Parental Grief – The Silence Is Deafening

Typically I write about topics related to chronic and painful conditions. However,  today I am writing about the pain of complicated grief, specifically of  parental grief after stillbirth. I chose today, because on this day, 13 years ago, my sister-in-law and brother-in-law’s son Dominic was born still.  My sister-in-law gave birth to an angel, their son, and then they had to say goodbye.

Mothers, like my sister-in-law, whose child is still born, give birth, they have contractions, push and labor until they birth their child, a child who will not take a breath. As parents they get to know their child, planned for life together and had hopes and dreams for their child’s life. They experienced months of joy, of preparation, little kicks and seeing their baby on ultrasounds.  However, after giving birth, they do not experience their child’s first breath, first cries, they  will not take their child home and fulfill the hopes, dreams and plans they had for their child and their family. Instead their baby will never take a breath and they will only be given a short time to say goodbye to their child who was born an angel.

On awareness days for infant and pregnancy loss, the main focus is on  remembering the child and acknowledging their existence, which of course is important.  Indirectly we are acknowledging the experience of the parents but does society really honor the magnitude of the parents life changing experience, and their painful journey? I think the answer is no, society does not focus sufficiently on the parental experience. I base my answer on the comments below that I have heard over the years, whether in my experience as a social worker, feedback from other grieving parents or in relation to my experiences after Dominic’s death. Society is not great at honoring grief .

“This used to happen all the time years ago, it wasn’t such a big deal.”

This statement lacks empathy, just because something is not a rare occurrence, does not mean it bears any less pain and significance. Furthermore, I’m sure it was a “big deal”, how would the death of a child not be important? Finally, by implying that it is not a “big deal”, the grief of the parents is being invalidated and a judgement placed on their feelings. Cancer happens all the time, does that negate the pain and significance to the person, and their loved one’s? Even if it happened to every person on the planet, would that cause the person to grieve their child less?

“Should’t they be over their grief by now?”

In my experience, what the person is saying is, “shouldn’t they be done being sad?” It is typically said because the loved one is uncomfortable with that feeling and want it to go away. Again this is a statement of judgement. The process of grief has no timeline and is not linear. There are many stages of grief, such as denial, bargaining, sadness and acceptance. It is perfectly acceptable for the parents to return to experiencing sadness. By rushing this stage or implying that they should not feel sad after a certain time period is not honoring the pain the parents have endured. What the loved one should be asking them is how can I comfort you and how can I help. If you are truly concerned that this stage of grief has proceeded to a depression where the,parents is at risk of self-harm, recognize that and seek professional guidance.

“At least the baby didn’t suffer”

The “at least” or “look on the bright side”, does not put the needs of the grieving parent at the forefront. Statements like these are usually delivered, because the person has a need to “fix” it, it makes them more comfortable.  Maybe the baby did not suffer, but the parents are suffering. This statement actually minimizes their pain, there is no “at least or bight side”, the parents have a deceased child.  No parent would want their child to suffer or feel pain, however, this is little comfort when someone is grieving a loved one. The parents grief would be no deeper had their child suffered, suffering only changes the child’s life story, not the depth of the parental grief.

“At least you have other children” Again forcing the bright side on the parents, isolates  the parents in their grief.  It places a judgement on the parent that somehow they should be less sad. Furthermore, one child’s life could never replace the life of another.

“You can get pregnant again” That may be true, but it is not comforting, the parents wanted that pregnancy and that child. They knew that child and loved that child. Furthermore, it may not be true that they can get pregnant again.

“It is probably better they died before you really knew them” This statement invalidates the love and relationship they had with their baby. Attachment bonds are developed even in the womb. The parents form a loving relationship and bond with there baby. They felt their baby move, watch them grow, looked forward to every ultrasound few. The mother especially, knew when they slept, when they tended to move more, what sounds elicited a response etc. She focused on caring for the baby’s needs and health above all else

“Everything happens for a reason” This is  a common statement offered in times of mourning. It usually is said to comfort the person saying it, to give them a sense of security, that there is order in the world. However, it is not an accurate statement. There is not a reason for everything, certainly we can attribute meaning and purpose to horrible events. However, discussing philosophy is not a comfort to a grieving parent. Furthermore, the parent may not be at a place in their process to be identifying meaning and purpose and it is no one else’s place to attribute meaning to their loss.

“This happened to me too”  The sharing of similar stories can be a powerful tool in helping us feel we are not alone. However, this must be done carefully. We are not with the parents on their journey to process our pain. No matter how similar the story, everyone’s story is still personal to them, even the two parents who have experienced the same loss, experience that pain differently. A statement of  empathy based on your experience is all that is really needed, unless your story is solicited.

“You should do this, it would help you, should you really be doing that” It is not helpful to judge how a person is dealing with their pain and loss. Unsolicited advice only serves to make the parents feel inadequate when they are doing the best they can.

Silence is deafening. Often the fastest way to isolate a grieving parent is not what is said, but what is not said. Parents deserve to have their grief and intensely painful experience acknowledged. If it is difficult and uncomfortable for you, imagine what it feels like to them. They want their baby to be remembered, their name to be spoken out loud. Less is more, just be present and “hold space” for them. “Holding space” means you walk along with them on their journey through grief, with empathy and without judgement. Some aspects of “holding space” includes unconditional positive regard, with respect and compassion. It is important to “sit with what is”, resisting the desire to change anything, especially their feelings. You are there to create a safe space for them. Allow the parents to feel whatever they are feeling. Do not usurp their pain. As you hold space for the parents, it may bring up your own pain, especially if you are family or if you have had a similar experience. Although you are in the trenches with them, you are holding their hand, not taking on their pain as your own. If you need to process your pain find someone to hold space for you. Do not try to fix it, that might make us feel better, but will only serve to make the parent feel isolated in their pain. The only way beyond the pain is to walk through it, walk through it with them.



Being The Leader In Your Care

It can me very challenging to self-advocate when we have lost our sense of self-worth, when we feel hopeless, that we do not matter. After feeling unheard, how do we learn to speak up again, to believe anyone will hear our plea. After feeling abandoned, how do we learn to trust?

First, it is important to identify these beliefs and the negative messages we have internalized and find ways to combat them. Taking note of these messages is the first step to confronting them and disproving them. You are a valuable person. You are worth the effort to advocate for.

Next, believe in yourself, believe in your inherent ability for self-determination. You have the power within yourself to motivate change and determine your needs and goals. Identify what those needs and goals are, and what objectives you need to accomplish them.

Know your rights. You have the right to equality under the law. You are entitled to respect as a human being. You have the right to well-being.  Identify what you need, what you are asking for. Be clear about these needs and how you would like to accomplish them.

Educate yourself, education truly is power. When you advocate for yourself, you need to know what you are talking about or asking for. Check with people who have expertise in what you are considering. Ask others who have issues similar to yours. Check references in the library. Contact agencies and organizations for information and support. Contact social workers and patient advocates within agencies. Be the expert in your own care, after all you are the most invested.

Using the information you have gathered, plan a strategy that you feel will work to get what you need and want for yourself. Think of several ways to address the problem. Ask supporters for suggestions. Get feedback on your ideas. Then choose to take action using the steps you feel have the most chance of being successful. Gather support, it is often helpful to have the encouragement of a loved one, caregiver, a professional patient advocate etc. My mother always shared the belief that when you are in the hospital it is important to have someone with you advocating for your needs. If you are alone, there are social workers and professional patient advocate.

Target you efforts, who is the person, persons, or organization you need to deal with to get action on this matter? Talk directly with the person who can best assist you. It may take a few phone calls to discover which organization or person can help, or who is in charge, but it is worth the effort. Keep trying until you find the right person. Maybe the right person is your spouse or another family member. Perhaps it is an insurance company, your doctor, a case manager, a vocational rehabilitation counselor, or a grovernment agency such as the Social Security Administration.

When you are asking for what you need and want for yourself, be concise. Stick to the point. Don’t allow yourself to be diverted or to ramble on with unimportant details. State your concern and how you want things changed. If the other person tries to tell you reasons why you cannot achieve what it is you want for yourself, repeat again what you want and expect until they either give it to you, help you get it, or refer you to someone else who may be able to help. It is helpful to role-play different scenarios with a supporter or a counselor. Don’t lose your temper and lash out at the other person, their character or the organization. Remember they are also entitled to respect.

Don’t give up! Keep following up on what you want. Always plan a follow-up on what was discussed. Continue to motivate  yourself to get what you what you need for yourself and your treatment plan. It can be difficult to self-motivate when you are sick or in pain, it is important to have external supports.

What happens if the answer is no, then what? For example, if you need a physician that is willing to partner in your care, to be proficient in your condition, to listen to your needs with respect and they refuse to act as a partner, it may be time to move on to a provider who will meet these needs. This may be frustrating, but it is important to understand that this is not a loss, it is simply diverting your path in a direction toward better care.

Finally, address why you may be struggling with the idea that you are worth having your needs met. Next, know the rights and needs you are entitled to and arm yourself with facts. It is always helpful to find support in these efforts. Finally, stay motivated and never give up!




Journey To Empowerment As A Person With Chronic Pain

Empowerment is a concept that is often discussed during Pain Awareness Month. One definition of empowerment is “the process of becoming stronger and more confident, especially in controlling one’s life and claiming one’s rights.” This sounds like a wonderful goal, but how do we accomplish this as individuals and as a community? I for one felt quite powerless over my chronic pain and illness, and it is was stripping away my sense of well-being and confidence.

What changed for me was realizing that although I am powerless over the fact that I do live with chronic pain, and more than one chronic illness and that they will impact my life in ways I can not control etc., I am not powerless over many, many aspects of my life. There are certainly things I can control. This was an empowering realization!

I still felt a lack of confidence due to the limitations of my chronic illness and the judgements of people who were less than understanding. I realized there were several obstacles to regaining confidence, which I continue to work on. First, I had to re-evaluate how I was personally defining my self-worth, where was I finding my confidence? I seemed to only be defining my value and purpose by what I could do, my accomplishments and achievements etc. I did not like that! I did not value other people based on these things, why myself? In others I valued their compassion, truthfulness, loyalty, integrity, humor, faith and strength. Why was my self-worth based upon achievement and accomplishment? Of course contributing to a society, a community, a family or relationship is important, but that is about giving of one’s self, not achievement and success, it is a humble act and hopefully not ego driven.

My second step was realizing that everyone can give something, I still have a lot to give too, in spite of chronic pain and illness! I was reminded of  this in 2013 through an organization called U.S. Pain Foundation. U.S. Pain Foundation gave me the opportunity to give to the pain community, during a particularly disabling time during my pain journey, in a way that I was able to, which helped my confidence tremendously. Prior to that, they supported my personal well-being with empathy.

I bet there are readers that don’t believe everyone could possibly have something to give. Well, my grandmother at 98 years old, even as her health and cognition were failing, had chronic pain herself at that point and mobility issues, was still finding ways to giving. She gave laughs (humor), love, and hugs, she still made charitable donations, she prayed daily for loved ones (faith), she imparted wisdom, she gave company and made visits, calls and cards, to nursing homes (compassion), to family and friends (loyalty) etc. She did the things she could do. Before chronic pain, my worth was defined heavily on educational success and my career goals as a licensed social worker, working 10 hour days, toward my clinical license, and a goal of starting a private practice. I likely will never have my own practice, but that does not define me.  At least for now I will never have a pain free day, but that does not take the power away from me to re-define where I find my self-worth and purpose.

My next step to empowerment was taking the power away from external forces to define my level of worth. This was also difficult, as I have done this my whole life. I looked to others to reflect my worth, instead of myself and my higher power, which for me is God. There were people in my life who judged me only on, popularity, monetary success, fashion, education and job success, how often I could go out, was I smiling enough etc. Then there were those who seemed to judge chronic pain and illness as some type of character defect. Sadly, after being so hurt, I even shut out those who never gave me a reason to mistrust them. Now I stay away from these types of people, who do not see to the depth of a person. I have also begun to water new relationships and tend to old ones, making sure I don’t allow any relationship, accept the one I have with God, to be the measure of my self-worth.

I don’t want anyone to feel as powerless as I did, I don’t want anyone else to base their worth on the vision of others. I want to help others find the one thing that makes them feel they still have power to define aspects of their life despite chronic pain and illness, to redefine their worth, to realize they don’t have control over having chronic pain, but chronic pain can not have control over them. It can not have control over their sense of humor, their compassion, their, integrity, their honesty, their kindness, their creativity, their faith and doing things you can do etc. unless they give it away. If we each take back what power we have, and do what we can together, we can put a stop to the vision of chronic pain being seen as some kind of personal failing or character defect. United we are strong. There are things you can do without even leaving your home or places in your neighborhood you may go regularly. You can write a letter to the editor telling about Pain Awareness Month and the impact of chronic pain. You can share resources and educational materials from organizations like U.S. Pain Foundation at your own doctors offices, church, library, community center, school, support group. You can track and support bills in your state and write letters to your representatives. Hang a chronic pain infographic on the community board. Make a donation to U.S. Pain Foundation, or send out donation requests. Get creative with your own gifts and talents that chronic pain has not taken, that can help you help others.


The Vulnerability of Visibility

Within the chronic illness community we speak a lot about the importance of visibility.  We discuss the need to self-advocate, to have our rights heard, and the importance of speaking out against stigma, especially when you have an illness that has debilitating symptoms that impact our interactions with the world, but aren’t always easy to see.

There are so many invisible and disabling illnesses, both mental and physical, from disease such as migraine, genetic conditions, to depression and anxiety. However, speaking out can be very challenging, in order for these challenges to be overcome, they need to be recognized, validated and the person supported.

More often than not people with invisible illness have experienced the emotional pain of judgement and stigma, there are emotional “scars” often as deep as the “scars” of the illness. People with invisible illness are often fearful of continued emotional abuses, which can be extremely painful. They have heard things like, “you are a hypochondriac.” , “It is all in your head.”, “you have no purpose.”, “How bad can it be?”, “Why can’t you just get over it”, “you are just emotional”, “You are lazy”, “You’re wasting your life.” “You are whining or attention seeking”. Those living with invisible illness are frequently abandoned by those they believed loved them unconditionally. We have had our illnesses invalidated and judged when we have attempted to be honest about its impact. We are judged for not fulfilling expected personal or societal roles or obligations due to illness, but when we speak to the cause and the impact of our illness, we are seen as weak. We are taught being silent is stoicism.

The words we have heard, the people that have abandoned us, all of this pain becomes belief, belief that we don’t matter, that our story has no purpose and is not worth telling. Further, telling it will only bring more pain. There is belief that if we speak it will only be heard as complaining. These beliefs lead to feelings of shame and fear. Persons with invisible illness may be afraid sharing and being more visible will make them more vulnerable to further emotional distress. They often no longer trust anyone to hear their story and treat it with care.

It is a juxtaposition, we are judged, perceived as whiners, lazy, seen as dramatizing the impact of our symptoms and ridiculed for perceived “flakiness”, just by having an “invisible” illness . If we then try to bring visibility to our story and the impact of the condition itself, we are still vulnerable to being called attention seeking, dramatizing and our experiences are doubted. Whether invisible or visible we are vulnerable.

The need then is to change these societal beliefs, expectations and judgements, but how do we move forward to speak up after experiencing past stigma? How do we protect against further stigma? How do we manage possible further emotional pain?

First, we must support one another, specially when emotionally vulnerable. We must validate the very real feelings associated with experiencing stigma.  We must not shame each other, for being at different places on the journey toward being visible and heard.  We must change our own internal beliefs and then help others who have internalized the painful, stigmatizing messages they have been given. We must work together to challenge these internal and external narratives.  We must celebrate small steps toward believing in their right to be heard, in their importance, and inherent worth and that their story has purpose. Finally, we must be the first caregivers of their story. We all have the power to motivate change both personally and on a societal level, it is believing it that can be the hardest challenge.


How Can Counseling Help Manage Chronic Pain When It Is “Not In Your Head”?

How can counseling help manage chronic pain when it is not in your head? To answer this question we first must understand pain. Acute pain is a normal physiologic response to tissue damage or potential damage. Acute pain serves a purpose to protect the body from damage. Acute pain goes away, usually within three months. Chronic pain continues after healing has occurred, lasting longer than 3 months. The cause of chronic pain may even be uncertain. In chronic pain, the pain no longer serves a purpose.

Secondly, we must understand how humans feel pain. The human body has nerves (nociceptors) that sense harm or the threat of harm. These nerves are the first step to feeling pain and sensing damage. The nociceptors carry signals to the spinal cord and to the spinothalmic nerves. The spinothalamic nerves carry messages all the way from the spinal cord to the brain (the thalmus). The thalmus is the area of the brain that receives these nerve signals and carry messages to other parts of the brain, such as the somatosensory cortex, the physical pain center. Nerves from the thalamus go to many parts of the brain (amygdala, frontal cortex, limbic system and hippocampus). These areas of the brain help us deal with pain and avoid further pain.

It is vital to understanding pain, to understand that the somatosensory nerves are the most important nerves to feeling pain. Activation of these nerves cause us to feel the physical sensation of pain. If the nociceptor is not activated but the somatosensory nerves are activated by another source, we will experience pain just as if we indeed had tissue damage! In many cases of chronic pain the nociceptors were not activated. Next if the nociceptor is stimulated but there is a disruption in communication before the messages reach the brain, we will NOT feel pain (such as with general anesthesia or a spinal cord injury).

Another critical understanding is that in chronic pain the SS nerves become easily activated by nerves coming from other parts of the brain. By controlling our thoughts and emotions we can decrease pain levels to the SS nerves and experience less pain! This is why behavioral therapy is often helpful in the management of pain.

In understanding chronic pain, we must also understand the causes of chronic pain. There are three main causes of chronic pain, each of these are based on which pain pathway is problematic. First in our discussion is nociceptive pain, pain that is coming from the continued stimulation of the nociceptive receptor. Chronic nociceptive pain is usually caused by chronic inflamation, it may be seen with chronic arthritic conditions. When it becomes debilitating there is almost always central sensitization involved (which we will discuss). Next, is neuropathic pain, this is pain stemming from problems with nerve transmission from the nociceptor to the thalamus. Chronic neuropathic pain is caused by damage between the tissue and the brain. This damage causes irritation to the nerve that causes it to fire excessively, resulting in pain. Chronic neuropathic pain can be severe, but is also associated with central sensitization. Finally, is central sensitization pain, which is the most common and problematic cause of pain. The somatosensory nerves in the brain become extra sensitive and fire when they should not. This causes REAL pain, even though the pain does not originate where the pain is felt. For example if the somatosensory nerves in the region of the brain that feels pain in the cervical spine become activated, real pain is felt in the cervical spine even though it does not originate there. CSP does not occur because the nerves are damaged, but because the nerves have changed. The somatosensory nerves and the nerves that activate them have been altered. The exact cause is not fully understood, it suspected that causes maybe prolonged exposure to pain, to opioids and other medications, and trauma.

Problems with CSP include increased activation of signals to the SS nerves and even light touch activates just a few nociceptors and magnifies and activates the SS nerves. Light touch then feels like pain. There is also inappropriate activation, the SS nerves may be activated without any input from the spinothalamic nerves, but from other areas of the brain that control emotions, thinking and decision making, memory and fear. When this occurs stress, anxiety, depression, worry and other events can cause pain exactly as if there were tissue damage! The pain is real! Finally, pain actually changes the brain! These changes are called neuroplastic changes.

Of all the types of chronic pain, CSP is by far the most significant. It is a factor in chronic back pain, chronic daily headache, fibromyalgia and even whiplash. It has been said to likely be a factor in all types of chronic pain. In CSP the patient is not imaging their pain! There is a common misunderstanding between patients and providers, when it is suggested a patient see a psychologist or counselor. It is not because the pain is “all in the patients head”. The pain is being stimulated or magnified by areas of the brain. The pain lies mainly in the brain! Therefore, that pain can be reduced and better managed by decreasing input from the parts of the brain responsible for emotions, thoughts and fear etc.

Can We Feel Acceptance On The Jouney With Chronic Pain?: Acceptance vs Resignation — In Pain Or Shine

An ongoing topic in the chronic pain community is the topic of acceptance. I would like to examine in this article a few themes, starting with what is acceptance? Secondly, what is the difference between acceptance and resignation? Finally, is it possible to come to a place of acceptance on our journey with pain. Acceptance […]

via Can We Feel Acceptance On The Jouney With Chronic Pain?: Acceptance vs Resignation — In Pain Or Shine

Can We Feel Acceptance On The Jouney With Chronic Pain?: Acceptance vs Resignation

An ongoing topic in the chronic pain community is the topic of acceptance. I would like to examine in this article a few themes, starting with what is acceptance? Secondly, what is the difference between acceptance and resignation? Finally, is it possible to come to a place of acceptance on our journey with pain.

Acceptance is often spoken about as a simple one step action “just accept it”, just “deal with it”, “just choose to accept”, “move on”, “get over it”. However, acceptance is an emotional state, acceptance is a feeling. Acceptance takes patience to reach and often occurs with the passage of time. The journey to acceptance is also far from linear, nor an easy passage, it is a process. There are many other feelings we pass through on the way to acceptance, feelings of anger, loss, sadness, grief, feelings we may revisit many times as we try to remain on the island of acceptance. Acceptance is not a passive state, it takes active processing and is empowering. It takes diligence and strength to maintain this feeling in spite of pain, to know when this emotional state  is a strength. What acceptance is not is resignation. Resignation is a passive activity, it is an end to itself, there is no journey or process involved. Resignation will prevent any movement toward the emotional state of acceptance. Resignation does not empower the person, but fosters hopelessness.

First, true pain acceptance, whether emotional or physical, is not about passively resigning yourself to being in a state of pain and the feelings that come with it. To resign oneself would be to give into it on every level, even aspects you still have control over. As chronic pain patients aspects of our journey we can manage, might be our feelings and reactions about what is currently out of our control, personal advocacy, aspects of our treatments plans etc. Acceptance is an emotional state toward the things in our life we can not change in that moment, such as having pain or an illness that currently has no treatment, a death, or even a flare that day.

We can not be passively resigned to continue returning to the emotional state of acceptance after feelings  of anger grief and loss. This takes courage and fortitude to continue to process, learn, advocate, plan and grow, despite living with chronic pain…it takes acceptance.