managing-grief-chronic-illness

Managing Grief with Chronic Illness

“I know that the ones who love us will miss us.”

Keanu Reeves, on what happens after death

Over the past two weeks, I’ve faced an emotion I haven’t dealt with in years. I’ve written about grief before, in the context of coping with a chronic illness diagnosis, but I haven’t reflected on physically losing someone. Relationships come and go, and we mourn losing our connection to a friend, but when death enters the picture, there is a finality to the whole situation we cannot come back. Living with a chronic illness means a strong emotional episode can trigger an exacerbation. That can set us back days, weeks, or even months.

So how do we manage an emotion like grief? 

It’s difficult, because there’s no right way for each person. There are healthy ways to manage grief and unhealthy ways. With a chronic illness, we must find the healthiest way to manage our grief to protect our wellbeing. What shape that takes depend on ourselves.

My Grief

For now, no one is dead in my life. But I have the opportunity to prepare for the death of a loved one. Death can surprise us, or we can have the grace of a timeline. My cat, Lytton, is undergoing some major health concerns. I’ve had Lytton for over ten years, and he’s a significant presence in my life. While he is eleven, I always assumed I would have more time with him.

With each emergency visit and specialist conversation, we are left with the feeling that the end is coming sooner than expected.

Knowing that one of my sources of emotional comfort and napping buddy may soon pass has thrown me headlong into the grieving cycle. I’ve had to reassess priorities and recognize the impact grief will have on my MS if I am not careful.

What follows are some thoughts I’ve had surrounding death and loss. 

Another Thing Chronic Illness Takes…

Chronic illness takes away our ability to grieve in the manner we wish. We can grieve however we want, without regard to our disease, absolutely. But if we have people who depend on us, or we don’t want to deal with a problematic exacerbation, we must keep one eye open to our health.

We must contain and manage our grief.

I am not suggesting “suck it up” or “get over it,” attitudes. No, grieve as long as needed in the necessary form. But be aware of what you are doing and how it might impact your health. Grief is stressful, and if we allow that stress to overwhelm us, we can make ourselves sick.

In the most profound moments of grief, we often do not care about our health. Nothing matters except the loss. Despite how it feels, the intensest moments of pain will pass, and our lives will return to the new normal without the individual. Should we stop taking care of ourselves during our period of grieving, and that helps intensify an exacerbation, the effects of the flare-up may be lifelong. 

To reframe what I mean through an example (this is for illustrative purposes, it hasn’t happened): I allow myself to get so worked up over Lytton’s death that I get an exacerbation. This leads me to lose function of my leg due to numbness, and I must be hospitalized for intervenous steroids. While I have Relapse-Remitting MS, it doesn’t guarantee my leg functionality goes back to 100%. Instead, I leave the hospital with a permanent 80% functionality of that leg. I can no longer achieve the specific goals I had for myself, and I must adapt my life to a new normal. 

I may grieve for Lytton’s death over several years, but I potentially have at least thirty more years to go beyond that. For the few months of intense emotional grief, by not taking preventative measures to balance my health and despair, I’ve impacted the rest of my life. Additionally, Jai loses his mother while I am in the hospital, and I’ve permanently reduced my ability to interact with him. 

I will probably feel guilty for not taking care of myself, needing to be hospitalized, and the impact of the exacerbation on my overall health. All three stemming from a situation where I could have prevented the flare-up through self-care.

Note: with autoimmune/chronic illness, we cannot prevent our flare-ups. They will happen when they happen. We can, however, take steps to minimize them from occurring. It’s remembering to take these steps while grieving to help prevent or lessen the impact of an exacerbation.

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Turning It Over

I struggle with letting go of control. Ash will tell you this should you ask him. When I get into a micro-managing state, it’s one of the quickest ways for me to experience an exacerbation. When I feel out of control, I tighten my grip to control everything around me, and then I stress out because I feel out of control. While I haven’t had a significant exacerbation in several years, my brain fog, L’Hermittes Sign, and neck twinges when I start down the path of stressing out. 

I’ve learned I have had to say to myself, “I can’t control everything, so I need to stop,” and attempt to go with the flow no matter what direction that might take. But I can slip back into bad habits of wanting to control everything and then I start stressing out again.

It’s a vicious cycle.

And usually feeling out of control helps bring that about. I’ve learned that I cannot control everything, and for the most part I do well to go with the flow of everything, but then I slip back into bad habits of wanting to control everything around me and then I get back into that space of feeling out of control and stressed.

It’s a vicious cycle.

When we have a particular life philosophy, we are often told to let go and give up control. And there’s something to that – it’s just got to be done in a healthy and reasonable manner. I have found what works for me, and so it’s important that you find what works for you.

I’ve learned I have had to say to myself, “I can’t control everything, so I need to stop,” and attempt to go with the flow no matter what direction that might take. But I can slip back into bad habits of wanting to control everything, and then I start stressing out again.

Depending on your life philosophy, or belief system, we are often told the importance of giving up control. That may be to a higher power, the universe, or just in general. That’s solid advice no matter your background: recognizing what you can control, what you can’t, and letting go of what you can’t.

When we have a particular life philosophy, we are often told to let go and give up control. And there’s something to that – it’s just got to be done in a healthy and reasonable manner. I have found what works for me, and so it’s important that you find what works for you.

Letting Go of Our Worries

If you have a higher power, you are at an advantage to someone who does not, because many belief systems teach the importance of giving up control to a higher power. If you don’t have a particular belief system, you have to remind yourself not to be so controlling and go with the flow. It’s a built-in reminder that those without a higher power do not have. But if you don’t have a higher power, that’s fine, you just have to remember to say, “it’s okay, I don’t need to control everything.”

Struggle with giving up control? Well, if you have a belief system, seek out direct texts that teach you to give up control. If you can’t find anything there that speaks to you, seek out secondary books, usually written by scholars, that might speak to the matter.

If you don’t have a belief system, consider mindfulness techniques to bring you back to the present moment. When you focus on the present, the moment you are in now, you cannot try to control everything around you. Center yourself at the moment and find ways to let go of the control you are fighting to hold. Look to your health as a starting point: I must let go of control to better tend to my health.

Finding the Balance

This brings up the question: who is responsible for our lives? Us? Our Higher Power? The Universe? Something else?

That’s an answer only you can decide. I cannot tell you, nor can I presume to suggest the correct answer. What I can do is tell you what worked for me, but that does not mean it will work for you.

For myself, I gave up personal responsibility when I had a specific higher power. I gave that higher power responsibility for my life, my happiness, and at times, my actions. I gave up too much control to this higher power. They were not responsible for my specific actions or responses to a situation, though I said they were as a means of absolving bad behaviors.

When I took responsibility for my actions and reactions to situations, I found a more profound peace within myself because I was able to feel more in control of my life. Even though things happened to me, outside of my control, I recognized that my response to those things was something I could control. It was about finding a balance between what I could control and what I could give up.

Figure out the balance in your own life: what responsibility can you take on for yourself, and what control you can let go. When you recognize that there are elements in life beyond your control, such as your chronic illness, you can start to lower your stress.

Acceptance of What We Cannot Change

Another advantage people with a higher power have over those who do not have one, is it allows for recognition for what cannot be changed and force us to move forward. Without a higher power, there needs to be a reminder to move forward in life, despite the roadblocks. People can place their trust in the higher power to see them through and take comfort in that.

Without a higher power, we must seek comfort elsewhere. We must trust that life will guide us through the process and that a coincidence will pop up to allow us to move forward or find an alternative. Often, life provides us with this when we aren’t expecting it. So remember to expect nothing, but accept everything to embrace an opportunity when it arises.

Moving Forward

It’s not easy to give up control, whether to a higher power or just in general. It’s never going to be easy, no matter how often we might need to do it. Why? Because control allows us to feel empowered. When we give up control, we lose a sense of power.

But if we want to move forward in life, if we’re going to begin to heal the emotional wounds caused by a chronic illness, we must give up control over things we cannot control. Whether that is to your higher power or to something else, when you give up control, you begin the process to move forward in life.

Life moves us in a forward momentum whether we like it or not, we might as well accept that movement and find ways to work with it, rather than against it.


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The Power of Others

When dealing with a chronic illness, it is sometimes our deepest desire to enlist the help of others. We might be too afraid to ask on the surface, but unconsciously we desire connection to others, especially when we feel alone. Often people want to help us, but can’t or don’t know how best to do so. Sometimes the best thing they can do is pray or send positive thoughts our way.

Is the concept of “thoughts and prayers” actually helpful? Or is it something we say to each other, and accept on our behalf as low-effort?

I think it boils down to your perspective. If you are a glass-half-full person, then having someone pray or reflect on you is helpful. If you are a glass-half-empty person, then it might be a hollow offer.

How can others help you through your health crisis? If you are new to my blog, please review this month’s disclaimer before reading any further.

The Power of Prayer (or Positive Thoughts)

As a teenager, I remember sitting and listening to my religious leader “cite” a study on the effect of prayer for those in crisis. I use quotes not to disparage, but because the leader was extremely vague about the study, the details, and did not provide resources to find the study on our own.

Reflecting back, I believe they were referring to Dr. Randolph C. Byrd’s 1988 study, “Positive therapeutic effects of intercessory prayer in a coronary care unit population.” The study found that participants who received intercessory prayer fared better in their follow-up appointments than those in the control group, who received no prayer at all.

Unfortunately, subsequent studies found that Dr. Byrd’s 1988 study to be at best flawed, and at worse irresponsible. Relying on prayer, regardless of the religion, to heal a patient can prevent the patient from receiving the necessary medical intervention needed to help with the illness. Each study that comes out relating to prayer and health finds little correlation between prayer and improvement of health.

Here comes the “but…”

While prayer itself may not change the outcome of a medical diagnosis, there is something behind knowing that others are thinking about you. It may not improve your health, but do you feel comfort when you know others tell you they are thinking/praying about you?

Unfortunately, I ran into a bunch of dead-ends in my research for this post surrounding the benefits of having others think about you. Current trends are to not worrying about what others think, and focusing solely on self-care. Both of these are positive in its own right, but it doesn’t answer the question: what are the benefits knowing others are thinking about us?

What I am about to say is speculative and unscientific: I believe knowing others think about you, whether it’s via prayers or positive thoughts, provides comfort. It allows those of us with a chronic illness to know we aren’t alone. Others may not know our experience, we may be alone (mentally) in our disease, but when others care for us to spend a few moments out of their day to reflect on our journey, it means a lot.

Going Beyond “Thoughts and Prayers”

If you are reading this as a friend or family member of someone with a chronic illness, there are some things you can do to stretch out your “thoughts and prayers” for them.

Use the time you reflect on them and find ways you can help. Sometimes, when we say we’re thinking about someone, it’s the most we can do. That’s fine, but consider doing something in their honor.

What You Can Do to Help

  1. If the person is dealing with a massive health crisis, consider getting yourself screened. For example, if they have cancer, try to get tested for that particular form of cancer. Or, get yourself screened as a potential donor for them or in general.
  2. Learn all you can about their health crisis and be better prepared for how to engage with the patient. In your research, find out what other patients say about the “dos and don’ts” in conversations.
  3. Donate money in the person’s honor towards research for their illness.
  4. Share across social media the latest information and research on the illness, but make sure to get their consent before tagging them.
  5. If you can physically help the person, take them to appointments or for a social outing of their choosing.

There are many other ways you can help someone with a chronic illness to extend the efficacy of thinking about them. You just have to find what works best for you and them.

Powerlessness and Control

Often, those in our lives feel powerless when we get a chronic illness diagnosis. They stand beside us, hold our hand, and do everything to help us manage our illness and still feel like they can do more.

Prayer or reflecting on us is an additional way to feel like they are helping. It’s calling on a higher power or the universe to intercede on our behalf. While the answer may never come, or be positive, it’s yet another way for our friends and family to feel in control in an out of control situation.

Sometimes saying “I will pray/keep you in my thoughts,” is enough to empower the person to go beyond the statement and spring into action.

When faced with powerlessness, the smallest action can help someone regain a sense of control. Next time someone says, “I am thinking about you,” think not of it as a common thing we say when there’s nothing to say, but rather a way of providing comfort at the moment.


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Belief, Positivity, and Chronic Illness

“Embrace the power of positive thinking!” We hear that all the time when we endure a health crisis, a rut, or embark on a wellness journey. We are told if we want to change our mindset or become healthier, we need to shift our thinking to be positive. It’s something I frequently promote on the blog. But that isn’t possible with a chronic illness. Sometimes we need a little extra help.

Can positive thinking help you manage your illness? What if you are feeling particularly low on positivity?

This is where a higher power or greater cause can step in to help. Belief comes from the same place in our brains, whether it’s religious or not. Having strong beliefs, no matter the source, helps us create a sense of community and support when we find others who are similar. Prayer or meditative practices can help quell darker emotions that arise in illness.

Depending on your perspective and your practices, it’s effortless to slip in positive thinking. You just have to use what you already know to work with you, rather than against you.

Positivity, Meditation, and Prayer

Nature works against us when we want to sit down and focus on the positive. Geared towards survival, we get caught in the negativity to help keep us safe. Yet, negative thinking causes so much mental and physical harm. We no longer need it to survive, yet it still follows us around.

Belief can help us ward off negative thoughts. If you have a higher power, you can engage in your practices to find comfort in the routine and tradition. If you don’t have a higher power, you can participate in relaxation/self-care exercises to help set your mind at ease.

Regardless of your background, when you want to start engaging in positive thinking, there are tools available to you. If you are religious, look into your texts, and any devotionals explicitly created for comfort. If you aren’t religious, there are a lot of secular and science-based books available to get you started.

Seek out someone more knowledgeable too: a leader in your community, life coach, or counselor. They can give you text, tools, and mantras equivalent to meditation or prayer.

Prayer, or self-reflection, help bring comfort to the practitioners. It can take the edge off of emotions, help you collect your thoughts, and self-soothe. Most importantly, it can give us a break we need to refocus our thoughts to be objective. While coping with a chronic illness, we sometimes sink into darkness and crisis. Prayer/meditation grants our brains the break we need to help see beyond the darkness.

If you have a higher power, you might hear them speak to you with words of comfort. If you don’t, you might gain a similar moment of peace while meditating. These practices serve as a wonderful means to distract us from our despair.

Is it Helpful?

Finding a sense of direction within your personal philosophy should always be helpful. Your belief system (of any kind) needs to bring you comfort, not additional stress. If you find that you aren’t getting the support you need, figure out what’s going on. You may need to re-examine your beliefs to see why it’s not fulfilling your needs.

When you are in a time of personal crisis, such as a diagnosis or exacerbation, you want something to draw your strength upon.

I found as I grew older that the philosophy I used as a child no longer worked or brought me comfort. It only brought anger and resentment. I needed to look elsewhere to draw support as I dealt with my MS and settled on one that I dabbled in since I was a teenager. It took me a long time to feel okay with this switch, but it was more important to care for my mental health than anything else.

If your philosophy works for you and brings you comfort, continue to find ways to keep it working for you. If not, then speak with someone objective: they might be able to healthfully redirect you to materials to help you reaffirm your beliefs. Examination and reflection is essential no matter your faith, or non-belief.

Keep trudging forward as you deal with your illness and continue to draw sources of strength close to you as a means of help.


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Positive Thinking Leads to Positive Actions

Since the 1952 publication of Norman Vincent Peale’s book The Power of Positive Thinking, there’s been a market for promoting positive thinking in the self-help circuit. It does make sense, and science backs it up: when we focus on engaging with our positive thoughts, we are less stressed and improve our health. The more we engage with positive thinking, the more it leads to positive actions in our lives.

We are marketed positive thinking as a way to increase our overall happiness in life. The issue is that happiness gets conflated with satisfaction. What we are truly seeking is total satisfaction with our lives, whereas happiness becomes a byproduct from that satisfaction. We can achieve joy, and therefore, happiness when we begin to shift our mindset from mostly negative to mostly positive.

To begin this process, we must self-reflect and be open to rewiring our brain to be receptive to positive experiences and thoughts.

Positive Thinking = Healthy Mindset

So positive thinking, what is that anyway?

The theory is this: if we start to incorporate more positive thoughts in our daily lives, we engage in a healthier mindset. Once we have a healthier mindset, we engage in more positive behaviors.

Anecdotally: when I started viewing myself with a positive perspective, I found I was open to doing positive things for myself. I have a hard time accepting myself as a decent person, but once I stopped thinking of myself as a bad person, I was more willing to eat healthier. I started to make healthier decisions regarding exercise. I decreased my desire for self-destructive behaviors. The idea of making healthy decisions became palatable because I finally felt like I was worthy of the effort.

It all stemmed from the moment I chose to engage with positive thinking.

Healthy Mindset Leads to Healthy Actions

The science is there: when a person develops a positive mindset, they are more inclined to engage in healthy behavior. You are more prone to go to the doctor to treat an exacerbation of an ailment you might have ignored. You re-prioritize your thoughts, choosing not to get distracted by things out of your control. You may even decide to reconfigure who you spend your time with, opting to be with people who leave you feeling good about yourself, rather than those who are toxic.

To be clear, this isn’t saying we take on a Pollyanna perspective and only view the good out there. We still acknowledge the negative and yet get caught in the negative thought cycle, but we spend less time in the negativity.

For those of us who spent a lot of time in the negativity, incorporating more positive thoughts is not a 180-degree turn, but a chance to be more centered in our thoughts. Be realistic, but also choose to be more positive in our realism.

Engaging with Positivity More

Find ways to think of yourself in a positive light. Celebrate your life as much as possible. Did you let someone in front of you in line today? How did that make you feel when you brightened their day, even for a moment? Engage in those good feelings you get when you do something positive.

Often we look to others to be our cheerleaders, our parents, friends, coworkers, and sometimes strangers. But the biggest cheerleader in our lives has to be ourselves. External validation is nice to have, but its the internal validation that’s more important. If you let that person in front of you in line and they didn’t acknowledge it, that’s okay. You didn’t do it for their validation or gratitude. You did it for yourself. If you feel good about doing it, who cares how others react?

Praise yourself for the moments you did something that makes you feel good. Don’t look around for others to do it. Engage with your positive thinking and positive actions as often as possible.

It will be gradual, but you’ll find that after some time, your actions will begin to reflect your positive thinking. Your feeling of self-satisfaction and its byproduct of happiness will increase as well.


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