Living Well: The Need to Grieve

Living Well: The Need to Grieve

By Joy Selak, Columnist

Over the last two decades, I’ve learned a lot from being sick — how to make lifestyle changes, access better health care, stand up for my needs and rights, and be more sympathetic for the suffering of others, to name a few.

But one of the most important lessons illness has taught me is the need to grieve. In order to build a meaningful life that contained illness, I had to let grief take me to my knees, and mourn the loss of the person I once was and the life I had planned.

Woman in painThe American health care model is based on fixing things and the more dramatic the intervention, the better. We speak of illness in the language of war. We fight it, we vow to beat it, we refuse to let it defeat us. Surgery, expensive diagnostic equipment, revolutionary new therapies are all valued. People who stay sick are not valued.

Given this model, it is understandable that during the early years of illness most of us believe in time our trial will be over, the doctors will figure it out, the treatment will finally take hold, and life will return to normal. The word “chronic” is not yet part of our vocabulary.

For me, the day finally came when I had to admit, “The life I had is gone. I will not do all the things I planned. This illness is not going away.”

That admission broke me and allowed me to grieve. It first happened when I had to leave my professional career and apply for long-term disability. It happened again two years later, when I finally won the claim and was deemed officially disabled. And it happened yet again a few years after that — when I got another, painful chronic diagnosis on top of the three I already had.

I learned to let the grief take me and last as long as it lasted.

When I came up out of the dark, I had a question to answer. “If I can’t be the person I planned to be and I can’t have the life I planned to have, who can I be? What can I do with this life?”

My grief became the foundation upon which I built a new and meaningful life with illness.

I see a lot of rage among patients, especially those in pain. It’s understandable; pain patients have very real complaints and our health care system needs to change to better serve us. But sometimes I think the rage that goes on and on, like an endless scream, is also a way to avoid the need to grieve.

There are big losses in life — a divorce, the death of someone dear, and long-term illness. All these losses alter the future forever. All require and deserve grieving as part of the journey. We can’t begin the next chapters of our lives until we do this necessary work.

There are blessings in the quiet life that illness demands, but unless we travel the deep, dark passageway of grief, we are unlikely to find our way to them.

Joy Selak

Joy Selak

Joy Selak lives in Austin, TX. She has been diagnosed with Interstitial Cystitis, Fibromyalgia, Mixed Connective Tissue Disease and Trigeminal Neuralgia.

Her book, You Don’t LOOK Sick! Living Well with Invisible Chronic Illness, takes readers through the four phases of chronic illness experience — Getting Sick, Being Sick, Grief and Acceptance, and Living Well — and is written from the alternating perspective of a patient and her physician.

Joy has two websites, Joy Writes and Chronic Invisible Illness. Her blog is You Don’t LOOK Sick.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Authored by: Joy Selak, Columnist

There are 15 comments for this article
  1. Joy H Selak at 7:47 am

    For those of you who feel your grief just goes on and on endlessly, I am reminded of the marriage counselor I saw during a long painful divorce. I was so devastated and asked her, “When will this ever end, this pain, sorrow, regret, grief? I just seems to go on and on.”

    She said, “It will end when you get bored with it.”

    I don’t mean to trivialize the grief at all, and I also understand it isn’t a single event but a recycling journey for many of us, as life changes and new symptoms or diagnoses emerge. But my experience with illness, and the divorce, was that at some point I became curious about what might be past the grief. I began to see a horizon rather than a hole. There just weren’t any more tears left.

  2. Jeanne at 11:50 pm

    Thank you not only for your article, but for being so understanding of the pain and misery those of us with multiple chronic conditions endure. I have a neuro physcologist who is my person who helps me understand and deal with especially the fibro, myofascia, chronic fatique, lupus, diabetes, RA, arthritis, etc. I’ve found that after the pain upon waking, I need to start with prayer of thanksgiving — I’m thankful for a soft bed, pillows, a home to live in, a trailer to travel in to see my daughters & their families in states — days and days of travel away!, warm clothes, and cool clothes for the heat days, for my pet, for food I can eat, ( as I can’t wear my dentures anylonger), for vision to see, ears to hear, my family, my husband, Gods word, Gods Spirit, and Christs sacrifice, and knowing that God is always with me and will never let go. I have to think a little to get my mind going on what all I have to be thankful for. It just helps a little, and I’ll take any little bit of help I can get. I also do mild excercises in a warm! pool, and take medications and many nutritional supplements. I’ve been ill for over 30 years.

  3. Veronica at 9:19 pm

    I am living with Fibromyalgia, a literally constant headache, and too many other conditions to list here. About half of these conditions are untreatable or have resisted all treatment thus far. I have a question that is crucial to how I will face my future—a question I have been seeking an answer to for far too long, and it being unanswered is contributing to a bit of a downward spiral. So, I am hoping that someone can tell me…please—how I am supposed to grieve when it only serves to perpetuate, or even exacerbate, that which is a large part of the very reason I need to do so? I want to allow myself to fully grieve the loss of so much of myself to chronic pain and illness, yet that is a very difficult prospect, because, for me (and I suspect for many others), grieving almost invariably includes crying. You see, I know that crying can help us cope, and relieve stress…but what does one do when the act of crying makes the pain worse, as it does for my constant headache of 16 years? When the pain of that headache is at its worst, crying is excruciating—and yet; that pain, and the despair that accompanies it, often make it impossible for me *not* to cry. So, the tears fall, bringing with them more suffering, feeding into themselves until I have cried myself into a state of emotional numbness. And, that is where I am now, and most of the time—numb. Largely, anyhow; I am lucky to be able to derive happiness from a few good things—my faith, my fiancé and family, and my online friends (I have no in-person friends, due to moving and the fact that one of my only friends decided she didn’t want to be associated with me any longer). Otherwise, I am relatively numb, most of the time. I live in a state of semi-conscious denial, and my seemingly pleasant affect is largely pretense. I don’t see how this can change any time soon.

  4. Joy H Selak at 3:59 pm

    This is so touching and I know many share your frustration, as have I. I can’t presume to walk in your shoes or know how your life is each day. I only know that enduring endless grief and frustration was worse than accepting life as is really was for me and working with that. It was my ongoing life that mattered, and it had to mean more for me than yearning for what used to be, even if that meant accepting that pain each day and not fighting against it. Hope this helps, I feel for you.
    JOY

  5. Veronica at 2:09 pm

    If we must allow our grief to “last as long as it lasts,” I suppose that means that my grief of over 5 years is something that I have to accept as something that may last another 5 years, or 50 years…should I be fortunate enough to live that long?

  6. Teresa at 8:42 pm

    Cndi, grieving for a major loss(s) in our life is not something that you “shut off” or “move on” from without dealing with your emotions first. If you find yourself continually grieving without any relief, then a seeing a professional is important. Depression seems to go hand-in-hand with this illness. I have had FMS for 16 yrs. now and I still grieve periodically because of the loss of my quality of life. Keep sharing how you feel and join a support group. It really does help knowing that you are not suffering alone. God bless.

  7. Jean Kilbourne at 5:25 pm

    Your article is a real eye opener for me. Problem is after 30 years with fibro I still cannot accept & continue to grieve ongoing. It never stops. I want my body back! I want to be able to do what I used to do without paying for it! Just something! Paint the hallway. Exercise. Scrub something. Anything! And not having to deal with or explain myself to the medical community or anyone else ever again would be heaven! Not having to answer any more stupid questions. What’s your pain level? Well it depends on what day it is, what hour it is . Who cares? I’ve done it all. Psychotherapy, cognitive, antidepressants, accupuncture, biofeedback, other meds, homeopathic, chiro, pt, etc etc. HOW DO I GET TO THAT PLACE OF ACCEPTANCE ? HOW CAN U ACCEPT BEING IN CONSTANT PAIN ? 🙁 please tell me your secret.

  8. ann higgins salo at 2:43 pm

    I have lived with illnesses since early childhood – I’m now 70. Rheumatic Fever, Strep infections, Epstein-Barr, mononucleosis, FMS, CFIDS, osteoarthritis, and other conditions, disorders, and illnesses. My life has been challenged in so many ways including divorce after, loss of career goals, income loss, restrictive life-style as a result of being fully disabled and living on S.S.D.I. benefits. But in spite of all these events in my lifetime, I look at the positives – my three children, friends & some family, and my lifetime passion of being an artist – my personal therapy. Unfortunately, my daughter also has been diagnosed with FMS and has other medical problems – genetics another great challenge. I have two wonderful grandchildren – what a joy that is! Yes, I so agree with you Joy about grieving but then get on with your life the best way that you can. You learn to be strong, pro-active, assertive, and grateful for what you have. Accepting your limitations and knowing how to enrich your life even though you live with chronic illnesses, will ultimately lift some of that burden from you and allow you to create a new journey which will enhance your life along with the people you care about and those who care about you. Thanks Joy, for your personal insights which will help so many of us in such a positive way. I wish everyone who lives with chronic pain the encouragement for a better self-awareness and to live in the moment.

  9. Joy H Selak at 7:19 am

    Thank you, all of you for these thoughtful and helpful responses. Cyndi, I sympathize with this place you are in. I am not a professional, but I can say that there is a close relationship between grief and depression. And depression is a natural consequences of facing the loss and tragedy that you have faced. Perhaps talking to someone with experience in treating these issues could help you find more comfort.

    Jennifer, what a beautiful picture of our companions on the journey and how you have accepted their presence as your friends.

    I’m with you all on the gentle exercise. As a former athlete, it wasn’t easy for me to give up sport and settle on less strenuous activity. When I got back in the pool after years of not daring too risk the flare that exercise might cause, I started very slow and allowed myself to just enjoy being back in the water, seeing the light reflect of its surface and feeling it wash over my body. Then it was the regular breathing with each stroke. I learned to enjoy this as its own pleasure, and not have to count laps or keep time. I can swim more now, but this simple pleasure in the activity still pleases me.
    Now I walk, stretch and swim.

  10. karen at 6:54 am

    Thank you, thank you, thank you! The worst words I ever heard was when a Doctor said to me “There is nothing more we can do for you! But at least you are not terminal.” Really? Had I been terminal I would know my pain has an end. I grieve every time I go to a Doctor. I grieve every time I have to explain over and over why I can’t pick up my grandbaby and she says “Memaw, hold me!” I grieve when my family can not go to amusement parks or the Mall, because I can’t walk more than 10 minutes without fatigue and feeling like an athlete who has “Hit the wall”. This is not the life I planned, but it is the life I will do my best to live with. Every day has it’s challenges, but I have learned to stop and smell the Roses and to celebrate the small victories!

  11. cyndi at 9:51 pm

    I wish to thank you all for taking the time to let me know, no I’m not alone and let me know it does get better. Sometimes it is difficult to discuss this with my husband, as a fix it man he is frustrated and angry wishing to blame this on our terrible health care system for not doing something better. It took them years to agree with me after research I did on my own, taking them medical journals, published papers. Even so once they agreed, I was told, “we can’t fix you” because they don’t know how, nor do they know who to refer me too.

    Anymore the medical community tosses you pills, masks the symptoms, or rather just treat the symptom without finding out what is truly wrong with the patient. This I find the most frustrating. Live in pain for the rest of your life, take your pain pills and be happy. Yes, well what is happy? I don’t know anymore, I certainly can’t do the things I used too. Pretty much confined to my bed. I try and walk with aids, but it is so difficult and wears me out very fast.

    Today I swallowed my pride and realised, I need a scooter or electric wheel chair. At least then I could go out side on my own terms. When I want to, not when its most convienent for someone to take me.

    I feel that taking back my mobility will make me feel better both physically and mentally.

    Take care each of you. We are our best advocate, yet sometimes its difficult to get there. But we will get there.

    Blessings and love, Cyndi

  12. Jen Jacobson at 8:28 pm

    Thank you for this article Joy, for the courage to speak about grief, depression and rage. These are topics not easily discussed. Cyndi-thank you for being vulnerable and asking about the end of grief. I hope that my experience might be just a small help, or maybe a way to put grief into perspective overall?
    I have lived with several overlapping autoimmune diseases for many years. Like so many, they took years to diagnose, and even then the diagnoses were soft at best. I have been so ill that I cannot walk, cannot work, cannot take my children to the county fair, cannot open the jelly jar in the morning for their toast….
    I have been so ill that grief turned to hopelessness and despair. I have been unsure how I would manage and or survive this experience of being chronically ill.
    But here is the silver lining. When I thought “I can’t take it anymore” I soon realized that just drawing breath and being alive meant I absolutely was “taking it”. I was winning by just being. I began to look at this experience as a journey or road that I travel. A few steps are taken each day. I make progress along the way. Sometimes there are companions who join me. Their names are sadness, loss, frustration, anger, confusion. They walk with me for a time, and drop off when the journey sees fit. Then there are friends who nestle shoulder to shoulder with me. Their names are hope, grace, love, acceptance, laughter and truth. They shore me up for the inevitable twists and turns along my sometimes bumpy road. They too come and go – but always I keep moving forward, one small step at a time.
    Blessings to you all,
    Jen

  13. Wendy at 6:13 pm

    Thank you, Joy, for writing this. Although the particulars are different, the description could have been of my life with TN, divorce, fibromyalgia, arthritis, and perhaps an undiagnosed condition. As I grieved, I have found my family unable to do so, preferring instead to either strike the basic ostrich pose. The expectation is that I will magically get better and that something in me must be lacking, otherwise I would be well.
    Thank goodness I know better and have support from others.
    For Cyndi who wonders how long and all, the key for me was to feel the feelings no matter what they were and then also not to think too much about my new life and the future thereof. Better pain control might help and as already posted, gentle motion, gentle exercise does help as counter-intuitive as that might seem. Even for arthritis (bone on bone for me) walking helps, gentle walking.
    Again, thank you Joy for writing this. Very affirming.

  14. Shana Nagel at 11:03 am

    Cyndi…I so feel your pain. I know for myself the grief comes and goes. I was diagnosed with psoriatic arthritis & fibromyalgia 20 years ago. I have fought severe depression off and on since these diagnosis. Guilt, pain, frustration and even loneliness
    plague me often. Trying to be strong and “keep my chin up” is exhausting. Talking to others who truly understand helps me tremendously. Also…..I hesitate to say it because I hate to hear it. But you do need gentle excersize and sunshine. As painfull as it is you have to move and live……we are in this together ;-}

  15. cyndi at 5:28 am

    Thank you for writing this. It has helped, right now I am greiving the loss of my old life and right now things don’t look so good in my “new” life. So how long do you let yourself greive? When do you think its time to stop grieving and move on? I feel stuck right now and can’t seem to wake up out of grieving. I sleep far to much and the pain is horrific right now. I guess, how do you stop the grieving and move one?