Unsolicited Advice

I’d like to take a moment to give some much needed advice to the family and friends of someone with a chronic health issue. I know, it’s rude to give advice that hasn’t been asked for but, it seems appropriate to give regardless, as I am one of those people who lives with a chronic illness so the advice I am about to give is, well, accurate!

Please, whatever you do, don’t talk down to us. Those of us with chronic illness aren’t to be pitied. We aren’t less than you. We just happen to have a health challenge you don’t have. Lucky you! A common mistake that “well” people make, perhaps without even realizing it, is that the tone of their voice changes when they speak to us. Poor put upon us! Don’t do this. I beg you. We are no more put upon than anyone else. It’s just that our challenges revolve around health. Everyone faces some challenges in life!

Whatever you do, don’t use our disease as an excuse for your behavior. This is a big one! Please pay attention to this one! You don’t get to decide when we are “too taxed” for company or conversation. If you don’t want to continue a conversation or come for a visit that’s fine. End conversations with us as you would with anyone else. Don’t blame the need to get going on our disease. You wouldn’t do this for another “well” person. We know what we can tolerate and what we can’t tolerate and, we know how to let you know. When you blame our disease for your desire to be elsewhere it hurts us. We know all conversation has a natural beginning and end. We aren’t stupid, we are sick. When you say you have to go so that we don’t “overdo it”, you are making a judgement about us that you actually have no right to make. Your intention might be pure but, all we hear is “I don’t want to talk to a sick person anymore” or “how can I get out of feeling uncomfortable around this person.”

While many of us try very hard not to allow our illness to define us, unfortunately, it does define our boundaries. It does define what we can and cannot handle and as “sick” people these boundaries have shifted. We are in pain. We are weaker. We fatigue easily. These things limit us but, they also change constantly in the extent to which they limit us. Like everyone else, we have good days and bad, ours just revolve around our health. Only we know from day to day what these limits will mean and sometimes they are unpredictable, even to us.

When you ask us how we are and we say that we feel “good”, please do not assume this means we are healed. It’s called chronic disease for a reason. When we say we feel “good”, it means one of two things: We are having a good day or, we are lying. We do sometimes just say that we feel okay because it is easier to fake it for ourselves and for you. We know how boring it can be to blather on about illness. It bores us, too. So, if you ask us how we feel, it’s not a passing question like, “How ya doing?” If you ask us how we feel, only ask if you really want to talk about it. Otherwise you could get an answer that might confuse you or an answer you really weren’t looking to get.

Do not treat us like we are breakable. Do not look at us with sad eyes. Remember, that while our bodies might be altered from disease, our brains still work. We can feel your discomfort about our disease and we notice what your eyes tell us. Our disease is our problem, not yours. You can have feelings about our illness because you love and care about us, you can be concerned for us but, we would rather you talk to us about these feelings and concerns than treat us with kid gloves and not say anything at all.

When we are unable to do something or cannot accept an invitation, especially if it involves extensive travel, don’t feel rejected by us and don’t fall into the trap of believing that we are using our disease as an excuse to stay away. It’s true that our resources for daily living are limited. It’s also true that it can be very hard for us to figure out a proper balance for how best to use these resources. We do not want to disappoint you or make you feel rejected. Our worlds are smaller now.  Sometimes we will put what little resources we have into making our own smaller worlds better for us before we will make bolder attempts to push those resources and do things we know will be harder on us. Reality dictates that we make tough calls about the need to say “no.” We understand that you might perceive these decisions as selfish. They aren’t. They are about self preservation and, you can’t fault anyone for taking steps to protect themselves, can you?

Don’t throw empty gestures at us to make yourself feel better. If you offer help, please be prepared to provide it. We are not good at asking for or receiving help. We may be sick but we still have pride. We still want to be as independent as possible. So, if your intentions are not legit, don’t bother to verbalize them. We often feel we are a big enough burden as it is, that if help is offered but not given, it feels incredibly demoralizing to us.

So there you have it, advice you didn’t ask for but, advice none the less, I hope helps you better understand your family and friends who live with chronic illness. Advice I hope you can appreciate and put into practice for improved relationships with those of us who are altered by the fog, pain and uncertainly of incurable disease.

Like The Tortoise

 

When someone asks me “how do you do it?” or if they say that they “admire” how I cope living with a chronic disease like sarcoidosis that robs my lungs of life giving air, that makes my bones ache and crack, that clouds up my brain and makes me forget words, that turns my skin weird purple colors, that gives me fevers when I least except them and makes my body shake with a chill, that fatigues me to the point of feeling like I am tied to cement blocks while trying to run through mud, I don’t know how to respond.

How do I do it? I just do. Like the rest of us facing life’s challenges, I just get up every day and plow ahead. I try not to think too much about what obstacles sarcoidosis will put in my path because it’s unpredictable and I may have a particular challenge one day and not the next. I have learned to live each day just as that…one day with no expectation of the next. I’ve learned to become more flexible. I rest when I need to and I push when I can. Although, admittedly, I am a terrible rester. I hate it but, sometimes my body gives me absolutely no other choice. I tend to do most of my resting in private when my husband is at work and no one sees it. I also tend to push myself harder when he or others are around knowing that I can rest later. I want to be my best self around my family and friends whenever I can be. Sometimes, I overdo it and I’m left entirely and completely drained for days. That’s life with this stupid disease.

Life is not perfect for anyone, with disease or without it. I try to keep this in perspective. I remember my pre-sick life. I was a workaholic. I was stressed and distracted all the time and I put everyone’s needs before my own. I lacked balance and while I had focus, I look back now and realize that focus was sometimes placed on the wrong things. Maybe this is just what I tell myself now that sarcoidosis took away my career but still, I have a kind of peace now, despite the hardships of my body and my brain. I don’t chase things anymore or what I chase now is different. I guess what I don’t do now is strive, although I’m not sure that’s true either. I strive for my best health now. I guess I still have a singular focus in a way and that’s to stay alive. Having sarcoidosis has made me acutely aware that we all have an expiration date. I don’t want to waste what precious little time I do have, however long that will be, distracted from actually living a good life!

Learning that you’re going to live the rest of your life with a chronic, unpredictable, poorly understood, often mispronounced disease, means one thing. You better wake up. At least, that’s what it means to me. Sure, when I was newly diagnosed, I was too overwhelmed to heed this understanding. In the beginning, I was on a massive learning curve, both about my disease and how the medical community works when you are the patient. I worked in the medical community but, it’s a totally different feeling being a patient! Now that I am fully immersed in life with my sarcoidosis, I know that my focus has to be on self care. It’s not selfish. It’s survival. I’ve realized too that when I focus on taking care of myself first and foremost, I am actually better able to be present and available to those I love and care about.

Today my life revolves around diet, exercise, good sleep, less stress and cultivating a positive outlook. Today, the pace of my life has utterly changed. I’m sluggish. I trudge. It’s taken some getting used to for sure and, it makes me think of the fable about the tortoise and the hare. Remember that the hare made of fun of the tortoise, asking him if he ever gets anywhere. The tortoise challenges the hare to a race and the hare laughs believing he’s got it all locked up. He runs ahead of the tortoise and takes a nap. Eventually the tortoise catches up to where the hare is fast asleep, passes him and wins the race. That’s me. I’m slow but I keep moving. Some might say my life is boring and predictable, even a little lonely but, I am still full of surprises just like the tortoise. Living with sarcoidosis has forced me to become smarter, more efficient and better able to size up how to get through any given challenge.

I’m much less sure of myself now that my body and brain don’t cooperate. I used to hate this. I don’t anymore. Now, I realize that I am humbled and, in this new state of precariousness, arrogance is a waste of energy. I think I once mistook arrogance for confidence, just like the hare! While I am less sure of myself because of my body’s failings and, this is sometimes gut wrenchingly painful for me on an emotional level, I know that I have two choices, to give up or keep bumping along. So, when people say that they don’t know how I do it, living with sarcoidosis, I’m like the tortoise now. This is okay with me though. It has changed my perspective. My slower pace affords me an opportunity to savor the smaller more meaningful joys of day to day life, like snuggles with my dog, or having the time to actually watch the sun rise or that feeling of shear joy the moment when I hear the garage door open and I know my husband is home from work. I really I am no different from anyone else. Everyone has at least one cross to bear, mine just happens to be sarcoidosis. So from now on when someone asks me “how do you do it?”, living with a nasty unyielding health condition like sarcoidosis, I will simply say, “I’m like the tortoise. I am slow but I am steady at my own pace…under estimate me at your own peril.”

‘HEAL’…My Own Experience

I recently watched the Netflix movie ‘HEAL.’ It’s a film about the power of the mind over the body and how changing our thoughts about our own bodies and our health has a significant impact on our health. It also examines the need to make positive, sustained and healthy lifestyle changes like reducing stress, eating a healthy diet and staying positive in the face of a health crisis. Watching this movie was timely for me as I am also getting physical therapy right now for a long term chronic pain issue with my rib cage, an issue that no doctor could explain. During a recent therapy session my PT and I were talking health and doctors and the struggle patients have with not being heard. He also mentioned something that I could not stop thinking about when I watched ‘HEAL.’ He said that he wished doctors understood the power of their words, that patients too often and understandably, hang on what doctors tell them. So, if a doctor gives someone a diagnosis, then a patient starts defining themselves by that diagnosis and this is often when negativity and depression set in. Patients often then resign themselves to a life of discomfort and prescription management of their symptoms. Doctors do not generally teach patients to examine the power of their own attitudes or the importance of the mind-body connection.

The movie ‘HEAL’ was very much about this topic and it talked about accepting a diagnosis but not accepting the prognosis. I think this is exactly what my physical therapist meant when he said he wished that doctors understood the power of their words. In my own experience living with a chronic illness, I look back and remember how naive I was when I was first diagnosed. How important the person in that stupid white coat was to me. I was a novice and and I was scared. I had never heard of sarcoidosis before and at the time of my diagnosis, I was near needing supplemental oxygen. I was too young for that! My diagnosis was tricky as well. I had had several biopsies and they all came back as inconclusive. Finally, my pulmonologist decided that I should have an open lung surgery to remove tissue and determine the cause of my symptoms. At the time, I really didn’t know any better so I agreed. Now, I would ask for repeat less invasive biopsies. Just because they are inconclusive once doesn’t mean they will be again. I didn’t know that at the time.

I had my lung surgery on the right side. Seven years post surgery and I started having horrible right sided rib pain and to me it felt like my rib cage had caved in. The right side of my torso burned, was hypersensitive to touch, ached and I had constant stabbing pains. Looking back, I had had these pains after my surgery and they slowly, over time, got worse and worse. I have a ridiculously high pain threshold so I didn’t pay it much attention until this past year when it really started to limit my life. It was time to have it looked at. I started with my pulmonologist. It seemed the right place to start especially since I also noticed that this pain was making it harder for me to breath and she was the one who had ordered the lung surgery in the first place. She looked my ribs for half a second and told me…”Well, you’ve lost a lot of weight because of your sarcoidosis, so I think that’s all it is.” Really? Come on!

Now, I’m seven years into my diagnosis. I am no longer a novice. Her response, blowing off my pain, was unacceptable. In the past I would have taken it and just lived in pain. I wanted an answer, an understanding of the cause of my pain so I could figure how to go about treating it. I then went to my primary doctor who sent me down what I call a rabbit hole. That’s what doctors do when they don’t listen to you. I knew my pain was related to my ribs…I know my body. He sent me to have an ultrasound of all of my abdominal organs. It showed that my gall bladder was inflamed. Sarcoidosis is an inflammatory disease so the minute I hear that I have inflammation in an organ, I know it simply means my disease is at play. Unfortunately, sarcoidosis is a widely misunderstood disease and when I suggested that the inflammation might be from my inflammatory disease, he said he’d never heard of sarcoidosis being in the gall bladder. Sarcoidosis can show up in any organ. Ever heard of “Occam’s razor?” If you haven’t, it means that the simplest answer is often the right one or the simplest solution is often the right one.

My primary doctor decided that since my gall bladder was inflamed, I should have it further examined. He sent me for a very expensive and time consuming (2 and half hour) scan called a HIDA. It tests the function of the gall bladder, the ejection fraction, if you will…to see how well my gall bladder was emptying the junk it is supposed to filter through my body. Anyway, that test showed that my gall bladder injection fraction was 39%. This is low and shows that my gall bladder isn’t working at its max capacity. The magic percentage for removal is 35%. When I had my follow up appointment to discuss the test results, my doctor had no idea what to do with me. He told me I could see a surgeon about having it removed if I wanted to or not. He left it entirely up to me. Good thing I’m no longer a novice at this! I decided to go see the surgeon, not necessarily to have the gall bladder removed but, to get another, hopefully more educated opinion about it.

In the meantime, I could not stop thinking that all my primary doctor did was reveal a new problem and my rib pain was still not getting addressed. He not only left it up to me to decide if I wanted to see a surgeon about my gall bladder, when I pushed him about my rib pain, he said, “Well, you’ll just have to let me know if it’s sill a problem in the future.” His only answer to addressing it was to throw prescription medication at it, which I refused. I did not want my pain masked, I wanted an answer for the reason I was having the pain. The old me would have taken the medication, let it get me fat and feel miserable. Not anymore! What I understand now, in a fundamental way, that I did not understand seven years ago, is that doctors are there to provide advice based on their best medical education but I decide what treatment is appropriate for me. I will no longer simply settle on what a doctor says or suggests. I ask questions. I fully educate myself.

I went to see the surgeon. I didn’t need to have my gall bladder removed. I’m not having any symptoms that warrant it. She examined my ribs. She didn’t have to but she was really the first doctor to take a good look at them. I appreciated that. She sent me to a pain management doctor. I believe every speciality has its place. There are times pain needs to be managed by someone who really focuses on that and there are times pain cannot be explained but, I kept telling all of them that it WAS my rib cage…that I knew it was my rib cage and that I thought it had something to do with a long term complication of the open lung surgery that I had…Occam’s razor, right?

Chasing pain relief was never what I wanted. I wanted to know what was causing the pain. I knew something was wrong with my rib cage. I just knew it! After an alarming couple of meetings with the pain management doctor in which he went from deciding I have nerve damage and needed injections for that to having disc problems that didn’t show up on my MRI based simply on something I said, he went from wanting to give me nerve block shots in the intercostal nerves to wanting to give me steroid injections in my back…all without ever giving me a physical examination. I was already weary about seeing a pain management doctor. I had already expressed my concerns about invasive treatment, RX medication and the like. My gut kept telling me that there had to be an answer that might not require long term medical intervention through drugs. I finally got him to LOOK at my ribs. He noticed that the muscles were significantly atrophied. I asked if physical therapy might help. He said he didn’t think so but I could try it.

I’ve been in physical therapy now several weeks. The moment I was evaluated by the physical therapist, he knew exactly what was wrong with my ribs and how to address the pain. I have massive scar tissue build up all around the area where I had my open lung surgery. This scar tissue has adhered to the tissues, muscles and nerves in my torso making them function poorly and my torso has grown very week, also making breathing even more difficult. Over the past seven years I’ve slowly taught my body how to compensate for this and, meanwhile the problem has gotten worse. I stopped using those muscles properly because the scar tissue has compressed them. Physical therapy is helping me in a way no medication or injection ever could and, slowly, I am getting my life back. We are addressing the root cause of my pain by breaking up that scar tissue and rebuilding my muscles. We are solving a seven year mystery and all in a way that does not require prescription intervention and will be good for my body long term. The moment I left my physical therapy evaluation, I felt, hope. I am sure that feeling is also having a powerful impact on my progress because I am progressing faster than the therapists thought I would. I joke with them that I am an overachiever…which is true but, the power of hope that they gave me and the way it has impacted how I feel about my body has been the best medicine I could ever have received.

I’m glad I will no longer settle for what a doctor tells me. I’m glad that I’ve learned the importance of taking charge of my own medical care, that I’ve come to understand that on a very deep level, doctors should be our partners in health, not our dictators. While the movie ‘HEAL’ talked about accepting a diagnosis but not the prognosis, I sometimes think we shouldn’t accept the diagnosis either, not until we are fully informed and find doctors who treat us with the respect we deserve as patients. As patients, I also believe in the importance of self education and self advocacy. When you’re in desperate need due to pain, it can be hard to hang on to the idea that “White Coats” don’t have all the answers but in reality, they don’t. They need to listen to us too and when they don’t, we have every right to push back because finding the least invasive ways to address a medical issue are often the most healing and it’s too easy for doctors to throw prescriptions at us, label us as diseased (sometimes incorrectly) and move on to the next patient.

When we are educated about our bodies, our own health situation, when we listen to our own instincts, we are far more likely to have a positive outcome. When we take control, when we seek more than medicine but also look for hope in our healing, when we focus on gratitude and grace and the power of our own inner strength in addition to whatever medical intervention we might pursue, the chances are that we will feel better sooner and will be more in control of our own good health and destiny. Understanding all of my treatment options and having a fuller understanding of the risks and rewards of those options has become the roadmap that I now use to manage my health. I listen to the inner voice inside me that knows me and my body better than any “White Coat.” My disease no longer defines me but instead, is simply a part of me and while I don’t know what the future holds, one day at a time, I will continue to work on taking back my life and living was well as I can, knowing that ultimately, I control my own fate and there is great power in keeping my mind and body connected to one another.

Dear Doctor…

Please listen to me. Look at my lab results, check my scans, review my tests but, please whatever else you do, just listen to me. Listen to me without judgment. Listen to me and help me figure out what is wrong with me. This is why I am here. I need your expertise, I appreciate your expertise but, I also know how complex the human body is. I know this because I live with a rare and often misunderstood disease called sarcoidosis. I know this because I might very well know more about my disease than you do and, I certainly know more about my body than you do. We must work as partners, you and I. If we don’t,  you cannot help me. So, please listen to me.

You have pieces of the puzzle because you know how to interpret all those tests you ran on me. You have pieces of the puzzle because you spent years in medical school and you know things I don’t. I understand this. I respect this. This is why I am here. Remember though, that I know things too. I am the one who lives inside my body. I know what is normal for me and what isn’t and, when I tell you something isn’t normal, despite whatever your tests might show, I need you to listen to me. I am not wrong. I am not making it up.

Doctor, please don’t be threatened that I am knowledgable about my disease and my own body. Please don’t get defensive if I ask you pointed questions. I want to understand what is happening to me. I deserve to understand what is happening to me. Maybe you don’t know. If you don’t, I promise I won’t think less of your skills as a physician if you just say so. It would actually be a refreshing change from being utterly dismissed as a liar. I’ve lived with a rare disease that does strange things to me long enough to know how intricate the human body can be and that at times it is a vexing and imperfect instrument. It seems common sense that tests results are as much to rule something out as to rule it in. They may not always match what I am saying. So, please listen to me.

Exam me Doctor. Don’t be afraid to touch me or look at my body if that will help you better understand why your test results don’t correspond with my pain. My pain is real, Doctor, I promise you that. I need for us to work together to find out why. How can we address my pain if we do not understand the cause? I am not looking for a quick fix, Doctor. I just want the quality of my life to improve. Doctor, do you think that is unreasonable? Doctor, I need you to engage me as an equal, to let go of your arrogance and self proclaimed righteousness that you are superior to me. You are not.

Doctor, I understand that when I tell you this needs to be a partnership, that I must also do my part. I must be self aware. I must be willing to listen, too. Doctor, I don’t want a stopgap measure to address my pain. I don’t want a makeshift solution. I do not want to spend the rest of my life chasing pain relief. I want to know the cause of my pain and I will make lifestyle changes and I will work hard to do what is necessary to address my pain if you will only help me better understand it and work with me to find the best least invasive way to address it. Let’s not go to extremes just so you can get paid or get me out of your office.

I want the very best for myself, just as you would if you were the patient. Doctor, please try to understand that. Not every patient that comes to see you is one size fits all. Not every patient who comes to see you is a drug seeker or a liar or an attention seeker. Please don’t be cynical, Doctor. I am here because I need help. Please, listen to me. Let’s work together to improve the quality of my life. After all, isn’t that why you went to med school in the first place? To help people? The best way to help someone in pain Doctor, is to listen, listen when an open mind.

I’ve said my piece. It needed to be said.  Now all I can do is hope, Doctor, that you will listen.

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.

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.