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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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Reflecting on Life Before a Diagnosis

My MS diagnosis was one of the best things to happen to me. I hate admitting this because it means I needed a chronic illness to shake me out of complacency. I am one of those people that needs to be smacked in the face, hard, to get an important message. I know this because I’ve reflected a lot on my life prior to my diagnosis.

Hopefully, I learned the lesson to listen more closely to life before it needs to hit me with another big smack.

I think it’s important to acknowledge and honor our life before the diagnosis. It’s so hard to look back at that time: seeing how capable we were, what we could do, what we took for granted…

I wanted to highlight some of the thoughts I’ve had while I’ve self-reflected on my life before my MS diagnosis. Towards the end of the post, you’ll find some of the same questions I asked myself to get you started.

Unhealthy Before the Diagnosis

To say that I was unhealthy prior to my diagnosis is an understatement.

I was unhealthy in body, mind, and emotionally speaking. I will primarily focus on the negative aspects of my life in this section. As I mentioned last Wednesday, self-reflection takes us down paths we would instead not acknowledge. I have a lot of pain I carry around in my life, and I’ve found what I’ve done up to this point has not worked in effectively managing it. I noticed looking at the origins of the pain helps me begin the process of healing. I am able manage situations differently, in a mature manner, and manage my MS until I am ready to get back on medication.

I broke down each section of my life where I did significant self-reflection.

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Recovery after an MS Exacerbation

So you’ve had a relapse/exacerbation/flare up. Hopefully, you’ve already had the conversation with your healthcare professional about managing the flare-up. You may take high doses of steroids to reduce the inflammation, but you’re coming down from the drugs and looking at recovery. What does recovery after an MS exacerbation look like?

Like all things MS related, your recovery is going to look different from mine which is going to look different from someone else’s. Having some ideas of what you can expect and what you can do on your own might help plan your next exacerbation recovery.

I am not a healthcare professional so all that follows should not be taken as medical advice.

Relapse-Remitting & Recovery

With Relapse-Remitting Multiple Sclerosis (RRMS) there’s a chance of recovery after each exacerbation. That means, there’s also a chance you won’t go back to the way you were prior to the flare-up. After my second major flare-up when I was abroad, I never got my full feeling back in my right index finger and thumb.

When you don’t go completely back to the way you were before, it’s extremely frustrating. But there are some ways to manage your recovery as a means of self-care, i.e. taking back control of your body. These are forms of complementary care: suggestions to work in tandem with your medical treatment.

Because I have RRMS, I can only speak to what recovery looks like after each exacerbation. If you have Primary-Progressive or Secondary-Progressive, recovery is going to look completely different. What follows are based on my experience dealing with RRMS.

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Stress and MS



Stress and MS.

These two go hand-in-hand. Without one, you wouldn’t get the other. Stress is a universal problem, something everyone deals with at some point in their life. Sometimes it is good, it motivates us to push through a problem for a solution. Other times it can hinder us and negatively impact our health.

I’ve talked about stress multiple times on the blog, but I knew that for MS Awareness month it deserved its own post. Stress plays such a big role in coping with MS, that for some of us, it induce our initial symptoms.

What is Stress?

Experts talk about stress on the morning talk shows. We complain to friends about it. Universally, we know and understand stress. But physiologically, what is stress and how does it affect someone who isn’t suffering from MS?

Stress is the body’s response to changes in mental, emotional, or physical changes. While the body is designed to handle stress, too much can trigger a negative physical reaction. If enduring a period of long and extreme stress, you are more likely to get sick. Your body starts to work against itself: ulcers, headaches, depression, anxiety/panic attacks to name some conditions induced by stress.

But it’s not always a bad thing.

Stress as a Positive

I firmly believe in good and bad stress. I thrive on positive stress: working on an important personal project and working up to the deadline to complete it.

Stress is one of the main drivers to get me to write as much as I do for the blog. It keeps me on track and keeps me posting.

I find that it’s such a major motivator in my life: I am freaking out to complete something, but I feel so productive once it’s accomplished. Turns out that “good” stress is a thing: it’s also known as eustress. Eustress we know we can handle and it’s usually short-term. It’s not necessarily easy to handle, but it’s manageable and can be used to drive us forward.

It’s what helps make an effort towards self-improvement.

Stress as a Negative

When we think about stress, it’s usually negative. It’s what causes us to freeze and feel burnt out. It’s hard to work through and can leave us feeling tense and angry.

This sort of stress is the kind that shortens your lifespan. It’s the kind that you have very little control over. When life throws hurdle after hurdle at you, and there’s no way to get out from underneath it, it’s this form of “distress” we experience.

This distress is where morning shows stake their segments upon. We buy books, browse blogs, pin ideas, and take classes all trying to cope with the distress we experience. We want to get rid of it because of how uncomfortable and miserable it makes us feel.

Unfortunately, we have very little control over when it ends and what it does in our lives.

Stress and MS

I spoke with my neurologist a year or so into my diagnosis and mentioned a potentially stressful situation. I asked him about how this situation would impact my health and my MS.

“Negatively,” was his response, “ask [those involved] to knock it off and do you want a prescription to give them?”

We had a good laugh over the absurdity of doing such a thing, but it got me to thinking. I was still in the middle of a stressful situation with graduate school and I wondered if it was contributing to some of the “secondary” MS symptoms I experienced: memory fog and fatigue.

I was not wrong: stress does lead to flare-ups. Curious enough, having MS (or any chronic illness) can cause stress too. It turns into a vicious cycle: you worry about the disease, the disease acts up, which stresses you out even more.

Exacerbations Induced by Stress

This study, published in 2004, looked at all the studies associated with MS, stress, and exacerbations over the period of thirty-eight years. They found a connection between stress that increases the chances of exacerbations with those diagnosed with MS.

If you have MS and found that your exacerbations or just your normal symptoms get worse when coping with a stressful situation, you aren’t imagining it. I personally found relief in knowing that managing my stress was a way to lower my chances of getting an exacerbation.

I understand that I am in a unique position to be able to manage my disease to lower my chances of an exacerbation. Not all people with MS are able to do so, if at all. There are days where stress gets close to causing an exacerbation, but I am able to recognize what is happening to help slow everything down to avoid it.

The Emotional Toll

Anecdotally, I can say for certain that extremely stressful situations, particularly relating to my personal life, increases my chances of getting an exacerbation. I was shocked at how quickly a flare-up appeared when I was in the middle of an extremely stressful moment and my arm started to go numb. Normally, I wake up with the exacerbation. It doesn’t literally happen before my eyes.

Thankfully, when I resolved the situation, the numbness went away within a day.

What’s most annoying about stress is that I have to plan my life around it. I have to take it into consideration when making major decisions. Will this freak me out? Will this bring on an exacerbation?

As I mentioned in my posts about toxic relationships, I’ve had to learn to be okay with cutting toxic people out of my life because of the problems the relationship induces. It’s discouraging when I have to manage relationships for my MS because there’s always this fear of lacking compassion on my part.

I’ve had to learn how to deal with feeling selfish which is always an uncomfortable place to be in.

Managing my stress is emotionally draining and stressful in itself. Later this week, I will discuss how exactly I manage it. Hint: self-compassion is involved along with learning to no longer care.


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Featured photo credit: Leah Kelley from Pexels


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MS Symptoms: Optic Neuritis

The very first MS symptom I experienced was Optic Neuritis. I woke up one morning in a hotel room unable to see out of my left eye after a stressful experience. I’ve talked about this particular symptom throughout the blog because it played such a significant role in getting my MS diagnosis.

From the time I’ve spent in online MS support groups, I’ve found that the majority of other people with MS received their diagnosis after experiencing the optic neuritis exacerbation. I imagine it is the shock value: waking up and suddenly having a blob in your field of vision? You have to pay attention to what is going on because it is literally in your face.

What is Optic Neuritis?

Simply put: it’s an inflammation of the optic nerve which causes a temporary loss of vision. It can be painful and is primarily linked with Multiple Sclerosis and a few other autoimmune diseases such as Lupus.

Symptoms of optic neuritis include:

  • Pain
  • Loss of vision in one eye
  • Reduced field of vision
  • Loss of color (colors are muted or vision is grayscale)
  • Flashing lights

Optic neuritis is primarily treated through steroids to help reduce the inflammation.

I cannot diagnose anyone online, but I can offer a suggestion to bring to your healthcare professional for discussion:

If you are experiencing loss of vision in one or both eyes and your otomotrist, primary care provider, or opthalmologist are unable to figure out what is going on, consider asking them to test for optic neuritis. I wish someone had told me to consider this option early on as it would have reduced months of confusing and frustrating tests and gotten me the necessary treatment sooner.

Canary in the Coalmine

While the L’Hermitte’s Sign is one of the first indications that I am really stressed out, waking up to an optic neuritis blotch in my field of vision means I have an exacerbation requiring medical intervention. Sometimes I get numbness in my limbs, but I know that I am in trouble when I cannot see or am losing vision in one of my eyes.

Prior to my diagnosis, I was completely unaware as to what was causing my optic neuritis flare-ups. I thought migraine auras, as I had migraines previously but no auras. I would eventually get a migraine and the optic neuritis would fade away, but I can imagine it was a coincidence.

Now, if I get the slightest blotch in my eyes, I immediately contact my neurologist so we can come up with a treatment plan. Sometimes we wait and see if it gets worse and other times I get on some steroids to help reduce the inflammation. Regardless, I know I need to figure out what is stressing me out to cause the initial inflammation episode.

Invisible Symptom = Lying?

Many people with MS have that story.

That story of: “but are you really sick or are you just lying for attention?” My optic neuritis gave me my first and hopefully the only story of ableist treatment by others.

It was prior to my diagnosis and I volunteered in graduate school over the summer. This position required my sight. No amount of accommodations would work: I needed to be able to read to perform my duties as a volunteer.

I tactfully told the people running the program that I could not volunteer and teach at the same time due to some health concerns. I couldn’t stop teaching, so I figured all unpaid work could wait until I was feeling better or at the start of the fall semester.

Because it was summer and I made plans prior to my flare-ups, I went to a concert with a friend and posted about it on social media.

I didn’t realize this caused a stir with those I volunteered for until someone unaffiliated reached out to me. I remember the conversation divulging how people said I lied about my health to get out of volunteering my time.

I was flabbergasted at so many people: at the person bringing this information to me; those in charge; and everyone unaffiliated with situation talking about how I was faking my health issues. My health issues were none of their business and they did not know how I got to the concert. I told the person who started the conversation that concerts do not require sight and I deserved a bit of a break from my health issues if only for a night.

This accusation of shirking my duties made me feel insecure about my health that I felt obligated to overshare with the program once I got my diagnosis. Up until recently, I would explain my issues with MS as a reason for not doing something.

I am at a point where I realize that I do not owe an explanation for myself or my health.

The Emotional Impact

Warning: talk of self harm ahead. If you or someone you know self-harms, please know you are not alone.


Now that I know how to treat this exacerbation, I typically go with the flow and it’s more of an inconvenience than anything. I am bothered when it happens, sure, but that has more to do with feeling frustrated that its happening in the first place.

But when I didn’t know what was going on, this symptom caused the greatest emotional breakdown I had prior to my diagnosis. I needed to see for school and work, I could do neither. I was terrified because the doctors were not providing me with any information or hope of getting better.

Each day, I would wake up hoping I could see out of my left eye again. Each day I woke up unable to see I grew more and more anxious and frustrationed with my body.

I remember taking a shower one day, in the middle of my worst optic neuritis exacerbation (I couldn’t see out of both eyes), completely frustrated over no answers to what was happening to me. I started bashing my head against the side of the shower wall because I was so angry at my body that I wanted to knock the sight back into my eyes.

Fortunately, Ash was there and heard the banging that he immediately jumped into the shower to stop me from causing any serious damage. I was lucky to not concuss myself or cause any lacerations. I just remember him holding me down to stop me from harming myself further and comforting me as I cried for myself.

It was one of my darkest emotional moments.

Even thinking about it puts me back into that mindset of abject hopelessness. That complete lack of control and confusion is indescribable. I hope never to be in that place again.

Once I was in the hospital after my MRI, I felt so much relief in finally getting treatment. An answer was secondary at that point, but I was glad to be on the road to receiving one. If you are interested in reading how I’ve learned to manage this symptom and my cognitive fog from Monday’s post, please sign up for my newsletter. I will be discussing both symptoms in Friday’s newsletter.


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Featured Photo Credit: Amanda Dalbjörn on Unsplash