physical-appearance-with-chronic-illness

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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I Hate Self-Improvement

We’re finally addressing what I’ve thought many times and I’m sure you’ve too: I hate self-improvement.

We can pack everything up. Everyone head home. The blog’s done. Everything’s been said that needs to be told and we can move on with our lives. It’s been really nice taking this near two-year journey with you.

Okay, we all know I am joking. I still have lots to write about, and I am not ready to finish. But let’s take a moment to acknowledge this truth: self-improvement stinks because it moves us into a space of feeling uncomfortable. As discussed in Monday’s post, Bishop writes about our tendency to be risk-averse when confronted with going outside our comfort zones.

Self-improvement only comes when we get outside our comfort zone and acknowledge that what we are doing is not working. When we stick to our ruts, we do not grow. When we stop growing, we are more susceptible to dissatisfaction.

Chronic illness does a lot to keep us in our place. We feel a lot of pain wrapped up in the diagnosis. Every day is a fight to manage our health, our time, and our lives. Asking ourselves to take that extra step to make simple improvements can feel unreasonable.

Settling into a mindset of hating self-improvement is easy. And that’s okay, you can hate it. You can hate it in the same way you hate exercising, but know you should take a few minutes a day; hate eating a particular way, but know it helps you feel better; and hate taking your disease-modifying drugs, but they keep you stable or alive. No one is saying that saying to make self-improvement changes with a smile on your face.

I refuse to believe people who make self-improvement/self-help their life don’t have moments where they hate what they are doing.

You may hate exercise, eating a certain way, or taking your medication, but you know you need to in order to feel and get better. The same with self-improvement. You can hate it, but it is good for you all the same. Remember this: making simple improvements can help you better manage your illness which is what I am encouraging you to do.

The Problem with Self-Improvement

Self-improvement takes us all down the same path. The scenery may look different, but the concept is always the same: figure out what we want to change, work to change it, deal with the challenges, then recognize there’s a roadblock we need to address before moving forward.

When confronted with that “roadblock” it can stop us in our tracks because it’s distracting, makes us feel bad, and seems insurmountable. It may even be something we’ve spent a lot of time avoiding. We don’t like it and want it to go away. But confronting this roadblock head-on will help get it to go away, or at the very least, get it to have less of a hold of us.

We must confront it to find success.

Let’s say you are trying to quit smoking. In the process of trying to stop you discover there is a pleasure you get because it reminds you of your grandmother who smoked. Smoking, on some deep level, is a connection to her. When you give up smoking, there’s a sense of that connection is lost. That might halt your desire to quit: you don’t want to lose your grandmother.

But the reality is this: you need to quit to improve your health, and smoking across the board exacerbates chronic illness symptoms. The same is for self-improvement: we need to make changes because what we are currently doing might exacerbate our symptoms.

I Hate Self-Improvement

2019’s been good so far, but I haven’t enjoyed all the aspects of self-improvement. I enjoy how my mood’s improved, the improvements I’ve seen, how I feel, but I wouldn’t say I’ve enjoyed the self-improvement. But it’s been tough to get to this place.

I dislike self-improvement. It’s an exercise like my running and it’s not easy. I was saying to Ash the other day how I want a mental and emotional break. But if I stop doing my mental/emotional exercises, if I “take a break,” I will revert back to my old way of doing things. A “break” would be tantamount to a backslide and I don’t want to do that.

For the record, self-care and a break would be two different things in this situation. What I need at this moment are self-care and self-compassion. A break would be halting self-improvement because it’s gotten tough.

If I want to be a less judgmental person, I have to push through those moments where I want a break, I want to give up. If I want to eat healthier, I have to resist carb-overload temptations. I have to fight my natural tendency to want to give up when the going gets tough.

Working through the Dislikes

When we spend time self-reflecting, we see things that we want to change. If you subscribe to my newsletter, you know that last month I asked readers to come up with five things they love/like about themselves and five things they dislike/want to change.

Take a few minutes to list out five things you dislike (do not use the word hate) about yourself. It can be anything and should be the first five things you think about. If you overthink about it, you dismiss your unconscious voice, and that’s who you are trying to listen to in this exercise.

Once you’ve developed this list, keep it somewhere safe so you can pull it out throughout the month. We will hopefully find a way to address your dislikes in a healthy way. But this month will be about working through your dislikes.

Beauty in Imperfection

As stated at the beginning of March, there is a beauty that grows from the mud. We want to look at those dislikes, perceived imperfections, and parts of us we want to change and honor them. Sure, we will work to change them, but it’s these imperfections that make us beautiful and unique. Even our chronic illness.

A preview for what’s to come: if you are a subscriber to the weekly newsletter we’ll be addressing our inner toddlers. Because though we may not want to admit it, that toddler is still inside all of us.

May is going to be a difficult month. I will be addressing a lot of the dislikes I have for myself, my perceived “flaws,” and any doubts I have about myself. But like everything, I will get through it. We will all get through it and see the beauty in our imperfections.


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