoms are all in your head. They aren’t. Diseases like sarcoidosis are not easy to diagnose, they are not well researched and, there is little funding to find a cause or a cure. Nothing about living with a disease like sarcoidosis or, any other rare condition, is easy. It’s a life changing, life defining experience that you did not ask for or expect would happen to you. Chronic illness is someone else’s problem.

So, you can’t count on advocates. You’re lucky if you have even one in your life but, even they have their limits. This is not their fault. They simply don’t know what they can’t know. You’re lucky if you have someone who sees what has happened to you, to your body, your mind and your life’s path and, while not fully understanding it, still walks beside you. But, because even they cannot grasp what life is like inside a broken body, there are still times you are fully on your own. Accepting this often all too solitary path, is something anyone living with a chronic, life altering, health issue must do in order to survive. Let’s face it, even when loved ones stick with you, chronic illness is lonely. It is incredibly lonely. Aloneness is your new normal. A part of you is now forever apart from the healthy and the well. The healthy and well do not make as much room for you in their lives. It’s too messy, too scary, too awkward, too bothersome. They feel like you should make more effort. They genuinely don’t understand that you are doing the very best that you can. The brutal truth is, it’s annoying to be around sick people and those who are chronically unwell are a drain.

Living now, in a new state of separation, you must learn to communicate for yourself, to find your own words, to speak up for yourself even if, and maybe especially when, it feels like no one else is listening. Since we all need advocates in life and you now know, that even if you’re lucky to have one or two, they have their limits, you must become your own self promoter. You must be well versed, highly educated and sincerely motivated to care for yourself enough to become your own spokesperson. Self advocacy is the key to living a successful life with a rare chronic health condition. You cannot afford to try to please other people by constantly trying to accommodate them out of a misplaced feeling of guilt that you are sick and somehow let them down. You didn’t. You can’t help what has happened to you. Your needs are still important.

Self advocacy is not easy in the beginning. There is something uncomfortable about being your own champion. It feels egotistical. It’s not. It’s self care. Having an in-depth understanding of the disease you are fighting, educating the ignorant, even doctors, is vital to feeling validated. Taking the time to share your needs, even if they are inopportune to others and, doing so without guilt is a skill that takes practice. You have to make yourself your own priority when you have a chronic health condition. You cannot expect others to put your needs first. You have already been, even if unintentionally, left behind. You have no reason to feel shame or guilt or discomfort for finding your own voice. No one else is going to do it for you. Be proud of yourself for learning to become your own best cheerleader because your life’s happiness depends on it.

Good Grief

I’ve had cause to do a lot of grieving in my life. Some people feel sorry for me because of it. They like to pity me and tell me how sad they are for all the loss I have been through. This used to annoy me but now, now I realize that their pity says more about them than it does about me. In every life there is loss and in every life there is grief. No one is immune to it, even those who do not recognize it in their own lives. Unrecognized grief, stifles personal growth. I know because I’ve been there too. I’ve pushed it away and I’ve tried to ignore it, hoping against useless hope, that it would just go away. It doesn’t. When grief and loss are not acknowledged, when their value and meaning are not examined, respected and felt, grief numbs the heart, cracks the soul and erodes the foundation of who we are supposed to be. Life becomes impossible to live fully because it is dulled by our detachment and our unexplained apathy.

Grief always hurts but grief does me in when I don’t walk with it, when I do not welcome it as part of love and part of life. Loss is as much a part of living as the air I breath. I have learned that without grief, I cannot love, not truly and deeply and with passion. I have learned that without grief, I cannot better understand life’s regrets. Real grief, honest grief, gives me the chance to change, to grow and to move forward in my own life with a deeper appreciation for how the past shaped me and how the future can change me. I may never get back what I lose in grief but, if I don’t grieve, I don’t make room for anything new. Without grief I am stuck in misery and misery does not really love company. Misery is…miserable.

Grieving well is a skill. It does not come naturally. Good grief requires truth. It requires exacting honesty and this, I have learned, is not only painful, but necessary. In the end, grieving well, perfecting this skill, is freeing. But, it is not easy. I hate that life has forced me to grieve so often but, learning to grieve has made me and, continues to make me, a stronger, more empathetic and open person. Good grief, grief that is real and felt below the surface of my skin, right down through the tips of my toes, is complicated. It doesn’t happen once and then it’s over. It is a process of layered emotion and each new loss triggers memories, thoughts and feelings about previous losses, sometimes setting off a chain reaction. This, I have learned, is all a very normal part of honest grieving, of good grief.

Living with a chronic illness like sarcoidosis and now, my newest diagnosis of intercostal neuralgia, a byproduct of my sarcoidosis, is hard. Life is so much harder than it used to be. I can’t do what I used to do with ease anymore because my physical body betrays me. I am short of breath. I have stabbing pains in my ribs. I easily lose my train of thought. I often lose my balance. I’m not tired but I am physically exhausted in a way sleep does not help. I am doped up on medication. Recently, I am having trouble keeping weight on. I don’t tell you all of this so you’ll feel sorry me. Please don’t. I tell you all of this to share that part of my life’s grief is caused by serious life altering chronic illness. I am not the same person I used to be. My husband notices it. He tries not to look at me with pity but once and awhile there it is, in his eyes. I hate that. As much as I know he loves me, my disease has changed our relationship. It has changed everything.

I’ve had to say goodbye to who I used to be. I’ve had to bury her. I’ve had to let go of certain hopes and dreams for my life. So, I grieve. I have no choice. If I don’t participate in honest grief about this turn in my life, I cannot accept it and if I don’t accept it, I cannot build a new life. If I don’t grieve having become chronically unwell, I will be angry and I will stay stuck in anger or depression. Neither of which seem remotely appealing to me. So, I grieve but, it’s a good grief. It’s an honest grief. It’s grief with full and raw awareness of what is no more. It stings like a thousand bee stings. It crushes me like an avalanche of falling rocks. The weight of it is sometimes unbearable.

Yet, it’s not. It’s not unbearable because, I am still here. I am carving out a new life. Little by little, day by painstaking day, I am learning to redefine my life and as I do, I am finding hope and gratitude in unforeseen places. I recently took up nature photography. The photo above is one of mine. I hope you like it but more importantly, I like it. I love being out in nature and being blessed that it shows me things other people don’t get a chance to see. My photography gives me the opportunity to deliver nature to those who don’t have time in their busy lives, to see what I see. This is an unexpected blessing. This is a new gift that I get to share. It’s one small example of proof that as I grieve, life is renewing itself for me.

So, while grief is a difficult, complicated, sometimes ugly and very inconvenient part of life, good grief has its rewards. Good grief restores us, allows us to evolve. Good grief, while gut wrenching in the mist of it, releases us from darkness and is the very thing that will bring us back into the light.

I Never Throw The First Punch

Once a upon a time in junior high school, I was walking down the hall, minding my own business, on my way to my shiny yellow locker when suddenly three girls were in front of me. They blocked my passage. One of them said, “You’re new here and we don’t like you.” My heart started pounding so loud, I thought the gathering crowd could hear it. My throat got a raspy kind of dry and my lips curled from a desperate thirst. My palms were clammy. I said, “I’m sorry to hear that. Could you excuse me though, I’m just trying to get to my locker.” The girls stepped forward further crowding my personal space and refused to let me pass. Soon, I was cornered and felt very much like a trapped animal, backed up against that bright yellow locker I so longed just to get open, get my books and get on to my next class. I could feel my cheeks redden and sweat began to drip, drip, drip down my back. The throng around us grew and everyone just watched as these girls menaced me. They were bullies. They were testing me to see if they could control me. I felt confused and unfairly picked on. I didn’t know these girls. It was my third day of school in a new district. I didn’t really know anyone yet.

Things went from bad to worse as they continued to call me names, standing at an uncomfortably close distance. I could smell their sour breath as they railed at me. I remained quiet. I looked down. I tried not to engage. I just wanted to get out of there and I wasn’t sure how I could manage it. They had me against the wall and I could feel the cold steal of that yellow locker on my back. I didn’t care so much that other people were watching, except that it would have been nice if just one of them stepped in to help but no one did. I hadn’t thought much about how the crowd would respond to the way I reacted to these girls. I only wanted the harassment to stop and I just wanted to be safe. I bit my lip so that I would not start crying. I’m not really a crier but the stress of this most unwarranted attack was starting to get the better of me. I could feel myself shrinking. I hated that feeling more than I hated these girls who were publicly humiliating me.

I wondered how things could get worse or even how I would get myself out of this situation. I didn’t have to wait long. One of the girls spit at my feet and another one slapped me hard across the face with an open fist. I really didn’t see it coming and it stung as sharply as a bee sting and I’m allergic to bees. For just a split second, everything froze. Then, and I had to have this part retold to me by the myriad of observers because I could not remember it, I apparently dropped my books and started throwing punches. I only have a very vague memory of a lot of noise. Shouting mostly, I think it must have been the crowd.

Later in the principal’s office, I was informed that girl who hit me, her nose was broken. I was heartsick. I didn’t think I was a fighter. I’m not a fighter. My knuckles were raw and my head ached from getting my hair pulled…other than that, not a scratch on me. The principle asked me several questions about what had happened and I told him what I remembered, that I’d been unexpectedly cornered and then assailed. He handed down his punishment. Detention for a week for me and suspension for the girl who started the fight. She and her “mean girl” friends, apparently had a history of starting fights. I was not singled out for any other reason than being new to the school. The principle said he didn’t want to give me detention but he had to. I understood and took my punishment without complaint.

When I got home that night, my mother was beyond furious with me. My step father was proud. He asked me how many times I punched the other girl. I told him that I had no idea. He insisted that I give him a number. I told him five or six. He gave me six dollars….a dollar for every punch. I should have told him fifty! He told me if I had started the fight, then I would have been in trouble but he was proud of me for defending myself and told me, in time my mother would be too. I’m not sure she ever was and I was grounded for a month.

I often think about this story and others like it in my life. Just yesterday I was walking my dog. She was doing what dogs do on walks…sniffing and peeing on things. We were at the yard of a well known grumpy old man in our neighborhood. We were down by the curb, in the street, exactly where you’d expect someone to be who is walking their dog. She stopped to sniff a bush when the grumpy old man came out of his house yelling, “Get that filthy animal off my lawn.” I was shocked but, given this man’s reputation, not surprised. I said, ” Sorry…She’s just sniffing a bush. We’ll be on our way.” He said, “What are you stupid or something? I told you to get that beast the #@%#  off my lawn.” Before I even realized it, I said “Calm down and don’t be such an #$%@&*$#.”  The man was stunned. I don’t think he is used to anyone talking back to him, let alone a woman. I do live in the “Deep South” and this man is not only a grump, he is also a typical Southern “good ‘ld boy”, used to women being seen but not heard. He didn’t say another word and my dog and I went off to finish our walk.

That’s how I am though, I guess. I won’t start the fight but apparently if you come at me, I will finish it and I will give it my best shot to win. I’m a peaceful person until I am provoked but apparently, I am not a pacifist. Sometimes, I wish I could respond differently to mean people. My husband often turns the other check. He will smile and wave at people who are unnecessarily rude. He would have smiled at that grumpy old man and probably just waved at him had he been there. I’ve observed him enough to see that this is equally disarming as surprising a bully by fighting back. Sometimes, I wish I was more like that but I’m not. I never throw the first punch but it’s in my nature to defend myself…vigorously.

As I think about this quality as it relates to having chronic sarcoidosis, maybe it’s not a bad thing. Sarcoidosis invaded my life, much like those mean girls, out of the blue and for no good reason. It cornered me and it scared me, just like they did. It cusses at me, just like that grumpy old man. Sarcoidosis wants me to be miserable, just like bullies do. If I am miserable then the disease has the upper hand. I become weakened in misery. If I am miserable, I give my sarcoidosis ammunition to beat me. Sarcoidosis is a menace of a disease. It’s wildly unpredictable. You don’t know what is going to happen next when you’re in the throes of it. Sarcoidosis punched me first, but as I look at how I have responded since my diagnosis, I have been fighting back and I am giving it everything I’ve got. I might not win this war but I intend to put up a hell of a fight!

I never gave much thought to what I would do if I ever got sick, really sick. I’m not sure anyone does until it actually happens to them. I’ve learned that my fight instinct kicked in. Even though this instinct has not always served me well, has sometimes gotten me detention or disrupted my serenity on a walk with my dog, I now see this instinct in a whole new light. I am actually grateful for it because it is saving my life or at least prolonging it.

Five Things…

Five things I wish I could go back and tell myself when I was newly diagnosed with sarcoidosis:

1. Nothing is ever going to be “normal” again. You will lose your career and this will be devastating for awhile. Your life is going to change in ways you never imagined and this will be sad and scary. You will grieve. It will also be exciting and challenging and rewarding because you will learn that you never give up. You will figure out how to make the best of it. You will learn to develop your artistic side. You will write a blog, learn to draw and paint. Nature photography will become a newly found passion and you will be good at it. Despite this disease, life is still a worthwhile experience and, in some ways, it becomes more rewarding now because you are sick. You will learn to cherish what matters most and let go of what doesn’t. You will learn to live with dignity despite the fact that this disease continues to attack your physical wellbeing.
2. Learn all that you can about sarcoidosis and do not be afraid to know more than your doctors because you will know more than most of them. Question them if they say something that doesn’t make sense to you. Be a strong advocate for yourself. You deserve good care and the only way to get it is to be an informed patient. Take an active role in your healthcare and look at your relationship with your doctors as a partnership instead of a doctor/patient relationship. Make informed decisions about your treatment and include those closest to you in those decisions.
3. Finding an inner strength will be the key, not only to surviving life with sarcoidosis, it will be how you learn to thrive. It is in you. Strength is found in many forms. It is a positive attitude. It is being okay with being afraid while still doing what must be done. It can be found in tears. You will need to dig deeper inside your soul than you ever have before and with brutal honesty, you will need to accept that you are changed both physically and mentally. This is how you are going to move on with your life. It will be a process that is painful but rewarding. You will come to know yourself profoundly better than you did before you got sick and you will learn to trust yourself completely. This trust will help you improve your relationships with others. It will also help you let go of those who refuse to acknowledge your journey.
4. Take exceptionally good care of yourself physically and emotionally because doing this is better for you than any prescribed treatment. No one else is going to put your needs first. You have to learn to do this for yourself and you have learn that you are worth it. Learn to set boundaries about where to put your energy and do not feel the least bit guilty about it. Eat a healthy diet, get enough sleep, reduce stress and get regular exercise. Don’t make excuses not to because, in the long run, it will these things that keep you as healthy as you can be. Practice the art of daily gratitude because you will come to understand your own attitude plays a major role in the quality of your life. Life in a body ravaged by sarcoidosis is not easy but you will find peace and you will be happy again.
5. Life with a chronic health issue like sarcoidosis is a marathon. It is important to pace yourself. You won’t have the energy you used to have. Your mind won’t work the way it used to and no matter how well you take care of yourself, you will be physically weaker than you think you should be. You will be in some level of pain constantly. You will need to learn to prioritize your responsibilities, your relationships and your time because your energy will be limited and your pain unpredictable. Sleep doesn’t fix your fatigue and it will be necessary to say “no” to some activities. You will feel guilty but you shouldn’t. You will be alone more and you will have to learn to appreciate the company you keep with yourself. Every day will be different so when you have a bad day, know that the next will likely be better. When you have a good day…rejoice! You are not going to get better. Sarcoidosis has changed your reality forever. It’s up to you to figure out how to make the most of this new strange world and you will. You will learn and grow in ways that are profoundly important to living a truly good life.

A Touchy Subject…

I’m going to put a new twist on a touchy subject for those of us who have sarcoidosis and other invisible illnesses because, over the years that I have now had sarcoidosis, it’s something I have come to see very differently since I was first diagnosed.

One of the things I often hear people with sarcoidosis say, is how much they hate it when people tell them how good they look. I get it. I used to hate it too. It can feel like our experience, like the veiled war our body is waging against us, is being discounted. We already experience enough ignorance from the medical community we are forced to deal with, that any additional belittling of what we go through, simply feels like a deeper injustice. Depending on the tone, sometimes when people tell us that we don’t look sick, there is a hint of judgement and we are made to feel like liars. We are NOT liars!

All of that being said, I have come to view this comment and ones like it in a new light now that I’ve had this disease for quite some time. I have learned to not only accept the confusion “the well” feel toward me, I have come to better understand the part I play in that confusion. I really don’t look sick. I don’t look sick, in part, because I choose not to look sick. I work hard at it too. I take care of myself…physically and emotionally. Doing this means that I am not going to “look” however it is a sick person is supposed to “look”. In the face of unyielding physical discomfort from a disease that robs me of air and leaves me feeling like a wrung out dish rag, it really would be easier to let myself “look” sick, to not make the effort to get up and get dressed. I can’t deny that there are days when my bed does call my name and the thought of staying un-showered and in my PJs all day is tempting. Part of surviving this disease, at least for me, is to resist that call as much as I can!

I regularly exercise too. I appear to be in good shape and, I am in good shape for someone with this disease! I get dressed in clean and stylish clothes almost every day even though I sometimes have nowhere in particular to go. I wear make up. I get my hair done. I smile a lot and I try to find some joy in every day, despite how much physical pain I might be in. I don’t spend a lot of time talking about my symptoms. I try not to dwell on how badly I ache. I quietly live with my sarcoidosis because it is simply part of me now. I don’t try to hide my disease on purpose…exactly. I want to look good for myself. I want to live my life as normally as I can, despite whatever this disease is doing to my insides. Part of doing that is looking as good as I can. It’s what I would do sick or not. It’s about self respect for me, about still trying to like myself even though sarcoidosis tries to trick me into thinking I am worthless.

So, when I am putting all this effort into looking like what others would call “normal”, how can I actually be mad at them when that’s what they see? I can’t. It’s also a waste of energy. I find being frustrated by the understandable ignorance of those who have not suffered with the troubles, pains and fears of living with in invisible illness, is a useless endeavor. Now when someone tells me that I don’t look sick, I take it as a complement. It means the effort I am putting into trying to live normally might actually be working! I thank them and I mean it. But, I also take it as an opportunity to educate. I politely explain that looks can be deceiving. I find that when I do this, without anger or bitterness, people are interested and because they are interested, I leave them educated instead of annoyed with me for getting defensive and, maybe…just maybe…they will think twice before judging someone’s insides based on what they see on the outside.

I like that I get told that I don’t look sick. I like that I am able to carve out some normalcy in my life. This is just one way that I do that. In full disclosure and in all honestly, I must admit that before I was diagnosed with sarcoidosis and, before my insides decided to take a stab at me, I too had no idea what those with invisible illness go through. I was ignorant and I no doubt, said things, without intending to cause harm, that probably did hurt people engaged this very private struggle. So, before I get angry with people who tell me that I don’t look sick, it has helped me to remember my own ignorance and the innocence in it. I meant no harm…I just didn’t know any better. It also helps me be honest about the fact that I play a role in the confusion others might feel about my being sick. I really don’t look the part because I don’t want to look the part. I don’t want to be sick…so…I’m glad I don’t look on the outside, the way I feel on the inside. How ugly I would be! For me, this is one small battle I feel I’ve won! For me, being told that I don’t look sick is now cause for celebration instead of anger.