I am not entirely upside down.
My headaches are getting worse everyday, like how they were last summer. They last for hours and the worse they get, the less coherent I am. I went to the emergency room last year- they thought I was having a stroke. Noise drove me crazy, I was stuttering and slurring my words, my body was numb- and my head, of course, was breaking me apart.
My Lyme Specialist just posed the question- with addition to my eye pain, if I have severe migraines. I am being booked for a nuclear brain scan, and I was prescribed a triptan which I am not even allowed to take yet because the pharmacist has to check if there are serious interactions with my hundreds of other medications. He wondered why no one had considered this before- he once had a lady with similar symptoms. the paralysis, pain, everything, and after the scan, they discovered there was blood flow in only half of her brain.
The numbness I have had in toes, my other hands- some of it is the Lyme, but other issues could potentially be these headaches. I am unsure of what is related.
I don’t know what to do, writing this even hurts, staring, breathing, everything. I have so much work to do, but I actually want to run my head into a truck.
And there are these annoying floaty things in my eye.
Lymenaide has shared PSA of Katerina Graham, Kayla Ewell and Candice Accola to help spreading the word out about this disease. Follow @lymenaide for updates about their campaign and check out their website for more information about Lyme disease and how you can help. Make sure to spread the word out!
Please help by DONATING TO PAINT MAY LYME GREEN and participating in awareness activities this May!
Wow, go Lymenaide.
I’ve been seeing more and more information lately online that is directed to the family and friends of the chronically ill, like those of us with Lyme disease. It really has me thinking….because earlier today I had my own message for family and friends, and the more I thought about it the more I realized they couldn’t handle hearing what I had to say, at least not in the way I meant it.
One of my new favorite blogs to read is Infectious Optimism. If you haven’t checked it out please click on the blog and read it. Today I read a post of what would you tell your family and friends? What I found interesting was so much of what was said were things that these people could not say to their families and friends directly. Candice even mentions that the things she has written have been for others, not for her own family and friends to read. It got me thinking and I realized how willing I am to share (or complain about?) my Lyme disease journey with total strangers, it’s those closest to us that it’s the hardest to share with.
So I sat down and I wrote a few things. While some of the things may not be what you want to read, it’s important to know it’s what is going on in my mind…and what goes on in the minds of so many of us. We can tell each other when we have these feelings, because we understand. But it is very difficult to share with our loved ones who don’t understand. That leads me to point #1.
1. You do not understand what I’m going through, unless you are going through it too. Please do not compare my Lyme disease to whatever ails you. While we each struggle with our own personal hell with whatever we deal with, I can guarantee you that you do not know what I’m going through. I appreciate you trying to understand, but you can’t, and you won’t, unless you get this sick. (And I think I’ve made it pretty clear this Lyme Disease Awareness Month that I’m not letting any of you get this sick!) You don’t want to understand what it’s like.
2. There are days I want to die. I’ve yet to talk to a “Lymie” who hasn’t considered suicide as an option. But we can’t talk about that with anyone, because it sends everyone into a tizzy. (I want extra points for using the word tizzy while discussing suicide). It’s not that we are suicidal, it’s that we fear it may be the only relief we will ever get. I am now beginning my second year with the struggle of fighting this disease. I will gladly admit there have been countless times I wished I had gotten a different disease. One with a death sentence would have been fine, because it would have meant an end to the suffering. Those of us with Lyme don’t know if we will ever find an end to what we go through on a daily basis. We hope to God and fight like hell that we will find an end to it, but the reality is that there is no expiration date on our infections. Think about the worst flu you’ve ever had, and if you’d be willing to live with that EVERY DAY of your life, indefinitely. The worst flu I’ve ever had pales in comparison to what Lyme disease is like. So really think what it is like to wake up and face that reality as your life.
3. Lyme disease ruins us. No more explanation is needed. It literally ruins us. Our bodies, our minds, our lives. It takes our careers away, our livelihoods. We are left to depend on the kind souls that surround us to support and take care of us. And what do people say when they realize this? “At least you still have your life!” To those people, please see #2 above.
4. Hope is what keeps many of us going, but it’s not enough. Please understand no matter how hopeful I am for a full recovery, to get my life back and have the true Eric out and about again, it doesn’t change the fact of where I am today, in the right now. Yes, I need to have hope and believe I can get better and do all I can to fight…but please understand that right now, at this very moment…hope is a far off distant thing, I need to deal with the pain going through my body at this very moment. I need to grieve for what this disease has taken from me. What it has taken from my loved ones (yes, I’m talking about myself…whether they choose to believe it or not I am a gift to their lives!) I need to be okay with feeling the here and now, and I need you to be okay with it too. It’s part of the process…I understand if it is too much for you, so please walk away and come back later. But do not take the here and now away from me, because it is all I know. No amount of hoping is going to take away what I’m facing at this moment.
4. With Lyme disease, we make mistakes with things…like making a numbered list on a website (if I were to pull something off the top of my mind). Yes, you will notice my numerical order is messed up on this “list”. I left it on purpose. It’s been a misconception that Lyme disease only effects your joints, your knees…you know, typical aches and pains type of stuff. Anyone who has had it, can attest to the damage it can do to your brain. I’ve read many things, from the bacteria withholds oxygen to your brain to the bacteria messes up the circuitry…I don’t know how it does it, but the Lyme infection does mess with the mind. It does not however make us stupid. Yes, 50% of the time after I fill the cats water dish I try to put the dish in the fridge instead of on the floor. That does not change the fact that I am an intelligent person, who still has the same thoughts and ideas I did before Lyme. But some days it is harder to find those thoughts and ideas than others. But again, please know that Lyme disease has not made me an idiot (any more than I was pre-Lyme, which depending on who you ask will vary, please start by asking my high school assistant librarian…she’ll be the first to tell you I am NOT an idiot, she’s also the reason I got out of so much detention in high school, but my mind wanders…)
5. Our futures are uncertain. It takes most of us a while to accept that fact. But when we do, please do no tell us what the future will hold. Don’t let us dwell on the possibilities of course, but realize that our lives are on the line here, and we have to have contigency plans. Many of us don’t know from one day to the next if we’ll be able to walk, let alone talk or have an income. Please don’t assume it’s negativity when we are preparing for worst case scenario, even while fighting for the best case scenario. Again, it’s part of the process for us.
6. Let us cry. It’s important. Let us laugh. It’s important. Let us love. It’s important. Love us back. It’s important. Let us scream. It’s important.
To read more from Candice’s blog post on Infectious Optimism Click Here. I strongly suggest you become a follower of hers (not the kind of followers who’d drink funny Kool Aid or anything, but at least what she writes).
I could make a list a mile long of the things we wish we could tell our famly and friends when we become chronically ill, but I’ve chosen a few that I feel are important, from my own life as well as my conversations with other Lymies over the past year. I hope after reading this you will at least know to ask someone you love who suffers from Lyme disease what they wish they could tell you…you’d be surprised what they may just tell you.
From Infectious Optimism:
I posed a question: What is one thing that you wish your family and friends understood about your disease and how it has affected your daily life?
“I wish they understood the isolation that Lyme brings. If they did, I think they would reach out more and maybe I wouldn’t feel so alone on this journey. I wish they would believe me when I say that I am sick. It’s exhausting spending the time and energy trying to convince everyone when I need to use that energy to get well. If I had a recognizable disease like cancer, I bet things would be different.”
“What I want my family and friends to know is that just because I’m walking and talking doesn’t mean I’m here or “alive” (I get this a lot). That I now look at the world through a small lens…and how the pain we ALL share whether from family, medical community, spouses, people unwilling to acknowledge us, to the disease itself is simply unacceptable. ”
“I wish my friends and family would understand that just because I put a smile on my face and attend a picnic, a birthday party, or a holiday event doesn’t mean I’m not in pain, tired, or feeling drained from my illness. I’ve seen many of my friends do marathons or give money for Cancer and other illnesses, but for every Lyme event that I’ve even asked them to attend or even support they can’t seem to give an inch.”
“I wish my friends and family would accept that they really don’t know what this feels like. I wish they would stop comparing it to anything they’ve felt. They forget that I felt ‘normal’ once, and I wish they’d trust me when I say this is far, far beyond that. If it makes sense, I wish they’d understand that they don’t understand what it’s like to have a neurological infectious disease.” -Anonymous
“I wish my family could see “me”, not the me that is the reflection in the mirror but the me inside. The disease has created different layers of masks. The mask that everyone sees is the “fake smile” mask. The part of me that tells everyone “I’m ok” and “I feel fine”, where they know I’m sick but they don’t comprehend how much of an acting role my life is. The next layer is the mask of “reality”, the mask that shows what I feel and that only I can truly see…the layer I wish other people understood. Then there is the “glimmer of hope” mask that symbolizes me before I got sick…That’s the mask you have to focus on to be able to bear wearing the other mask on top. It’s the one that you keep in your heart and every once in a while when the other two masks get a tiny crack in them that one shines through. It’s not that I want my family to feel what I go through, I’m no torturer, I just wish they could still see the real me and not just the diseased me because beneath the pain and suffering the “real me” is still in there.“
I am on a lot, a lot of medication. 10+
I feel like utter shit. There is no other way to describe having a headache for 7+ hours. I feel fucking hungover and I’m getting sick of it. I can only chalk it up to medication, because I’ve felt this way before on days when I properly take my medication and add a tylenol or two to the mix.
And I’m not even abusing, overusing- if anything, I’m not even taking all of my medication but that’s not the cause of the headaches.
I’m just incredibly bitter and grumpy right now and life just doesn’t help, I woke up and late and have been trying to sleep- I missed class and I probably would have fainted on the subway between the headache, dizziness and heat.
It’s 30 degrees out and I would love the beach if I didn’t feel like this and my vision wasn’t so wonky and just, ugh. I just feel overly lethargic and am also a little scared to shower in case I fall over.
I’m trying really hard to be coherent.
I don’t know if I can fake a smile and stop myself from snapping at anyone either, so I’d rather just hide in my hole and curl up in a ball and sulk.
I swear though, if one person tells me today that I wasted my day doing nothing, and that I seem fine I will fucking tear them a new one.
Is it the headache that is making me this irritable, or the medication, or both?
Walk in my fucking shoes. Ugh, if only I could say some of this out loud. (Never mind that I don’t really curse. In general. I must be really out of it.)
From The Healing Journal.
Pills, pills, pills…
There’s my breakfast pill dose. Not too bad compared to some Lymies out there, only nine pills!
The hardest thing about pills is the scheduling. Seriously. Take some pills with food. Take some pills on an empty stomach. Take some pills with certain kinds of foods. Sometimes I’m having a hard time finding time to eat in my pill schedule. No more snacking. No more mindless eating. Nope. Meals are planned. Pills are planned. Everything is planned. I have a schedule to maintain. Sometimes I’ll find myself so hungry, but know that I shouldn’t eat because I need to take my pills on an empty stomach. Then I choose between pills and food. I usually choose pills, just because I’m feeling militant. But of course, I”m losing some weight now. While that may get me back into my black miniskirt, I don’t necessarily like the whole losing weight like this plan.
In order to make this whole pill organization thing possible, I got some of these snazzy pill organizers. You know you’re a Lymie when you use a weekly pill organizer for a single day.
I know own 4 of these little beauties, which means I only have to sit down and open all my pill bottles up for refills every four days. Instead of using one pill organizer for a week, I use it for one day. Each “day” slot I use for a single serving of pills – when I wake up, with breakfast, midmorning,etc. It helps me remember what to take at what time of day, and know that all my drugs for that day (with teh exception of liquids and my refrigerated probiotics) are in one place. Grab and go. I made a chart of all my pills and what to take when to help me when I’m filling them. . It has changed my pill life, seriously. Not having to think about which pills i need when is such a blessing.
I’m finally having Herx reactions. And the antibiotics are starting to take their toll. I really felt great for a few weeks, but last week something shifted. I feel like my adrenals are exhausted (literally, they hurt, and I’m getting dark circles). The sides of my torso ache under my ribcage. I’m feeling a little flare up of the old bacterial vaginitis/yeast infection again (despite taking Diflucan and loads of probiotics). My digestion is slowing down, and I feel cold. Ugh. I’m getting stomach aches after meals again, something that I had let go of quite some time ago. The chills are dreadful. I feel a weird shaky shiver up my spine and into my neck. My skin feels like it is crawling. And I have a searing headache that comes and goes. My feed hurt. My eyes burn. I feel like I have the flu.
It has only been four weeks! How am I going to survive taking this for an undetermined amount of time?!
I’m struggling feeling pity for friends who are sick and complaining about body pain or aches. I feel this way EVERYDAY. I still go to work. Taking a nap won’t make it go away. It won’t get better in a couple days. It will be there tomorrow, and it was here yesterday. It is here now. It is here all the time, just in varying degrees of severity. Even a good day has the presence of a weight on my shoulders. Combined with Seasonal Affective Disorder, my positive spirit is getting a little worn down. Okay, not too severely, I’m still generally bubbly, despite feeling crappy. But I do feel a bit alone, isolated, and misunderstood by most of the people I see everyday. And I do feel like holing up in my apartment, siting on my couch, and watching Law & Order SVU on Netflix.
Ah, yes, Kim, I do understand.
When I was gone last semester, although I was sequestered from, well, reality- and I was throwing up every day, herxing and flying back and forth for treatment, I was at peace. I had the safety of my home, and I didn’t have the stress of real life staring me down. Well, other than the harsh reality that is chronic illness.
When I came back, I prayed for everything to be better. I’m not entirely sure why, because I was no way “cured” (what the hell does that even mean with this disease?) but I just hoped for the best. Everyday I told myself everything would be okay. I told everyone that I was alright, that I was alright.
And for a while, I was. I pretended everything was OK, so it was OK.
And then, then I just wanted to hate everyone. Hate everything, everyone, hate the friends and family that abandoned me for their own priorities, hate the ones that could not deal, hate the disease, hate the medical system. My body, for not resisting, for conforming, for not being strong enough.
I skipped bargaining. At this point in time. I would say the last two years was bargaining, really.
Then, then I broke down. I couldn’t handle anything, the fact that I no longer had control, that I was back here, away from everything- by myself, essentially. Of course I have my boyfriend, and the ample, but amazing friends that were left, but what else?
See, depression. See isolation.
And then, then I was okay. For a while.
I have to say, though, the friends, and my boyfriend of course, that have actively stuck by me, visiting me, calling me, not taking my disappearances personally, picking me up from airports, adapting to my boring life style, waiting for me, encouraging me, listening to me, not complaining about your life to me (that I would “trade” for in a minute), walking slowly, waiting five hours at hospitals for me- the list goes on.
There have been some that were great for a while, but eventually, they fade away. And those that just don’t understand, or can’t cope, or don’t care. God, have I lost so many friends.
But those that stay- you, you are amazing. If I ever let you read this, you know who you are. I would give you a trophy, if I could.
I love you guys, I really do. I would bake you your damn cupcakes if I wasn’t scared I’d poison you.
See acceptance. No, let’s see reconstruction.
Yeah, I’m working on it.
(Of course, each phase of chronic illness is not exclusive to the exact order, and I would say some points – you know, resurface, in a cycle. That’s life, I guess.)
Being diagnosed with a serious illness is among the most significant and stressful events in a person’s life. Such a diagnosis creates enormous uncertainty. “Are my symptoms going to get worse?” “What will the treatments be like?” “How will my life change?” “Am I going to die?” “Can I get better?” Often these questions can not be answered definitively, but available information can give patients a better idea of what to expect. This is why information management is such an important part of coping with illness.
Not everyone will follow the same pattern. Each individual’s unique personality will determine how he or she deals with an illness – and information about the illness – day to day. Patients’ needs for information may change over time as they move through different stages of coming to terms with their illness. They may seek or avoid information about their diagnosis, depending on their attitudes and coping strategies.
Five Stages of Coping
Patients may find themselves experiencing five broad stages of adjustment to a serious illness: denial, anger, bargaining, depression, and acceptance. These stages were originally used by Elisabeth Kübler-Ross in her groundbreaking book, On Death and Dying, to describe the process of coming to terms with a terminal diagnosis; however, they have since proved applicable to patients with chronic illnesses, or for whom recovery is possible but uncertain.
Denial – Denial can take many forms. One person may simply refuse to believe his diagnosis, or engage in activities that physically push his body beyond its new limits. Another person might distance herself from her feelings about the condition by over-intellectualizing. In the initial aftermath of a serious diagnosis, denial can allow patients time to prepare themselves for the reality without becoming overwhelmed. However – as in most situations – denial can quickly outlive its usefulness, preventing people from coping with their emotions and participating in treatment.
Anger – The loss of health can provoke anger. With no suitable target for blame, anger can be hard for patients to express. When it is allowed to overwhelm and control daily life, aggressive anger can push away the close friends and family members needed more than ever for support during times of illness. It can also lead to passive resistance to treatment that is detrimental to health. However, when anger is harnessed, its energy can be channeled into positive action.
Bargaining – During bargaining, a person attempts to dispel uncertainty by rationalizing: “If I’m ‘good,’ or if I do this or that, I’ll be okay.” Patients may “shop” for every medical treatment available, or for more palatable diagnoses. Bargaining often represents a search for lost health and other aspects of their old, disease-free life. Like anger, bargaining can lead to positive action and active participation in treatment, but unrealistic expectations can set the stage for disappointment.
Depression – Depression is a normal reaction to intense stress. This is often the time when emotional defenses are exhausted, and patients fully experience the sadness and pain of their situations. People going through depression may suffer from insomnia, inability to concentrate or experience pleasure, and feelings of hopelessness and anxiety.
There is a difference between the reactive depression commonly experienced after diagnosis of a serious illness and clinical depression, which is much more severe. Clinical depression is itself a serious medical illness which can’t be willed away; it requires treatment with medication and/or counseling. The symptoms of clinical depression interfere with daily life, sometimes to the point of incapacitation, for long periods of time. Clinically depressed people may have frequent thoughts of death or suicide.
Depression is one of the hardest stages of adjustment, but like all the others, it can also be useful and healthy. It can represent a much-needed opportunity to take a break from being cheerful, brave, and having everything under control. Patients experiencing depression can often work through it with reflection and allowing themselves to express their feelings, as well as improving their diet and exercising as much as they can. Some medications may cause depression as well; in those cases, a doctor may be able to adjust dosages or timing to minimize the effects.
Acceptance – To accept is defined as “to receive or take in, hold or contain.” Another definition refers to acceptance as “being done willingly or gladly.” Healthy acceptance of a chronic illness, however, incorporates an element of defiance or refusal to give in. It is a delicate balance between “containing” the illness within one’s self, and allowing the illness to “contain” or overwhelm one’s entire life.
COPING WITH CHRONIC ILLNESS
(This is adapted from the book After The Diagnosis by Dr. JoAnn LeMaistre.
Copyright Ó 1985, 1993, and 1999 by JoAnn LeMaistre.)
JoAnn Le Maistre received her Ph.D. in clinical psychology, delivered a daughter, and learned she had multiple sclerosis all within the period of a few months. Dr. LeMaistre has developed a successful practice counseling patients and their families. She is a sought-after speaker, lecturer, and teacher. Her books, After The Diagnosis, and the hardbound edition, Beyond Rage, have helped thousands of chronic illness patients, their families, and health care providers to cope effectively. Her daughter has now graduated from college. And Dr. LeMaistre has learned to live a full life, in spite of the handicaps of her MS. She is an inspirational example of what it means to be able-hearted when you can no longer be able-bodied.
Traditionally, the experience of serious illness has been approached in two ways: (1) a gloomy perspective of resignation, self-denial, and helplessness, or (2) a Pollyanna approach that denies altogether that there has been a real trauma. Both of these perspectives distort and disguise the reality of chronic illness.
The first perspective views the chronically ill person as a failure. This is the patient who does not respond to the “miracle” of modern medicine, and somehow the lack of recovery is often perceived as the patient’s fault. This attitude of blame accounts for some of the worst psychological abuses of patients by health practitioners and caretakers, an attitude typified by the too-frequently heard statement, “Stop complaining. You simply must adjust.” Unfortunately, the sick person may also adopt this punishing attitude toward himself or herself. Sadly, the word “adjust” too often means “resign,” “settle for less than a desirable existence,” and “surrender.” At its worst, “adjust” is just another way of saying “You are now a nonperson without the right to experience strong passions, desires, or fierce and unyielding hope.” All the anger and blame inherent in this attitude is misdirected: the patient rather than the disease becomes the target.
The Pollyanna approach is typified by — and fueled by — personal stories or testimonials of complete recovery from extreme illness or disabling conditions. These stories tug at the heartstrings and catch the fancy of all who read them. Besides creating false hope by overplaying the likelihood of complete recovery, these stories consistently underplay the sadness and feelings of worthlessness that are part of the legacy of any physical or emotional trauma.
Sometimes, it is useful in social situations to present yourself as a Pollyanna. When meeting new people and situations, it may be an advantage for you to let others think you have mastered your disease. The anxiety of other people is reduced by not having to confront illness. The danger is that this Pollyanna image may create a barrier between you and the people who can offer real help.
The resignation viewpoint holds little hope; the Pollyanna viewpoint holds little reality.
The approach I propose took shape as my own understanding developed. My experience as a patient, observer, and psychotherapist has allowed me to see the many ways in which people creatively adapt and use their individual internal powers of wholeness (the sense of being emotionally intact) to reduce the destructive effects of severe physical limitations and accompanying depression, rage, and fear. The wellness approach I present stresses both the subjective experiences of loss and your responsibility for looking outward to reestablish quality in your life.
Central to wellness is the concept of adaptation — the flexible, creative use of resources to maximize your choices and experiences of mastery. This is the key to creating and sustaining a sense of inner tranquility in the face of difficult realities. There is no need to deny grim facts of existence or to pretend to others that all is well when inside there is little except torment. To be psychologically well while physically sick involves the belief that your personal worth transcends physical limitations; you need positive self-esteem for true adaptation. This belief in your self-worth rarely emerges until what you have lost and grieved for stands second in importance to precious moments of inner peace and joy.
Each stage in the progress toward wellness involves loss, grief, and acknowledgment of internal pain. During difficult times, emotional pain can engulf your life. All sense of time and proportion fade. The scope and intensity of the psychological pain fluctuates day to day. At times, it carries you closer to invaluable inner resources. At times, like a dangerous undertow, this pain drags you far from your recognizable self. It may seem that you have no reason for living or that you are living only to experience pain. Even so, the reason for living is life. The incentive for becoming psychologically well is the potential for the future.
Illness is an emotionally as well as physically depriving experience. It can do lasting harm by threatening a person’s sense of well-being, competence, and feelings of productivity. At their worst, emotional reactions to illness may culminate in the feeling that life is meaningless. I do not share this belief; but I recognize how stress can make you feel this way.
Illness is a process, and like all processes it has different stages with different characteristics. We will discuss the stages below. The stages can occur in varying orders; often they are repeated. If a sick person lacks emotional support or a necessary feistiness, the process can stagnate, and one may be mired in one or another phase of the emotional transitions taking place. The emotional process begun by illness is a highly varied and individual one. Not everyone gets bogged down. Not everyone experiences all the stages discussed in the following sections. The stages are not part of a once-through program, but are repeated as symptoms recur or losses come about.
The level of adaptation is an upward spiral in which coping mechanisms, learned one at a time, can be combined with strategies learned at other times to make each bout of illness less emotionally upheaving.
How people react to chronic illness depends on many conditions. Three deserve note. The first is the severity of the illness. The very sick must put all their energy into healing and may not have the luxury of energy left over for emotional growth.
The second is the social support available. If you are willing to ask for help and you have a wide support network, you’ll have an easier time than if you are isolated.
The third condition is the preillness personality of the person. If you have always been pretty resilient, you are likely to have resilience in coping with the illness.
The emotional trauma of chronic physical illness is caused by loss of a valued level of functioning, such as the ability to drive or dance, for example. The chronically ill person not only suffers the loss of immediate competency but is deprived of an expectable future. No one’s future is ever guaranteed, but most people become accustomed to looking at the odds; if I invest my energies in a particular direction, I can be reasonably certain I’ll reach a desired goal in that direction. When illness intervenes, all past efforts may seem irrelevant — and in fact they may be.
In the face of such losses, to experience fear, anger, depression, and anxiety is normal. It would be abnormal to deny that your health and your life had changed for the worse. Serious emotional difficulties are more often the lot of people who do not acknowledge the emotional stress they feel and thereby bottle up depression or anxiety until these feelings are so powerful they break through their defenses. By the time an emotion becomes this powerful, it is much more difficult to survive its impact without severe scarring.
Is there anything that can help overcome the displacement and depression caused by physical loss and the loss of goals and dreams? I think the answer is an unqualified YES!
Goal-oriented striving, any experience of mastery, any outside acknowledgment of competence, a well-tuned sense of humor, any experience of joy, and the constant striving toward an inner state of tranquility are the aids that help overcome the displacement and depression of chronic physical illness.
These aids are of critical importance in the stages of the ongoing emotional process. I identify these stages as crisis, isolation, anger, reconstruction, intermittent depression, and renewal.
These are good summary categories for the whirl of emotions triggered by illness and we will take up each stage in turn, although in the course of an individual illness they may not always proceed in this order.
In the crisis stage, the patient is seriously ill and very frightened. Both psychologically and physically he or she has a decreased ability to respond to others. The sick person’s energies are directed inward toward healing, and controlling panic. The patient is often too sick to even be frightened. Events are often confused. Time is distorted. Disorientation is common. At these times we fall back on our innate biological ability to heal. The support network, on the other hand, is feeling a highly stressful increase in anxiety, especially as it must carry the full responsibility for arranging for medical care, covering finances, and seeing that children’s lives, if children are involved, can go on with a minimum of disruption. The family’s anxiety can be energizing. The family may feel a need, sometimes an obligation, to be highly supportive of the patient.
By and large, everyone responds well in a crisis. Everyone knows the patient is terribly ill. And they respond. Unfortunately, those most affected by the patient’s illness do not always receive the support and help they need at this time.
Friends sometimes respond by showering the sick person with cards, flowers, and get-well-soon wishes. Unfortunately, much of this is misdirected. The very ill person often cannot appreciate these signs of concern and affection. Patients often feel burdened by all the thank-you notes they cannot send. Friends can often do more by helping the family and other members of the support network to deal with the medical system, the incoming phone calls, and to give direct support when it becomes clear that the idea of “get well soon” has no relevance to chronic illness.
During the crisis stage almost all of the patient’s energy and attention are focused on responding to the physical onslaught of the illness. Surviving is the primary concern.
In addition, the patient and the family must cope with the fear of an unknown and unknowable future. It is all too clear that the comfortable patterns of the past have been shattered. It is not clear at all what may lie ahead.
In time, the acute nature of the illness may abate. But total recovery does not occur, and the illness persists. There is a dawning awareness of everyone’s part that the situation has become a chronic one. There will be no full recovery. There is so much uncertainty about the future that the patient may not be able to sleep at night and may seem restless and distracted during the day. The lack of an expectable future constitutes a major assault on one’s self-image.
The patient’s anxiety often produces a stiffness or frozenness in dealings with others and oneself. There is a belief, usually partially justified, that no one can understand the devastation of the losses. Isolation most troubles patients who have been the most independent.
The family has often exhausted itself during the acute crisis stage. Family members may become aware that they are angry, fearful, and disgusted about the sick member’s situation. Both patient and family members retreat into themselves and their thoughts, now haunted by the knowledge that life may never be the same.
Friends also tend to give out at this point — the idea of chronic illness is really terrifying to most people. After an initial burst of energy, some friends may find it too overwhelming a personal struggle to continue having contact with either patient or family. Some patients have been devastated by an apparent lack of concern shown by people for whom they care. I say apparent because often failure to contact the patient means that friends may care but don’t know how to act.
This leads to a thorny question. How comfortable are you in asking for help? What does it mean to you to have to ask for help?
These questions begin to surface during the isolation stage, but actually they are part of everyday living for most chronically ill people. To feel really comfortable allowing others to help you is an art that must be learned and practiced. It is difficult to understand that relying on other people when it is necessary does not indicate weakness or failure. One of the emotional barriers to asking for help is a strong feeling of guilt about having a disease that makes one need help. During the isolation stage, patients look inward and experience many negative feelings about themselves.
In the isolation stage open communications are vital. Blame must not play a part. Talking about feelings is very important. Communication and sharing are ways to break the isolation.
The sick person has been suffering severe upset, terror, anxiety, and helplessness. Add to this the sense of injustice, unfairness, and senselessness of being struck down by a disease, and the result may be a rage reaction of tremendous proportions. Often the target of this rage is the patient himself or herself. The ultimate, most dangerous, expression of this rage at self is suicide. The commonly experienced feelings of despair may result in contemplation of suicide.
There are two reasons why the patient targets himself or herself for these feelings of anger and despair. First, it is almost impossible to be furious with fate; there is no external opponent. In order to provide some meaning for what has happened, many people irrationally conclude they have bought disease on themselves by being faulty or wicked in some way. It is difficult to keep clear that it is the disease that introduced the disruption into one’s life.
Another reason for suicidal thoughts is that illness breeds a sense of helplessness. The chronic disease cannot be wished away. The disabilities are there to struggle with every day, and the threat of a major recurrence or increase in symptoms may be a constant anxiety tucked away not far from consciousness. With the feeling that the underlying problem cannot be solved and the belief that it is the patient’s fault, many patients suffer intense unhappiness. Sadly, the patient’s feeling of self-blame is greatly reinforced by society. Often families are unable to help because they are angry at the patient. The changes in their life style are directly attributed to the patient and not to the patient’s illness. Even supposedly neutral medical personnel may be furious with the patient for having a chronic condition they cannot cure. This anger directed at the patient from all sides is psychologically understandable but it is very destructive.
The flirtation with suicide, the patient’s worst hazard of the anger stage, is a statement of the extent of one’s rage with oneself and with those one cares about.
Another serious problem of the anger stage is the strain on the family. Families who fare better during this stage understand that the sick person is not the same entity as the disease and they see that the whole family is in this predicament together and are committed to coming out of it as well as possible. Family members need to devise ways to nurture and adequately support each other in order to cope with both the anxiety and the practical life changes accompanying chronic illness.
Anger is the stage most hazardous to your emotional well-being. It is also where most people get trapped. Fear and anger are disruptive emotions egendered by a sense of loss of control. Take back control in small steps. The basic reasons for the anger, in most cases cannot be avoided. It does no good to assign blame. The response must become task-oriented. “Today I will walk the length of my room, or call a friend, or answer one inquiry.” Striving toward a goal, even in small doses, is an antidote to anger. Patients, family, friends, and helpers should all focus on the strengths that remain, on the accomplishments that can still be achieved. This basic rule is a key to dealing with anger.
The sick person may now be feeling much stronger physically or may have had enough time to begin mastering new living skills. Important decisions or new social contacts may be in the picture. What is common is a growing sense of safety based on new competencies. Moods are happier and the difficulties seem a bit further away. The sick person is learning the possibilities and limits of the new competencies. Friends are selected on how well they react to the fact of illness. The family establishes new routines — or it dissolves.
What exactly has been reconstructed? Certainly it is not life like it was before. Instead, it is a reconstruction of the sense of oneself as a cohesive, intact entity. The reconstruction takes on many concrete aspects, such as the development of new skills, but the most important value is emotional. When a customary pattern of living has been shattered by illness, the patient fears that he or she is longer recognizable as a whole being. It is the reemergence of a positive self-image that constitutes reconstruction.
Often people do well for a few weeks and then are devastated by some incident. But each experience with trusting and succeeding is a building block for the next step of reconstruction.
Now that everything is looking brighter, everyone is tempted to relax and may, therefore, be caught off guard when a significant depression recurs. The elation associated with new skills can give way to new feelings of despair as the patient recalls how much simpler it was to do routine things the old, preillness way. Nostalgia and grief may combine to produce sadness and discouragement.
Many people know exactly when they expect to hit these rough spots. Medical appointments and anniversaries are notable examples. Seeing a doctor, who confirms your intuition that your condition is not improving or is worse, often leads to depression. So may the third anniversary of having to give up the car, the first anniversary of a divorce, the time of the year the physical problems first occurred — the list is endless. It may be best to seek counseling during these difficult times as a way of shortening their duration and providing new understanding of what all the feelings of loss are attached to. New understanding brings new resilience; it does not make the losses go away.
Intermittent depressions seem to combine two feelings. One is the awareness of loss of function that occurs several times a day in the course of ordinary living. But clearly, an amputee does not become depressed each time there is a reminder of the inability to walk normally. There is a second element involved. If the awareness of loss arouses a distinct image of what life would be like if the amputation had not occurred, and if this fantasy has strong emotional meaning for the person, depression is very likely. This image of how you would be without the illness I call the phantom psyche.
The phantom psyche is usually not far from consciousness. It is the self-punishing mechanism whereby the chronically ill person continually erodes his or her own self of self-worth and competence. “If only I didn’t have this arthritis [or whatever illness] I could still be mountain-climbing [or whatever activity].” “If only” statements are the bread and butter of the phantom psyche. They contain harsh judgments of worthlessness. In a happier mood, you might experience the same feeling of loss, but say to yourself, “I really miss mountain climbing, but at least I can take a walk today.”
When the phantom stalks, the soul is uneasy. Doctors and friends often mistake the desperate pain of knowing one’s hopeful fantasies will not be realized for self-pity. “Just stop feeling sorry for yourself” so completely misses the point that it is tragic. It is very difficult to have a sense of self when you’re depressed and are afraid that you’ll never again be of value to yourself and others.
Self-esteem increases proportionately to successful experiences of independence and purpose, whether the success is remembering what time to take a certain medication or walking better after months of physical therapy. The phantom psyche — those unrealistic expectations you have for yourself — cannot compete with the heady gratification of hard-won success. If family, friends, and medical personnel can appreciate the triumph in being able to struggle, you feel even more triumphant. Well-wishers too often make the mistake of praising a sick person for progress without acknowledging how difficult is the ongoing battle against the inertia of chronic disease.
We all have periods when we feel overmatched and not up to the struggle. But as long as we pay attention to the struggle, we will get through the day. We flounder when we set unrealistic standards, or cannot grieve for what has been lost, or cannot start each day afresh. Depression can be tackled despite the physical complications that try to drag us down.
The losses, and the sadness they cause, never go away entirely. There is a sense of lingering regret for all the capacities that have been lost. A person who has mastered the technique of using a wheelchair can feel very proud of this achievement and know full well that this device is essential for retaining an active life. But the person does not have to like it.
It is not necessary to like or to resign yourself to the compromises you need to make to get on with living. It is only necessary to acknowledge that changes in life style and skills have to be made. Acknowledging that your skills are different from your preillness days is not the same as “adjusting” to illness. There is no surrender involved, only growth — the creation of new options through new means.
The creation of renewal comes from the experiences that teach us not to waste the present on fearing the future.
The truly handicapped of the world are those who suffer from emotional limitations that make it impossible to use the capacities and controls they possess. If you have a chronic disease, you need not be emotionally handicapped if you continually strive to be able-hearted. Able-heartedness is within the grasp of all of us. I don’t think of able-heartedness as a permanent, static state, however. Developing and maintaining this quality is a process that ebbs and flows, depending on how helpless you feel. Even if you feel in the grip of hopelessness, you are behaving in an able-hearted way by any expression of interest in another. Shared interest and compassion is what establishes meaning and purpose in life.
When you feel discouraged, you feel all alone — and there is some truth to this feeling. But in many important ways you are not alone. There are hundreds of people in your city who have similar feelings at times. If disturbing thoughts wake you in the night, know there are other struggling with their pain. No one can share your unique experience, but there is kinship and a strength among all of us who are no longer able-bodied.
There are some positive coping skills that are required by unavoidable health changes. These are summarized below.
Make Your Expectations Realistic
The most important aspect of making expectations realistic is the recognition that they are time-limited. “What can I do now on the basis of the way I feel at this moment?” If you have two minutes, what are you going to do? I counsel people to check with themselves to find out what they want to do. Illness can make you feel that you must surrender all goals, all wishes. But that is not necessary.
Make your expectations run like this. “Within the limits of my physical ability I will do whatever it is I want to do for as long as I can.”
Approach Problems Actively
A second essential skill is an active approach to problems. What is an active approach? It consists of defining the problem and determining the outcome you want. It involves trying to ensure that any energy expended constitutes a step toward the solution. Rarely does it constitute the complete solution. The admission “I cannot do something” is often the first step in solving a problem realistically.
Define what you want and then use every ounce of creativity you possess to determine how you are going to make it happen. Creativity is not impaired by illness. When you define the problem you figure out how many facets there are to achieving some kind of resolution, and then you expect yourself to make only that part of the effort that is realistic. What this means is that you need a broader sense of community. There are going to be a number of things you cannot do alone. Your dreams do not have to change. How they are realized will probably change. The creative, flexible use of your energies and creativity to get as much satisfaction as possible is your mission.
Seek Appropriate Help
The next skill to learn is to ask for appropriate help. It is not a moral weakness to ask for assistance, but many can probably recognize the tendency to regard asking for help as shameful. It is a limitation if one does not know how to determine whether or not assistance makes sense. It is a limitation if one is harsh or angry with the helper. Asking for help can become a more and more graceful skill. It is certainly not the first choice for people who would rather do everything themselves, but it should be your choice if you are going to pursue what you need and want — when you cannot do it alone.
If you have a hard time asking for help, consider what you would do if you were fully able-bodied and a friend of yours had your particular problem to solve. What would you do? Do you see yourself denying help as you gear others might deny you? Would you be upset if your friend asked for the specific help that was required? Chances are you would feel fine about helping out if you could. You would just do it. Try to be as kind to yourself as you would be to another when it comes to asking for help.
Handle Your Anger
The next skill involves learning how to become emotionally efficient and energy conscious. Energy is a tremendous problem for those with chronic illness. There is none to waste. Some of the most wasteful expenditures of energy are for resentment and anger. These emotions are not bad in themselves, but they do wear you out.
If you are angry, it helps to have some consciousness of what you are angry about, and whether you want to angry about that. Sometimes you will want to be angry because that is the appropriate response. Sometimes you will want to be angry because it is more efficient to be openly angry than to deal with bitterness or other forms of calcified anger. The better you get at being direct about anger early, the more energy you save and the more efficient you are. Surprisingly, many people do not know how to recognize their own irritation or anger. If you are feeling irritated, it might be helpful to be assertive, even if in the short run you feel uncomfortable.
Another skill that is especially restorative for those with illness is to put positive energy back into the world. You can do this with family, friends, with self-help groups connected with your illness, or with community groups. Put your talents, your compassion, your knowledge, and your experience out there in a way that can benefit others. Be a good friend to yourself and don’t overlook your finer qualities.
If asking for help is a skill you possess, then there is even more constructive energy available to invest in the world around you. Obviously, one of the things illness can do is to constrict your social world. Sometimes, this leads to the perception that there is nothing you can do for others. That is just flat-out wrong. If you have exhausted your own resources in looking for ways to participate, you can call organizations that are concerned with your illness, like the Arthritis Foundation or the National Multiple Sclerosis Society, as well as other national and local self-help and research organizations. They can offer suggestions, and may have specific ways that you can help them. People volunteer because it feels good.
Live In The Present
Another skill, that is a challenge to learn, is to look neither too far backward or too far forward. If you are only looking backward, you are giving up on yourself emotionally. Your losses are major issues, but losses do not get people through one day at a time or one day after another. Losses are not a good reason for living. If you use all your emotional energy considering how things were before the illness and comparing it to how things are now, you are being very self-punishing. If you sense this going on, you need to be extremely aggressive about rejecting this.
Illness does not diminish one’s humanity. Mobility and physical comfort decrease with illness. Fear and worry increase. But illness does not diminish humanity. Be humane to yourself. Avoid dwelling on how good things were I the past compared to now. Also avoid distant future fantasies. There is no way to know what will happen some years hence. And you know, there never has been a way to know the future. If you are not stuck in the past or tormented by distant future images of what should be, you have the opportunity to manage this day with awareness. Living in the moment with consciousness, patience, compassion, and appreciation for yourself and others lets you get on in a creative way, in spite of the pain of your losses.
Cherish The Good Times
The last skill I would commend to you is to pay attention to the positives. This can only be done if you have already mastered the skill of living fully in the present moment. You go through every twenty-four hours with enough of yourself available to the world that when something positive happens you let it in. There was a rainbow yesterday. There may have been an interesting interaction between you and the grocery clerk, or you had a close, warm exchange with someone you care about. These are the kind of positive moments I mean.
These are moments that need to be framed and stored to be used on days that are much harder. If we are in a quagmire of negative emotion, we can turn anything into proof that there are only painful things in the world. This final skill is learning how to hold onto the positives, to cherish them sufficiently that they do not drop out of your repertory of significant life events.
Once you notice the positives, how do hold on to them? The best way is to slow down — to use relaxation, meditation, and your own internal capacity for joy to feel that moment inside. Let it resonate within. This allows your emotional commitment to be fully focused on the process of life. Be as emotionally able-hearted as possible, despite physical limitations.
What all these coping skills have in common is that they are daily necessities. You don’t just get them down pat once and then forget about them. You need to use these skills frequently. Every day is going to give you something different to try to manage. You need these well-practiced skills to succeed.
The circumstances you face may at times be miserable. Nothing can alter this reality. Trust that you will learn from each stage and from each cycle through the stages. Learn to trust others enough so that when the situation seems unbearably stressful, outside counseling and psychotherapy can be sought. Renewal cannot always be attained without help.
If these ideas have reached you at any level, you have already begun the process of renewal. You are adapting in the face of great difficulties. There is no right way to come through the ravages of unavoidable health changes. But I have tried to show you ways to remain an active agent in your own life.
You are not alone. None of us is alone. We may not know each other yet, but there are kindred spirits. A single treasured personal relationship makes the path bearable.
I wish you a safe and thoughtful journey on what is truly a road of hope. I travel it with you. You have a companion and you have hope.
God, my fucking eye hurts. And do I hate to swear. I’ve been waking up with feels like “medication hangover headaches” but I’m not entirely sure. But they do make me want to curl up in my bed and sleep, for you know, at least a few days. I had my MRI at 2 AM on Friday. I had to cab home- if I had bused, I would have been home at like 5 AM. And then I woke up at 6 AM to sign up for courses. Oh life, you are dear.
The buzzzz, buzz of the MRI, it sounds like nintendo. I got to keep the ear plugs they put inside the giant noise cancelling headphones, and a oh so very attractive hairnet. The earplugs, though, won’t do much for the ringing in my ears. Maybe for my nagging mother, though…(Well, alternatively, I suppose I can just hang up the phone, I can’t imagine how much use ear plugs would be over the telephone anyways…)
My housemate just told me that I’m “so happy all the time.”
I told her that if I wasn’t, I’d kill myself. I was joking. Mostly.
I remember in my first year of university, I used to go to the same food place pretty much every day, so much that I got to know the guys working there by name. (He’s on my facebook, actually.) He told me, Deena, it’s exam time, everyone else comes in with a depressed look on their face- but you, you always come in with a huge smile on your face.
Yeah, well it’s true. I guess. I never really noticed until people started pointing it out.
No, what’s the term- Negative Nancy, Debbie Downer? It’s not even really pretending to be happy, per se. In real life, I try to be positive, at least. I’ll let my worries out here, but it may not reflect how I feel 24/7. That being said, being um, upbeat all the time (well, sometimes it can be tiring when I grit my teeth for the sake of others, but I am genuinely a giddy child, no artificial behaviour there) can mislead people. Just because I don’t look sick doesn’t mean I’m feeling great.
But then people forget. They forget my situation is different, they forget that yeah, sometimes I do need accomodating. They forget why I can’t always interact with everyone in the same way. And they take it personally.
When will they realize- it’s not about them?
It’s made me draw away from them, because really- when I needed them most, they were causing unnecessary problems.
Some holes you really can’t sew back up, no matter how hard you try.