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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Reaching Out to Others

I struggle to ask for help. Ash will tell you that he has to drag it out of me when he knows I am struggling. I will get frustrated in those moments and give into his offers for help. Here’s how bad I am: when I was pregnant with Jai, I refused to ask for help even when I needed it. I had something to prove, mainly to myself, that I wasn’t helpless. While being independent isn’t a bad thing, learning to be okay with reaching out to others is equally important.

It’s humbling when I admit I need help. It feels like a weakness when I do. I am not imagining it either, American culture does not encourage asking for help. With the reemergence of the “bootstrap” narrative, it can lead us to feel awkward when we want to ask for help. Individually, Americans are happy to help those around them. But looking on a broader scale, Americans tend to prop up those who find success with minimal help.

This can lead to the rest of us feeling judged anytime we need to get help.

It would be nice to do everything on our own, but with a chronic illness, that’s often impossible.

Chronic Illness & Asking for Help

Having a chronic illness means we will need to ask for help at some point. It may be from family, friends, or healthcare providers. When we ask for help, we are performing an act of self-care.

But getting to the point where we can ask for help is the trick. Often, we’re dealing with an invisible illness. When we reach out for help, and we know we don’t look/act sick, it can feel like we’re being unreasonable. For myself, I feel like I am taking advantage.

If I need help from anyone, I will bumble out justifications why I need the help. I often feel like others won’t understand, or I need to remind them that I have a chronic illness. At times, I feel like I manage my MS so well, that others forget I even have it. So when I need help, I am coming from a place of “they will think I am taking advantage of them,” or “they will think I don’t really need the help.”

I recognize that I am being unfair to others when I take this attitude. I am not trusting that they will understand or that they don’t remember. People remember I have MS when I tell them. It also comes from a space of not believing others when they say, “let me help you.”

Learning to be “Okay” with Help

It is okay to ask for help. For the most part, you know what you are capable of doing. So when there comes a time where you need to reach out to others, do it.

But if you ask for help, show appreciation for whatever help you receive. I have helped others, and sometimes I receive an insult in place of gratitude. You may find it’s a similar situation when you ask for help: you feel vulnerable, and when you do, you may be slow to express your gratitude. But you want to preserve your friendship and be able to ask those people for help again.

Be sure to express your appreciation. Be okay with asking for help. Work on releasing any feelings of vulnerability and look at getting help as a sign of your inner strength.

You Are Not Alone

Coping with a chronic illness is a lonely affair. Your symptoms, your struggles, your victories, they are all internal fights for the most part. These battles become hidden from the outside world. It makes dealing with a chronic illness one of the loneliest journeys you’ll make in your life.

But you are not alone.

There are support groups out there relating to your illness, online and in-person. If you are uncomfortable with the support group dynamic, you can always read blogs and lurk in forums. You can find connections out there and similar stories/struggles to your situation.

The more you reach into these safe spaces for your illness, the more comfortable you should become in recognizing that there is normalcy with your disease. When you normalize your experience, it should be easier to reach out to others to help you. You see that getting help is part of the disease and there’s no shame in doing that.

Help Others Help You

In September, I reflected on the need some people have to help you cope with your illness. You can always say “no” to their help, but sometimes they are insistent, and you do need them.

To be clear, you are under no obligation to allow people to help you if you don’t want it. But sometimes it is easier to give in to the insistence and let them help.

In these scenarios, have a pre-set list of things you are willing to receive help on. It may be driving you to appointments, meeting for social interactions over coffee/tea, or dropping a pre-made meal off. By having an “okay” list to draw from, you won’t compromise your values, and you won’t be left struggling to find something for your friend to do.

It’s hard to accept help from others, but we cannot pretend we are an island. Sometimes it’s essential to reach out to others and let them help us cope with our chronic illness.


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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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Coping with a Setback

It’s tough to cope with a setback. Setbacks stink, and they, well, set us back. How often have you started with a specific goal in mind only to find that something gets in the way of completing it? It might be a person dragging their feet on a project, a health obstacle, or poor timing, so it doesn’t work out.

Every Sunday, I set a small goal for myself for the week: complete my chores each day promptly so I might spend more time with Jai. I might start off strong, get ahead by two days on Monday only to have something happen Tuesday and Wednesday to get me rushing to finish my chores if they get finished at all. As the week marches on, I get farther and farther behind on my tasks until its Sunday again.

It never seems to fail that each time I get two steps ahead, something sets me four steps behind.

It’s frustrating when this happens. Every time I set a goal for myself, with or without expectation, something gets in the way. The trouble is, it isn’t every time that this happens. It only seems like it due to negative bias. But often it’s enough to leave me to feel discouraged that I am getting nowhere near achieving my personal goals.

The Source of Setbacks

When I recognize that I am slipping down a discouraging path with a setback, I try to reach a space where I can understand what is happening. Some delays are out of my control: the car needs an oil change, and thirty minutes last two hours because the car is due for a maintenance check. In this scenario, I have a choice to make: deal with the issue at hand, and get the car checked out, or skip-it and allow a possible issue fester into an expensive problem.

I choose the setback because I know not dealing with the critical task at hand, maintaining the health of my vehicle, can cause more stress in the future. Yet, time was lost that I planned to devote to something else, and that feels frustrating.

Another source of the setback may be of my own making, typically through self-sabotage. I am aware enough to know that I am the source of it, yet sometimes I continue to engage in the self-destructive setback. This may be dropping the ball on a project, not responding to essential communications, or participating in toxic behavior to avoid dealing with the situation.

When I get a setback that is out of my control, I get more frustrated. When I create my own impediments, I have only myself to blame. I can choose to change my behavior to have a favorable outcome. But when the setback is external, I get more discouraged because I don’t know how to fix it. It’s out of control, which makes me feel out of control.

But I am learning how to better deal with it.

Self-Compassion and Gratitude

When I feel out of control, especially amid a setback, I have to find a healthy way to control the situation. There is only one thing I can control, and that is my reaction to the setback. Through this, I can manage the next couple of steps I take. This is my response, how I deal with my response and deciding what my options are.

Depending on the scenario, a setback might feel like a permanent roadblock, but it does not have to be. I have options for finding a way around it. If I react like I’ve hit a dead-end, I won’t try to find an alternative. If I respond like I can turn around and try a different path, I am more apt to consider my options.

And sometimes a shut door is a shut door. There is wisdom in knowing that there are no other options over assuming there are no alternatives.

To healthily manage my reaction to a setback, I engage in self-compassion and gratitude for the situation. I tell myself, “it’s okay that this might not be your ideal situation, but you will do the best you can with it.” I follow it with gratitude that I am given a chance to learn more about what I can do. Adversity, via setback, is often the best tool to teach us about ourselves.

I don’t seek out setbacks, nor do I martyr myself in the middle of one. Rather, I take the “life gives you lemons,” approach: if I am stuck dealing with it, might as well make the most of it.

Despite what it sounds like, I don’t believe life purposely sets out lessons for us. The lessons are always there, it’s just a matter of, are we listening to them? Setbacks are one of those lessons we can’t avoid, so we should look to them not as keeping us back, but teaching us patience perseverance, and humility.

Each setback isn’t an addition to a lesson, it’s just a chance to deepen or refresh what you’ve previously learned.

Maintaining Focus

There isn’t one ideal way to handle a setback. But I have found one thing, besides self-compassion and gratitude, that helps me get through it: maintaining my focus.

A setback often derails us mentally and emotionally. We might want to complete a particular task this week, and an injury prevents that from happening. Rather than focusing on the injury beyond healing, focus on what can be done in the meantime.

Keep yourself focused while moving forward.

Sometimes it hard to keep that focus if it’s a long-term setback. If that’s the case, consider re-evaluating your goals, if only temporarily. Refocus on another goal that might help you achieve your sidelined goal. Look for alternatives, but keep yourself focused on moving forward rather than staying stuck in one place.

Respecting the Setback and Ourselves

The key to dealing with a setback is respecting the lessons and our ability to listen. Delays aren’t inherently a bad thing, though they do get a bad rap. They are frustrating simply because they put a pause on our expectations, and makes us feel stagnant. Yet, a setback can be a good thing.

I view setbacks as an opportunity to take a break. When I create the hindrance, often it’s because I am doing too much and not listening to my need to slow down. I unconsciously self-sabotage because it’s the only way I will listen to taking a breather.

When the setback is out of my control, it allows me to regroup, figure out what happened, and decide on my next step. Delays will enable us to take the time to reassess what is going on in our lives, especially if we usually don’t give ourselves permission to do so.

It is hard to cope with setbacks, but we can and will each time we experience one. And that’s okay.


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celebrate-life

Celebrate Life

Today I wanted to focus on celebrating the big things since we discussed celebrating the small stuff on Monday. So, why not go for the most significant thing worthy of our celebration, and that’s life itself? Why not celebrate life?

Living with a chronic illness makes celebrating life hard, but it can be done. We might wish things were different, hope that we were healthy. But let’s be honest: if we were healthy, there would be something else to make celebrating life difficult. It’s in our nature to skew towards the negative.

We all wish for what we don’t have, no matter how rich or healthy we might be. We are always desirous of something, and with that, we sometimes forget the most important thing out there: that we have our lives.

Using Mallory Smith as an example, let us celebrate each day despite the setbacks we encounter.

Appreciating Victories (Big and Small)

Each day we wake up is a small victory. If you wake up with no pain, a victory. If you wake up with no exacerbation, a victory. If everything is going well, then that’s a victory! That is a moment worthy of celebration.

Maybe you don’t take each (relatively) good moment for granted, but there might be moments where you forget. I often forget to appreciate the exacerbation-free days. I am reminded to recognize them when I am in the middle of a particularly frustrating exacerbation episode. At that point, it’s too late. I am in the past, appreciating what I had; or in the future when the event is over.

Neither of these options is ideal because I am struggling to maintain my mindfulness practice, which can help me manage my discomfort and stress.

It’s difficult to appreciate life with a chronic illness. The absolute uncertainty of when we’ll experience a flare-up is frustrating. Deep in the moments of an exacerbation brings us to the breaking point. Yet, we have to press on. The moments our illness minimally impacts us are worth appreciating.

Allow yourself to celebrate the mundane. Try not to feel weird about it because it’s something everyone, healthy or chronically ill, should do. Celebrate over social media if you need to, let others know what’s going on in your life but do not worry about getting validation. You probably won’t get it, or you’ll get a negative person trying to bring you down. Ignore them because it’s your celebration. Not theirs. If it’s important to you and you are the only one who matters.

Putting it into Perspective

A few months after my diagnosis, I was in the position of being “at least I’m not them,” for some stranger. It was not a good feeling to be the subject of someone else’s perspective-check. Yet, it’s a mindfulness exercise, recognizing that while your life might not be where you want it, there is always someone worse off than you.

To put it into context: I was in group therapy at the time, and it was my final session. As I was doing the “graduating out” exercises, the person taking my spot overlapped and was in their first session, seated beside me. I described my life with MS, how I was coming to terms with it, and I noticed this new person writing furiously in their journal.

I later learned that it was poor form for the facilitator to allow the journal into this safe space.

Curiosity overcame me, and since they were sitting next to me, I peeked over to see what was on the paper. I saw the words “…she has MS, at least that’s not me. I am lucky not to be her.” I was humiliated to see those words. No one else in the group had MS, so it was clearly about me. I could feel my anger towards this person rise and towards myself for being put into a position of pity.

Was that a breach of privacy to peek at what they wrote? Perhaps, but they didn’t exactly try to hide what they were writing. The journal was wide open and tilted towards me. Not knowing this person or their situation, it’s possible they wanted me to see what they wrote.

I recognize the importance this practice plays in our lives. It allows us to acknowledge that while our situation is not ideal, we could have it worse. Often it is said to us by others either as a means to comfort us or get us to be quiet about our situation.

So it’s a mixed bag as to whether this type of perspective check is healthy or not. I am not going to endorse it one way or the other beyond recognizing the importance of maintaining perspective.

For this person, perhaps I was able to provide small comfort in their life. It was incredibly humiliating and yet positively humbling. It would take a few more years before I had a better perspective, but I learned at that moment that I am not as perfect as I thought I was. It humanized me to myself. I know that sounds weird, but for years, I had an inflated sense of self as a coping mechanism. I was out of touch with reality, and this private journal entry broke through that.

It gave me perspective in a different way that it gave the writer perspective. I suspect, given what I remember of what little they shared about themselves, I probably gained more from the whole experience than them.

Mindful of the Moment

Practicing mindfulness is a chance for us to appreciate life.

When we celebrate the moment, at the moment, everything melts away. I am fortunate enough to spend a week or two on the shores of Lake Michigan every year. Looking out at the endless watery horizon, I can put everything aside and focus on that moment, staring off into the distance. It grants me an opportunity to put my life into perspective, but also recognize how fortunate I am.

We may not be able to spend a few moments in a place conducive to personal reflection, but we can spend time being mindful of our life. We can appreciate being able to breathe on our own; our ability to walk or if we can’t, the tools available to us so we can remain mobile; and we can appreciate the support network available to us, regardless of its size.

Take time to connect with the ground beneath your feet, the chair you sit in, or your bed. If you connect with the earth, reflect on all the other people who stood in that spot throughout time. Feel a connection to the faceless masses over several millennia. The animals, the plants, and all of life that experienced the same place you are in right now. Feeling that connection to others, allows you to feel a connection to life itself.

Celebrate that life.

It’s typically in these moments I feel small, but not in a negative way. I recognize my space and place in the universe. My existence is not even a blip in time or space. My problems, concerns, and worries will not matter in the end.

What is important is what I do with my blip in time.

Celebrate Life

Take some time to celebrate your life, as it is, no matter where you are in life. Put it into proper perspective, experience the benefits of mindfulness, and take time to decide how you want to spend your time. Do you want to engage in negativity beyond healthy expressions, or do you want to enjoy the time you do have, as imperfect as it may seem?

Choosing to celebrate life will help you feel better, lower stress, and find the personal satisfaction you might be searching for, despite your chronic illness.


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