humiliation-chronic-illness-help

Humiliation with a Chronic Illness

I’ve discussed how frustrating it is for me to ask for help, how the act of requesting help is a perceived admission of weakness. I’ve even highlighted the trouble I, we, sometimes have in the act of asking itself. To humble yourself before someone is humiliating, but this is for those without a chronic illness out there: having a chronic disease is humiliating.

Not being able to remember the details of a conversation I had five minutes prior is hugely frustrating, but typical for me. Having to cancel a social engagement because I am too exhausted causes more anxiety than if I went. Realizing that I am having an irrational reaction to a minor situation, but unable to control it causes a lot of shame.

These are the “in-the-moment,” examples of my MS humiliating me. I also have an unknown future ahead of me. While I try to be mindful and live in the moment, there are times where I must confront my future with the illness. I can’t be a grasshopper in my disease and live every day like it is summer. With a little one, I need to mentally and physically prepare for possibilities.

And these possibilities can be humiliating. The idea of asking for help if/when I reach one of these possibilities heightens my anxiety even if it’s all hypothetical right now.

Debilitating Disease

Has something fallen from your grip, and you know it’s due to the disease and not carelessness? Have you used store-provided scooters to get your errands done? Used a mobility cane to help you walk during an exacerbation, or because of damage done by one?

In each of these cases, you may have dealt with strangers’ stares, rude comments, or well-meaning looks from close ones. Humiliation comes not just from the outward expression of the disease, but how the condition impacts our egos. Each time we must compromise to accommodate the disease, there comes a moment of humiliation where we recognize the deteroation.

Intensifying the humiliation are strangers commenting how we should leave the scooters for those who need it; how we need to get out of their way because we’re moving too slow*; or you don’t look sick, so stop faking.

*I had an elderly stranger get snippy at me when I moved too slowly through the aisles in the days after my hospital stay. 

Admittedly, before I got my diagnosis, I did the same thing. While I kept my thoughts to myself, I often wondered if a person using a scooter or handicap placard needed them. Post-diagnosis, I am more sensitive to the fact that disability is invisible, and I shouldn’t judge strangers for using the tools available to them.

Most of us have experienced some negativity surrounding our illnesses by strangers. When these moments happen, like when the man got mad at me for being in his way at a store, it causes intense feelings of humiliation. It makes it hard to want to ask for help or take advantage of the support available to us.

Chronic Illness: the Humbler

A quick disclaimermy MS/chronic illness looks different from others. It’s the nature of autoimmune/chronic disease: each case is distinctive. I do not have to deal with the same issues as others, and I may never have to experience the same problems, but there is no guarantee the direction my MS will take. I may get worse; I may stay the same; I may get better.

I see my neurologist every year. At this point, it’s a simple check-in with my health. They like to know if I am getting worse or staying stable with my MS. Right now, I am maintaining, so it’s always a quick session. But the questions the neurologist asks are the same, and each time I go in, I am afraid of the day I have to say “yes,” to some of them. 

The question that scares me the most is: “do you have any issues controlling your urine?” My neurologist wants to know if I am incontinent, a symptom of progressing MS. I can continue to answer “no,” but there are moments in-between appointments where I am worried about my control. It might be symptomatic of my MS, or the fact I gave birth

Being faced with that question each time I see my neurologist is embarrassing, but I must be honest in my response. With incontinence affecting 80% of MS patients, there’s an excellent chance I will start experiencing it in the future. The day I answer “yes,” is the day my neurologist and I know my disease is progressing.

Knowing that there’s a chance I will need to wear urine control aids is humiliating. Let’s be realistic: the day I realize I need to start doing so is the day I have an accident. Hopefully, not in public, but it could happen.

Don’t Be Alone

In our most intense moments of humiliation, there’s a desire to isolate ourselves. Please avoid doing that as much as possible. Ask others for help or find ways to adapt to your illness as much as possible. Reach out to others for comfort, so you don’t feel alone.

I’ve said it often before: the chronic illness is isolating enough, don’t allow yourself to become further isolated.

Help is Temporary (and That’s Good)

If it helps you, remember this: everything happens in cycles. Life is one big cycle. Our exacerbations occur in cycles. You may be in a period where you need a lot of help, but it might be temporary. You may not always need as much support. You’ll figure out a way to adapt and do things on your own.

Keep that in mind if you are afraid to ask for help: this may be a short cycle, and you may not need to keep asking for help. While it is humiliating to ask, it will be a blip.

Chronic illness is humbling. Asking for help is humbling. But remember, acknowledging both and not giving into the isolation shows your resilience. The disease takes so much, don’t let it take what makes you durable.


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Featured photo credit: Canva

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ms-symptoms-optic-neuritis

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


ms-mental-fog

I’m Sorry, but I Can’t Remember: MS Mental Fog

I first received my MS diagnosis while I was in a graduate program for literature. One of the key components to graduation is the Comprehensive Exams. In these exams, it’s expected to memorize key dates, figures, concepts, and timelines to do essay identifications and write several seminar length papers with little to no help over 48-72 hours. Prior to the diagnosis, I knew I was struggling with memory issues, but I assumed it was from lack of sleep. After my diagnosis, I realized what I experienced was a form of MS mental fog.

Granted, post-diagnosis, my University was required to make accommodations for me, but my pride struggled to allow it. Acknowledging that I have memory issues is something I still struggle with today: as someone who needs their brain for their living, knowing that it isn’t working properly is a huge blow to the ego.

All of this is to say, that this post is one of my harder ones to write because of how sensitive I am about my memory.

What is MS Mental Fog?

In more technical medical terms, MS mental fog falls under the cognition category. Cognition includes information processing, memory, attention and concentration, executive functions, visuospatial functions, and verbal fluency. As listed on the NMSS website, more than half the patients with MS experience some form of cognitive dysfunction. You have cognitive dysfunction if you experience one or more of the following (but not limited to):

  • Struggle with processing information appropriately with one of your senses, like something tastes off or does not feel like it should.
  • Remembering new information, such as names or tasks.
  • Decreased ability to concentrate.
  • No longer able to multi-task or divide attention.
  • Inability to plan or prioritize tasks (important to unimportant).
  • Decreased ability to judge spatial distances or think abstractly.
  • Struggle to find words in a conversation or writing.

I know I’ve struggled with all of these at one point or another, with some of them being an everyday occurrence like the fatigue.

Dealing with Memory Issues

I assumed my memory issues had everything to do with a lack of sleep from graduate school. Like many of the “problems” I was having, the solution would be to simply sleep when I got a chance.

I got the chance on several occasions and while it did help with my memory because anytime a person is “well-rested” they improve to a degree, the problem did not go away.

But once I got my diagnosis, it was like a flood-gate had opened. I had successfully repressed and blocked out any acknowledgement that there were deeper cognitive issues up to that point. Now that I knew what was going on, I had an “aha!” moment and felt like my cognitive issues got worse.

I don’t believe they got worse, but rather, I finally acknowledged that they existed.

Teaching was a passion and I realized how much harder it became. Remembering simple concepts, answering common questions all became more difficult. I found myself having to plan out my lessons to the very minute to ensure all the important things were covered. Half my time was spent planning my classes while the other half was spent grading.

It was little wonder I had no time to work on required work for graduation. I didn’t push myself too hard because I felt useless with my memory issues. I think I hoped it would somehow go away or I would find a key to fixing it so I could get back on track.

Testing Acuity

I eventually got so frustrated with my cognitive issues that I spent a whole day testing my acuity in a lab associated with my neurologist’s office. I wanted to get a baseline of my abilities, but I also wanted to figure out if I truly was getting worse like I suspected.

A mentally trying day, I was given a series of tests where they would ask me a series of questions to test my memory. I had to rank things in various orders, come up with synonmns for words, and other tests that really stretched my brain power, reaching far in my mental reserves.


It was one of my least favorite rounds of testing, but I made it through it.

They gave me the results: I did have some memory issues, but I wasn’t nearly as bad as I thought. They mentioned the only reason why I noticed it was because I was in graduate school and needed to use my memory more than other patients, but it was small comfort.

They provided me with some insight on how I could manage my cognitive issues, but I was doing everything I needed to do already.

Seeing Some Improvements

When I got pregnant, I put concerns about my cognitive issues on the backburner. It wasn’t until after I gave birth to Jai and getting more sleep that I noticed I had a better time remembering things. It wasn’t perfect, but my cognitive issues were better.

I don’t know why I improved my cognitive abilities. I assume that during the pregnancy, my body was able to heal in the same way it healed the lesions I previously had.

I still am not at one-hundred percent. I struggle with memory recall or committing things to memory. Word recall is a struggle on a daily basis, and I still feel this barrier in my brain that prevents me from feeling like I have full access to my mind.

The Emotional Toll

This particular symptom of my MS takes a larger emotional toll than fatigue or numbness. Fatigue is omnipresent and numbness is a sad reminder of my illness – but memory fog really hits me in my ego and feelings of self-worth. It’s so hard to say to a friend “I know you told me this already, but I can’t remember what you said…” because it feels like I didn’t listen to them in the first place.

I tell acquaintances that I don’t remember their name or their partner’s name. I generally play it off as a symptom of “getting old” if I don’t know them well, but with closer friends, I will fully blame the MS. Everyone understand because I know everyone has their own form of memory blanks.

I am just painfully aware of the blanks which is what frustrates me so much.

The biggest toll the memory fog plays is in my relationship with Ash. I swear up and down that I remember a conversation in a particular way, and he remembers it differently. I get extremely frustrated because it feels like he’s not listening to me or trying to mess with me, but deep down I suspect that he’s right and I just can’t remember anything because of the MS.

Having memory issues is one of my biggest personal fears. When I learned about Alzheimer’s, I freaked out over the idea of losing control over my mind. MS creates the same sort of fear: with each exacerbation I have, I increase my chances of cognition issues becoming permanent. What if my MS takes me down the road similar to Annette Funicello? Would I know who I am or would I be trapped in my immobile body?

As with many other symptoms, I’ve learned to place my fears aside and work through the steps of self-compassion to manage the MS. I am keeping myself mentally active through reading, writing, teaching, and playing puzzle games (all recommended by the people who tested me), and stretching myself mentally often.

I still have my moments where I am extremely frustrated by my lack of mental abilities, but they are becoming more infrequent. I think that’s all I wanted to say, but I can’t remember.


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Featured photo credit: Michelle Melton


2019-MS-Awareness-Month

What is Multiple Sclerosis?

Portions of this post appeared during 2018’s MS Awareness Month. I have updated to reflect new information.


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.

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.
  • You can look and be glamourous despite an MS diagnosis. Just look at Selma Blair at this year’s Vanity Fair party. Using a walking device can double as a fashion accessory and wearing gowns can be a more common occurance. MS does not have to take away your sense of style.

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.

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.

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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2019-MS-Awareness-Month

Through Adversity Comes Beauty

Normally Friday’s posts are for newsletter subscribers only, but for the 2019 MS Awareness month, I want to open up the posts to all readers. Raising MS Awareness is very important to me, so I don’t want anyone to feel excluded. If you aren’t a newsletter subscriber already, sign up now.


This year, MS Mommy Blog’s MS Awareness logo is a heart-shaped ribbon with a lotus flower at the center.

The lotus is deeply symbolic across the world, due to the plant growing out of the murky mud into a beautiful flower. So is the same for those of us with MS (or any chronic illness for that matter): through the murkiness of our disease do we grow into beautiful beings. The lotus reminds us to be compassionate, courageous, mindful, inner peace, and wisdom. These are qualities necessary to managing a chronic illness.

So for this year’s month of MS awareness, let us keep the symbology of the lotus within our hearts and remember through our personal adversity we are still beautiful people. The adversity shapes us and makes us stronger.

Ways to Raise Awareness

Just like last year, the MS Mommy Blog has a variety of ways to spread awareness on your social media accounts. If you use any of these images, please tag the MS Mommy Blog or use the #msmommyblog.

Facebook Profile Frame
Follow this link to try out this year’s profile frame.

Twitter Header (tag msmommy16)
Follow this link to go to the twitter header download page.

Facebook Banner (tag MS Mommy Blog FB Page)
Follow this link to go to the Facebook banner download page.

MS Mommy Blog Store

Throughout the month of March, the MS Mommy Blog store will be adding new shirts to help spread MS Awareness and show off the “Many Strengths” we have as we fight MS. A portion of each purchase will go to the National Multiple Sclerosis Society.

Follow the link below to see the wide variety of shirts available.


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