taking-my-chronic-illness-out-on-others

Externalizing My Illness

Since my diagnosis, I’ve had days where I took my chronic illness out on others. Especially those closest to me. Ash has (and still does on my bad days) weathered my emotional storms. There are days where I cannot effectively handle my emotions, and he’s stayed strong for me.

I’ve gotten better, but at the beginning of my health journey, I would purposefully nettle or act in a manner to stir up trouble in my relationship with Ash. I recognize now that they were moments where I projected my emotions onto him: I was upset with life and I wanted to externalize those feelings by taking them out on someone else.

Misery Loves Company

It’s true. Those who are miserable love company.

We’ve encountered it at one point or another: people bringing us down because they feel miserable. Strangers driving badly because they are angry; customers yelling for the manager because of a perceived slight; or a friend undercutting our happy moments by inserting a negative non sequitur.

Personally, I dealt with colleagues who blamed me for their personal problems and close ones not invested in my personal success because of their lack of success.

When others project their misery onto us and we engage with it, we become miserable ourselves.

The Misery of Chronic Illness

A chronic illness is misery enough: fatigue, mental & emotional frustrations, and other painful physical exacerbations to name a few. Often times making it through the day is about maintaining our emotional fortitude. Some days we make it at the end of the day not feeling entirely awful and other days we give into our emotional misery.

When we have a day where our illness overwhelms us, it’s easy to feel miserable. There is a time and place for grieving, but when we externalize that grief beyond ourselves and at others that it becomes problematic. Venting to others is reasonable, we cannot keep everything in, but if we snap at a friend of family member; say something we know is particularly hurtful for the sake of hurting them; or try to manipulate the situation to make someone miserable, we go too far.

I think if we need a moment to vent, especially relating to our illness, we should find someone who understands and preface our venting with “I am not directing any of this at you. I am having a bad day with my illness, so I need someone to vent to…may I?” Not only do we provide them with a warning, but we also give them with the ability to say “no” as well. It is important to respect their decision should they say “no.” They may be having a bad day as well and they cannot provide adequate support without harming their own health.

When we take our negative emotions and energy out on others, we bring them down and we run the risk of alienating those we care about. A day may come where they recognize that they need to remove us from their life to stay healthy.

Acknowledging the Double Standard

When I recognized my bad behavior, I saw that I set up a double standard. It was okay for me to behave badly, but not okay for others to behave badly around/toward me.

I got so caught up in my MS that I didn’t take the time to recognize my expectations for others and how high they were. While it is important to have expectations for those who surround us, after all those expectations can protect us from toxic relationships, the expectations should be reasonable.

I put pressure on others, they were not aware of this pressure, where if they did not listen to me or acknowledge my pain in a particular moment, then they were a poor friend. These were relationships where it was weighted towards me, where I took a lot out of the relationship. So in the moment where they demonstrated some resistance to my one-sided behavior, I dismissed them as a poor friend.

Yikes.

Adding in a chronic illness, it’s easy to develop a built-in excuse for our poor treatment of others. We can have an (understandable) chip on our shoulder because our bodies betrayed us. We feel we’re owed something, so we take what we are owed by externalizing our feelings onto others. Should others treat us in a similar manner…

Once I recognized the double standard I set up for myself and those around me, I was able to take steps to stop engaging in that double standard. I have yet to reach out to those I’ve hurt, I am not at that point yet, but I know I can stop behaving in a manner that is toxic and harmful to others.

I can also take the steps to be more mindful of other people’s journey and respect that they might be going through something equally troublesome that causes them to behave a particular way. It’s never used as a means to excuse bad treatment, but as a means to be compassionate to their situation.

Resisting the Urge

I built up a pattern of bad behavior of taking my chronic illness out on others over years. It’s going to take a long time to unlearn the bad patterns and relearn healthy ones. I still have urges to take my emotional pain out on Ash, but I am quicker to apologize if I do, or I try to preface by saying I need a moment to vent.

I’ve been slowly pulling myself away from toxic sources that might cause me to backslide into negativity and making my peace with my MS. Recognizing that I was externalizing my pain was also a major step in the positive direction. Knowing what I am doing helps eliminate the desire to keep doing it.

Having a chronic illness is no fun, but it’s no one else’s fault that I have one. Not mine, not friends, not strangers, nobody. Taking my emotional pain out on them accomplishes absolutely nothing because I tend to feel worse afterwards.

I have learned to resist the urge as much as possible, but be gentle when I have a moment when I do give into it. Apologize when necessary and understand when others are in a similar space. It’s a way to lower my stress and manage my MS in a healthy way.


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Changing Physical Appearance with a Chronic Illness

I’ve avoided addressing the elephant in the room since I started the year making personal wellness changes. It’s a sticky subject and somewhat challenging to address when it comes to a chronic illness. Chronic illness and/or disability make any meaningful physical changes difficult (if not impossible). If you are unable to move for more than a few minutes a day, then dedicating that time to exercise is furthest from your mind. Priorities change and addressing your physical appearance can drift towards the bottom of the list.

And that’s okay. Let’s move our intention away from changing our appearance, i.e., losing weight, and refocus on being healthy. Exercising does not need to be about losing weight, but about moving to help your body heal and thrive. Weight loss can become an added bonus, but not a goal.

I started the MS Mommy Blog to be a space where I detail my wellness journey into healthy living and eating. My journey was never about changing my physical appearance, it was strictly about setting a good example to Jai and taking advantage of a positive MRI result. I accepted the following three things: I would never dip below an overweight BMI, never have a body I would be proud of, and never find a source of natural energy.

Because of MS fatigue, I had little desire to go out in the blazing Southern sun and humidity to exercise. Eating was a pleasure I gave myself, especially when I was despondent post-diagnosis. I say all of this because I understand how hard it is to take the initial steps towards making physical changes, but it is possible to start the process no matter your ability levels.

What I am about to discuss is based solely on my personal experience and I am not an expert. Because this is based on anecdotal evidence, your own results will not match mine (and that’s okay). Everyone’s path looks different and that’s okay. Speak with your healthcare professional about your ability levels and any recommendations they might have for you.

Stuck in the Body

When coping with a chronic illness, we are stuck in our bodies.

If you are reading this with a chronic illness, you know this, but I say that for the benefit of those without a chronic illness. It’s easy for outsiders to forget that we are stuck with the body we are in, particularly if our illness is invisible. It’s in those moments we get the harmful comments of: “just get up and exercise,” “it’s in your head,” or “you don’t look sick.”

Getting those comments, and living in a culture where we often ignore invisible illness, makes any desire for change discouraging. We are stuck within numb, shaking, fatigue-ridden, weak bodies that don’t listen no matter how many times we yell at it.

Being stuck in a body is discouraging, especially when you see others chase after their physical goals. Or when you see people squandering their abilities. It’s even more frustrating when you start comparing yourself to others with your particular illness and see how they are able to be active ways you aren’t.

That’s where the first change needs to occur: stop comparing yourself to others. Those with a chronic illness and those without. And you have to stop listening to what people and culture tell you (this includes this blog).

The changes you decide to make must be in your time and in ways that work for you. Do not use this an excuse to not make the changes, you do want to take time to get healthier, but do it without any expectations beyond finding a way to feel better that complements your disease management course.

Determine what you can change & what you can’t

There is so much wisdom in knowing what you can change and what you cannot. There are aspects to our bodies we cannot change unless we had unlimited income, and even that’s limited.

The key is to figure out what is changeable and what you have to accept will be a part of you unless certain circumstances change. Once you know what you can change, then you have to decide how much you want to focus on it and how much of it you’ll put into the “secondary” goal category.

Everyone can lose weight, but do you want that to be a primary goal or something that happens as a side effect to being able to move more?

For some, the idea of losing weight is emotionally painful, so that should not be the first physical goal you make. Instead, if your healthcare professional recommends moving more as a means to help manage your illness, then consider adding a fifteen-minute walk in each day and build up to thirty.

Or if you are advised to cut a particular food from your diet for health reasons, rather than seeing it as a loss, view it as a challenge to figure out how to make alternatives to your favorite foods.

When you make the changes you can and frame them in more manageable ways, you should notice secondary benefits. When I cut sugar from my diet, I was shocked at how much weight I unintentionally lost.

Choosing Health

Focusing on physical appearance and any changes you want to make is discouraging. If you had a weight loss goal for this year, are you still sticking to it? Or have you given up on it entirely?

Revisit your goal if you’ve dropped it and refocus it to be about your health. Don’t think about the pounds you want to lose, but how you want to feel by the end of 2019. Not all of the suggestions below are about weight loss, but about finding ways to adapt to your chronic illness:

  • If your illness prevents you from walking more than five minutes at a time if you can safely do it, why not see if you can add on a minute or two?
  • If your weight prevents you from doing basic chores, why not focus on one chore to do and do it well?
  • If you are mostly bed bound and you want to get more exercise, consider small hand weights or a resistance band for twenty minutes a day.
  • If you want to eat healthier, why not consider dropping one sugary or unhealthy snack in your day? If you find you’re hungry, consider adding in water or some other healthy alternative.

All of these changes are small, and if you are getting started, that’s all they need to be. For myself, I found that small changes snowball into bigger ones because I was encouraged by my results to keep moving forward.

Learning to Love your Body

Before you reach your personal health goals, the first thing you need to work on doing is loving your body as it is, warts and all. This includes accepting the chronic illness that inhabits your body. You don’t have to like that it’s there, but just accept that it’s a part of you and you need to adapt around it.

When you take the time to accept your body as it currently is, in this very moment, it takes the pressure off of yourself. When you don’t meet your goals for the day, you can say to yourself “that’s okay, there’s always tomorrow and these things take time.”

Don’t take this as an opportunity to slack off, you still want to work towards making healthy changes, but you don’t need to put as much pressure on yourself that you might feel you need.

Additionally, when you learn to love your body in its current state, you no longer seek validation from outside sources. We look to media and others as opportunities to compare and rarely do we measure up. If we have friends and family influencing our decisions because of a snarky response, we may get sidetracked.

Rather, say to yourself: I am doing this for me, I am doing this to be healthy, and I am doing this because I want to make a change. Then mentally give the middle finger to those who want to keep you down.


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Featured photo credit: Jennifer Burk on Unsplash


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Frustrating Personality; Strong Emotions

I’ve often thought to myself, “Man, I have a frustrating personality.” My combative nature negatively impacted my personal relationships. For a long time, I wanted to change my personality, but I believed when I was told that personality is fixed. If I was a pushy person, then I would always be assertive and no deviating from that behavior.

I am discussing personality because it’s one of those things that I highlighted as a dislike in moments of self-reflection. I can imagine some introverts wish they were more outgoing while some extroverts wish they were more introverted.

Since becoming more self-reflective, I found my personality shifted without realizing it. It’s not a significant shift, but I am noticing that life is a little easier than it once was, despite the chronic illness. I would fight certain aspects of my personality, but now I accept them. I’ve found this openness levels me less stressed and more personally satisfied.

Personality: Inflexiable?

So is the personality inflexible? The answer is yes and no.

Often major life experiences can shift our personality one way or another, but there are core things about ourselves we cannot easily change. An introvert cannot become an extrovert overnight. They might be able to have more extroverted moments, but they may never reach the same levels of extroversion as someone else.

There are five traits to our personalities. These are the dimensions that help define and shape who we are:

  • Openness
  • Conscientiousness
  • Extraversion
  • Agreeableness
  • Neuroticism

Each of these aspects is flexible in of themselves, but the degree of flexibility will vary from person-to-person. As I go through each trait, you may notice that you were once curious about a new venture that you are now extremely cautious. This is where the personality shift comes in and why they can be more flexible than you expect.

As I go through each type, I place no value judgment on the examples I provide.

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Redefining the Internal Narrative

When I recognized that I was addicted to my anger, I realized it was sustained by my internal narrative. I used a lot of nasty words to describe myself during my mental arguments. As Gary John Bishop said in his book Unf*ck Yourself, we are constantly having internal conversations whether we realize it or not. There was no escape from this negative internal narrative. When I recognized the hatred being spewed at myself non-stop, I knew I needed to focus on changing my internal narrative.

We are dealing with a chronic illness, so we are busy fighting/managing our bodies. For some of us, we are also fighting our minds which makes our journey to wellness that much harder. When our bodies betray us via exacerbations or normal symptoms, it’s easy for our negative internal narrative to rise up and leave us wanting to give up. I wanted to share my experience with my negative internal narrative and how it led to moments of self-defeat. At the end of this post, you’ll find more detailed suggestions for dealing with your own narrative.

Content warning: there will be talk about self-hatred and self-destructive behaviors. In the section “Using the word ‘Hate'” you will find adult language as part of negative self-talk. If you find this discussion triggering, please do not read any further. If you or someone you know engages in self-harm, please know that you can get help

When the Internal Narrative is Negative

From childhood, I had a negative internal narrative. I was taught from the very beginning that I was fundamentally flawed as a person. Every time I did something “wrong,” it had to do with me being irredeemably bad. Thoughts were not separate from actions, so if I had a negative thought it was the same as though I acted out on it.

As a child, I learned to mentally flog myself. While I was taught that I had the means to get out of my “badness,” I still had to follow a strict code of behaviors, thoughts, and actions. Deviation from that code meant I regressed into “badness,” and I was to prevent that at all cost. Mentally berating myself helped me manage any external conversations about my behavior because I pre-empted the impetus of the discussion. I took the power out of the other side by mentally hating myself and regained a sense of control.

What I was doing in those moments was setting myself up for a lifetime of self-hatred that I am just now starting to unlearn and heal from.

An example: as a child on the playground, someone would say something mean to me. If I had a thought of “well, I hope you fall over and hurt yourself” as a means of coping with my hurt feelings, this was considered a moment of being naughty. I wished harm on someone, and this was wrong by the code taught to me.

Because I wasn’t allowed to have a “bad” thought, I had no way to manage my hurt feelings. Desiring for a bully to get hurt, provided I didn’t actually retaliate, wasn’t a bad thing. It was a healthy way to acknowledge they hurt me and I wanted them to feel the hurt back. It may have naturally led to understanding why the bully was mean: they were already hurting and taking their pain out on me.

Instead, when they said something mean and I thought about them getting hurt; I realized that my desire to see them get hurt was “wrong;” and therefore, the bully was right about me: I was whatever horrible thing they said I was. So it wasn’t just the bully picking on me, I was picking on myself. If I told anyone about the bully and my thoughts immediately after the incident, it was reinforced that these thoughts were wrong.

The internal voice I developed over my childhood was angry and reflected the judgments I heard by adults. Often the judgments weren’t directed at me, but at others in similar situations as myself. I would compare myself to the people in these judgment scenarios and recognize a lot of similarities in myself: “that person claims to be following a specific code of conduct, but look what they are doing. It’s so hypocritical.”

Oh, I would think to myself. I always wanted to do that thing they are doing. I guess that makes me bad because I feel/act that way in private. In those moments, my shame increased and my internal voice would get louder about how bad I was as a person.

This angry, negative internal narrative turned me into a bitter, anxious, and stressed-out person. I burnt out fast. This lead to a deep depression in my early twenties where I struggled to get anything done in my life. Every missed opportunity was not a learning experience but a personal failure. Every failure was fuel to my “I feel worthless” fire. Rather than persevering in the face of self-doubt and failure, I gave in and wallowed in the thoughts of how I was a bad person.

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I Want to Make Personal Changes

We all reach a moment where we say “I want to make personal changes.”

That moment comes when we are unhappy with our lives, or our relationships, or how we manage our chronic illness. When we say “enough,” we self-reflect. But when we self-reflect, we realize that there’s a lot of changes that need to happen to become our ideal self. And that’s where the desire for personal change can stop.

We should acknowledge that we don’t like making these changes, but that they still need to happen.

I Don’t Like This

Humans are complicated creatures, so there isn’t one source for what frustrates us. While I can point to specific influences in my life as the reason why I think a particular way, there is a lot more going on in the background. Many times, I am unaware of these background influences. I just know that I think I am inadequate.

Rationally, I know these thoughts are false. But these thoughts and actions have a hold of me and make it difficult to see past my flaws.

I am lucky that I can point to some situations in my past as the source of what I need to change. That isn’t always the case. There are reactions I have, and I don’t know where they come from. In these situations, it makes it more difficult to want to make the necessary changes.

Knowing the source of my anger makes it easier to acknowledge it and be mindful of it. I may not always successfully deal with it, or even attempt to deal with it, but I am more likely to try and do something when I am able to say “oh, that reaction stems from when the kids in the neighborhood wouldn’t play with me.”

In cases where I don’t know the source of my behaviors, I am more likely to be resistant to making positive changes. It’s stepping into an unknown, and I don’t like that. I don’t have control over what’s happening or what I am thinking. But I know I have to make a change because continuing behaviors that are unhealthy aren’t helping me manage my parenting or my MS.

Hopefully, this resonates with you. You may feel similar: I don’t know why I behave this way, and I don’t want to take steps to change because the idea is discouraging. Know that you are not alone, especially in your chronic illness, and you can make those changes because I know you can. You want to achieve your goals and the only way to do that is to make changes to the unknown and what you don’t like.

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