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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Featured photo credit: Matt Hardy on Unsplash

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changing-my-internal-narrative

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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Raising Awareness for Multiple Sclerosis

To kick the month off right, let’s have a brief discussion about Multiple Sclerosis. I talk a lot about having MS, but I haven’t provided information to why it’s such a troublesome disease.

Part of the reason is it has taken me until writing this post to acknowledge the down-and-dirty parts of MS. For the last five years, I have allowed myself a vague awareness of the disease itself, but never sat down and understood the particulars. I would research as far as I needed to, but rarely allow myself to dive deeper because it was too painful to acknowledge.

In fact, if we’ve ever had a conversation in person about my MS, I rarely use the word “disease” when discussing it. You’ll find it to be the same throughout the blog. I don’t like acknowledging that I have a disease. I prefer to use the term “condition” or “situation.”

I recognize that if I am ever to be truly successful in treating and managing my MS that I need to be fully aware of the risks, outcomes, and possibilities of the disease.

What is Multiple Sclerosis?

Multiple Sclerosis is an autoimmune disease that causes the demyelination of the central nervous system. These attacks will disrupt signals from one part of the body to another which are expressed in a variety of symptoms: fatigue, brain fog, weakness, speech difficulty, and more serious manifestations.

Because MS is autoimmune, it means that the body attacks and damages itself sometimes beyond repair. 

There are three different categories of MS a person will receive when getting their diagnosis (Clinically-Isolated Syndrome [CIS] is the fourth type):

  1. Relapse-Remitting (RRMS): symptoms appear randomly and can range in severity. Once treatment of the symptoms is complete, the patient will return to “normal,” though some symptoms may persist after the flare-up. The disease progresses slowly if at all. 85% of new diagnoses receive the RRMS classification.
  2. Primary-Progressive (PPMS): neurological functions worsen at the onset of symptoms though there are no distinct flare-up or periods of remission like with RRMS. 10-15% of new diagnoses receive PPMS classification.
  3. Secondary-Progressive (SPMS): Around 50% of RRMS patients will progress into SPMS within 10 years of their initial diagnosis (specifically those who do not treat their MS). This is a progressive worsening of symptoms and neurological functions over time.

Anyone can get MS. That’s the scary thing. But there are certain groups of people who are more prone to the diagnosis:

  • People between 20 – 50
  • People further away from the equator
  • Women are 2 – 3 times more likely to get an MS diagnosis
  • Parent or sibling diagnosed with MS (~1-3% chance)
  • People with low vitamin D levels
  • People who had mononucleosis or another virus linked to MS at one point in their life
  • Already diagnosed with one autoimmune disease

It is estimated that around 2.5 million people globally have the MS diagnosis.

Why Raise Awareness

As someone who has MS, it is extremely important for me to raise awareness for the disease. The more people know about it, the more funding will go towards finding better treatments and hopefully a cure. Unfortunately, there are a lot of misconceptions about MS and the very nature of the disease can be invisible which is why awareness is so important.

Busting misconceptions

  • Getting the MS diagnosis is not a death sentence. Fifty or so years ago, before anything was known about the disease or ways to help treat it, it may have been. But now that there are so many disease-modifying therapies out there and complementary treatments, it is easy to manage the disease and help slow its progression.
  • No one is the same. If you have MS it is not going to look like mine nor is it going to look like your friend’s cousin. Yours or your loved one’s experience with MS is going to be unique to you and that’s okay. Do not compare yourself to others.
  • Start that family if you want. If you are physically, financially, and emotionally capable, the decision to have a family should not be decided by the MS diagnosis. While there may be a genetic component to the disease, you are unlikely to pass the disease down to your children.
  • No, it is not spread through the blood. Unfortunately, many blood-related organizations are still very backward when it comes to their information about MS. The Red Cross recently opened it up so people with MS could donate blood, but local and smaller blood collection agencies may reject you if you disclose your diagnosis.My heart was broken when Jai’s cord blood donation was rejected based on my MS diagnosis. They claimed they would use it for MS research but I have no way of following up with them.

An Invisible Disability

MS is a disease that can external and internally manifest itself. People with mobility devices like canes or scooters, or have handicap allowances outwardly express their MS so outsiders can be more accommodating.

But there is a whole group where all the manifestations of the disease are internal: no devices, handicap provisions, or a way for outsiders to see that we have MS.

This is what makes it an invisible disability.

Just like people with mobility devices, allowances may still need to be made for us, i.e. opportunities to rest, take extra time to work on a project, or need a few days off to treat a flare-up, but getting those allowances can be met with resistance.

My one negative experience was weeks before my actual diagnosis. I just got out of the hospital from a 5-day round of intravenous steroids to treat my optic neuritis and was in a grocery store with my mother. I was extremely weak from the steroids, lack of sleep, and overwhelmed emotionally from the experience when I slowly rounded a corner with my cart (I needed it as a means of support) and an older man started cussing me out when I got in his way.

He was telling me that I needed to give way to him (I actually had the right of way in grocery store etiquette) due to his age and I needed to move quicker. I tried to explain that I was too weak but he moved my cart while I was holding it, cussed me out, and flipped me off as he walked away.

It was a humiliating experience. And I have been fortunate not to experience anything like it again.

How to Raise Awareness

The rest of this week will detail ways to raise awareness based on your abilities. Wednesday’s post will be about events and opportunities to participate in MS activism and the community. Friday’s post will be about ways to start or participate in fundraising opportunities.

I provided some simple banners you could use on your social media accounts to help raise awareness this month for MS. Please feel free to download them for personal use.

Will there be a Cure?

At this point in time, there is no cure. But there is a lot of positive research coming out around the world about possible treatments and steps closer to a cure. From Cambridge University alone:

There are plenty of drug therapies out there that help minimize the impact of flare-ups and the progression of the disease, but we still have a long way to go before getting rid of MS and reversing its damage altogether. By raising awareness we can help keep the research momentum going and hopefully see it disappear in our lifetime.


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March is Multiple Sclerosis Awareness Month

In honor of MS Awareness month and week (March 11-17), MS//Mommy will feature a series on the following topics: raising MS awareness, getting involved, advocating for your health, dealing with an MS diagnosis, parenting with MS, and educational tools for family and strangers.

MS//Mommy blog has a new look for the month, so please stop by to check it out.

 

Raising Awareness on Social Media

I’ve made a series of banners and images that you are free to use to help raise MS awareness. These are free to download for personal use only. For professional use, please contact me.

Please do not remove the msmommy.blog credit on the photo and make sure to credit MS//Mommy in your post. Credit information for each medium found below.

Facebook

Download a Facebook cover photo for the month:

Cover Photo

Be sure to tag the MS//Mommy Facebook page when you use this photo. Don’t forget to check out the page and give it a like to follow for MS stories and relevant articles to blog posts.

If you are a Facebook user, I created this profile frame. Follow the link below to use the frame:

Twitter

Twitter banner:

Twitter Banner

Tweet credit @msmommy16 and use the #msmommyblog

Instagram

Instagram image:

Instagram Photo

Tag and include @msmommyblog in your post description and use the #msmommyblog

Share Your MS Story this Month

If you have an MS story or advice that you would like featured on the MS//Mommy Facebook page, please email me for more information.


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Checking In: MS Symptoms

What good is discussing diet and lifestyle changes if I don’t reveal the ongoing results?

Doing an honest self-assessment of any sort is hard, particularly when trying to find ways to manage an unmanageable disease. There’s a huge desire to make everything a “success” or engage in placebo effect-like thinking, but that isn’t always the case.

Overall, I feel like I am managing my MS better, but on a day-to-day basis, my mileage may vary because of various external factors.

Current Health Self-Check

Currently, I am not doing so well. Not necessarily because of the MS, but I have a weird seasonal head cold. Drippy nose, sore throat, and exhaustion. I can only assume that if a person without MS gets a cold like this they may feel wiped out but are able to go about their daily lives with minimal interference.

With MS and any illness, I get so wiped out that getting out of bed is a hardship. Ash had to stay home until Jai went down for his morning nap on Tuesday because I was so worn out. I needed the extra couple of hours of sleep this afforded me before I was able to start the day and take care of a toddler. Jai and I stayed in our PJs and read lots of books and minimized movement so I wouldn’t overdo it.

This is a key example of why getting sick with MS is “dangerous.” It won’t necessarily cause any physical harm, but infections are a key cause of flare-ups so there is a risk of needing to get steroids to treat the inflammation. I don’t get avoidant if I know someone is sick, but I do recognize that even a simple cold can knock me off my feet for a couple of days that might just inconvenience someone else.

Normally I wouldn’t write about getting sick factoring into how I am currently feeling because I tend to not get sick all that often, but since having Jai it has become a more common occurrence. 

Beyond the cold, I am feeling okay overall. There’s been some emotional disappointment in not being able to maintain my diet as strictly as I wanted, but doing what is best for my overall health is more important. My brain fog and memory issues haven’t gone away or lessened it, but that may be because I am not doing enough mental exercises to help stimulate neuron repair.

Fatigue is still an issue, but not so much on the days that I am more active. I find high-cardio days means that I have more energy throughout the day and days I do yoga there might be a greater dip in energy by the afternoon.

Being completely honest: I haven’t noticed many changes since my last check-in after my diet reset. I feel more active, happier, less sluggish, but no appreciable changes to my MS symptoms.

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