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.


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.

A Sarcoidosis Prayer


Bring safety to the vulnerable

Bring courage to the fearful

Bring strength to the weak

Bring serenity to the troubled

Bring clarity to the confused

Bring peace to the anxious 

Bring joy to the unfortunate 

Bring energy to the fatigued 

Bring comfort to the pained 

Bring education to the healers 

The Dangers Of The Outside World


Even after all these years living with chronic sarcoidosis, a disease that completely changed my life, a disease that completely changed my body…I am still sometimes astounded at what a fragile creature I have become. I am taken aback by the need to keep my world small and controlled. I take for granted the value of my daily routine and only notice how dependent I am upon it when something forces me to change it. Recent life events, nothing I need bore you with the details about, have forced me to be more active in the “outside” world than I would normally be. These events have taken me out of my daily routine. They have been stressful events and I have had to push myself physically in ways that I usually don’t and now my body feels shattered.

I will figure out how to put the pieces back together. I always do. This isn’t the first, nor will it be last time, I will feel this way. Feeling overwhelmed by pain, fevers and fatigue is a constant struggle living with chronic sarcoidosis. Outside forces have a way of inflicting themselves on me from time to time and when they do, I often find that being taken out of my very carefully crafted routine, leaves me pained and drained in ways that feel like I have become a wrung out dish rag in need of a good washing.

In recent weeks, I am reminded of the necessity of my routine and that when that routine is broken, I suffer…physically and then emotionally. There is a snowball effect to what happens to me when I leave the delicate world I have created for myself. Sometimes I feel trapped by this world but when events such these occur, I am reminded of what a gift it is to live in a world of my own making, a world that protects me and keeps me healthier than I would otherwise be. It’s a small world but it’s a precious one and I should not take it for granted because it is the only world that gives me peace.

Being reminded of how fragile I am is always a kick in the gut and, maybe that’s because the small peaceful world I have created for myself, the one that keeps me as pain free as possible and helps me manage my fatigue in a way that allows me to feel somewhat human, is well…just that…small. I hate to think that I have to live a small life and being forced out of my routine reminds me of my limits. There is no doubt that living with a chronic disease like sarcoidosis, that can be set off so easily, shrinks a person’s world. And, even though I have a wonderful small world to live in, there is grief and there is loss in having to accept the boundaries placed upon me as a result of being sick.

While I am still sometimes surprised by the ways in which sarcoidosis has changed my world, my body and my life, the reality of my life remains the same. I am physically fragile. My routine is an anchor that keeps my world both small and manageable. I need it like I need the air that I breath and I need to keep the outside forces that haunt this world at bay as much as possible. I am humbled to live in this wee little place but I need not feel insignificant because of it. It’s not my fault I have to live this way. In fact, I need to protect my safe, small, precious, world as if my life depended on it…because it does!

Hear This…



Hear me when I say that your unhappiness is not my problem. Hear me when I tell you that as hard as you try to bring me down, I won’t fall. Hear me when I say that you can scratch and claw at me all you want but, you will never hurt me. Hear this loud and clear and once and for all, I will not join your unyeilding pity party. I would rather stand on my own in the sun than be in the company of your constant misery.

Hear me when I say that my struggles with sarcoidosis are real. I wrestle with the same hardships of living with chronic illness as you do. I just refuse to wallow in it. Hear me when I tell you that my happiness isn’t about you. If you are offended by my happiness that only means you’re jealous of my serenity and that ain’t my problem. Hear me when I say that your judgement of my decision to live a joyful life despite my illness, says more about you than it does about me. Your spite makes you sicker but it doesn’t do a thing to me.

Hear me when I tell you that I’ve become immune to your constant criticism of my continued enthusiasm to live a peaceful life. If you don’t want to see what is still good in your life because you got sick, go do it somewhere else. I can’t afford to expend what precious little energy I have on your relentless negativity. Hear me when I say no one with this disease has it easy and hear me when I say that it’s not a competition.

Hear me when I say that it’s not always easy to choose happiness but it’s still a choice. Hear me when I say that there is a difference between grieving the losses of life with a chronic illness and reveling in suffering and anguish. Hear me when I say that I understand all too well the pain, both physical and emotional, that chronic disease heaps upon us because I feel it. I feel it one way or another every day. Hear me though, when I tell you that despite this pain, I make a choice every day to look beyond this darkness and seek the light.

Hear me when I say that my gratitude for my life, no matter what befalls me, is how I cope. If you want to linger in your despondency be my guest but, I will not join you there no matter how hard you pull at me. If that’s the place you feel most comfortable then by all means stay there in that place but, stop trying to take me there with you. Hear me when I say that I won’t go.