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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Self-Compassion-book-review

Book Review: Self-Compassion

Almost a year ago I recognized I needed to change the relationship I had with myself.

I had a lot of negative emotions with no healthy outlet other than taking it out on myself. I searched online and through my subscription to Audible, I found several books to listen to while I was taking care of Jai.

That’s when I stumbled upon Dr. Kristen Neff’s book Self-Compassion. It was the first book I listened to it because the description spoke to me: finding a way to cope with the debilitating self-criticism I experienced every day. I listened to the book on my way to-and-from therapy, finding that it helped deepen each session.

Since first listening, or “reading” the book, I have found a marked difference in my demeanor and how I respond to negative feelings for myself and even for others. I’ve talked an awful lot about this book throughout my blog, so it was time that I sat down and actually reviewed the book.


What follows is my review of a book I chose on my own. I did not receive any compensation for this review.


Book Information

Title: Self-Compassion, The Prove Power of Being Kind to Yourself
Author: Kristen Neff, Ph.D
Date Published: 2011
Publisher: William Marrow
Pages: 305
Genre: Self-Help
Goodreads Links
Amazon Link (non-affiliate)
Official Book Website


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self-compassion

My Self-Compassion Journey

This post contains potentially disturbing material surrounding the topics of self-harm, self-hatred, and other self-destructive topics that might be troublesome to readers. If you or someone you know engages in this behavior, please know that you are not alone and there is help out there. Here’s a wonderful resource to get started.


I sometimes come across as a know-it-all. Ash has experienced it first-hand and it’s only a matter of time before Jai tells me that I don’t know what I am talking about. Dunning Kruger is real with me. It’s one of the reasons why I loved teaching and I love blogging. 

But when it comes to this month’s topic of taking care of yourself as you undergo a personal growth journey, know that it is actually coming from a place of experience.

I have experienced a lot of pain in my life, many of it directed towards myself as a coping mechanism for emotions that got to be too much. It wasn’t until I embraced self-acceptance and self-compassion that I was finally able to push through my journey and fully embrace who I wanted to become.

For today, I wanted to touch base on my own experience engaging in self-compassion and provide some light as to why I am constantly pushing it as a way of thinking, especially with a chronic illness.

The Trouble with Emotions

Emotions are so sticky and frustrating at times.

Growing up I never received the necessary training on how to effectively and healthfully manage my emotions. In New England, any sort of expression of emotion was frowned down upon so I learned to suppress my emotions as much as possible. Because I did not have a good outlet to manage my emotions, I turned them inward and started taking all the frustration out on myself.

Self-Harm as a Coping Mechanism

Rather than finding a healthy way to manage my emotions, I found that hurting myself was the only way to let all the negative emotions out. It was partially as a form of relief, but also a form of personal punishment.

I felt like I deserved the pain I caused because of something minor I did. I had a tendency to burn myself with matches and candle wax. I would spend hours picking at my face for perceived imperfections, not even stopping after I drew blood. I graduated at the end of high school to cutting my upper arms and hips, with some scars still there today.

I’ve seen other examples of self-harm online and mine were never extreme. While I still have scars, I felt like I was an imposter, a wannabe looking for attention when I hurt myself. Yet I hid my scars and scabs so no one knew what was happening. It was my secret and I did not want to have to answer questions.

I was doing this because I did not love myself and I needed to find a way to help me overcome this unhealthy behavior.

Therapy but then What?

When one self-harms, the first piece of advice everyone tells them is to go to therapy. Therapy is wonderful if you have a good guide in your therapist, but finding a “good” therapist is a lot of work. Especially when you are emotionally drained and the mere thought of looking for a therapist is overwhelming.

I am not deriding therapy, in fact, I absolutely encourage it as a means to effectively and healthfully work through any difficult and frustrating emotions you are feeling.

Here’s the “but”: therapy is a partnership.

You enter a relationship with your therapist and if it’s not a beneficial, productive, and has an unhealthy dynamic, then it is important to look for a new therapist. Therapy should be supportive and productive and the dynamic between you and the therapist must be a healthy one.

It took me several therapists and therapy styles before I settled on one that works for me. While I won’t say what style it is, I can say that without my therapist telling me directly, the focus in each session is self-compassion. We work together on finding ways to love myself, imperfections and all.

I think my experience with various therapists and styles helped me be receptive to the idea that my imperfections are part of what make me, me. Perfection, though we may desire it, is rather boring. The asymmetry in my life, my flaws, mistakes, bad behaviors: that’s what makes me an interesting person.

A therapy style that focuses on self-compassion may not be for you. You may want to do that outside of therapy, or not at all, and that is okay. It’s really about finding what works for you and getting yourself into space where you are able to love yourself.

You’re Never Prepared

Whether you are in therapy or not, when you are starting a personal journey to wellness, a lot of junk comes up and that can distract you from continuing with your personal goals. I say junk because it really can be clutter that serves to distract you from making positive changes.

I am not demeaning whatever that “junk” may be because it might be something you need to deal with, but the important thing is to take a moment (or month or year) to really work through the stuff weighing you down and finding a way to let it go or work with it.

This isn’t saying “just move on” or “just get over it.” Absolutely not. Some things you can’t get over. Some things are so ingrained within us and define us or are a part of us that there is no way to “get over it.” Rather, it’s about recognizing what you can change and what you have to work with and learning to love yourself through self-compassion to help manage it.

Dealing with crippling depression? The last thing you want or are able to do is to say “I am worthwhile and I deserve to love myself.” But if you are able to take a single moment in the darkness to say it, it may bring a small comfort to help you get up for a few minutes to work on something before retreating. It’s about taking those small steps, no matter how small they may be, that can get you moving in a healing direction.

You are never prepared for what comes up when working through things, or trying to make self-improvement changes. I have found that I can be going along thinking everything is okay and then something pops up that distracts me and demands my attention. That’s why I’ve had to reframe how I look at my whole journey.

Self-compassion helps with that re-framing.

How I Deal with Emotions Now

Since working with self-compassion on a more conscience level I have found that my desire and action for self-harm has lessened greatly. I still instinctively hit my head or leg if I have a particularly distressing thought, but it is no longer on a daily basis, multiple times a day.

Now, I have a split second between that thought and my arm raising to stop myself. I can use a mantra I’ve created for myself to stop the behavior before I do anything. I self-soothe myself into a more calm state by putting my words and situation in proper perspective. There are still times where I will react to my thoughts too fast, but once I realize what is happening, I can stop it from continuing.

I am also finding my negative thoughts/actions in previously emotionally charged situations lowered. Before I might dwell on something for hours on end, get territorial over something extremely petty, or imagine hypothetical scenarios with confrontational outcomes; but now I just let it go quickly. I still may have a minute our two where I think about it, but it no longer consumes me in the way it once did.

In short, I feel healthier and less stressed than even a year ago. The other day I came to a wonderful realization about how well I am managing my MS (more on that in an upcoming post) and this is without medication. I can’t even begin to imagine where I will be when I start up my MS medication again.

I may be unstoppable.

Self-Compassion is a Journey, not a Destination

Once you’ve come around to the way of thinking and embracing self-compassion know that that’s not the end of it. Self-compassion is something that I’ve had to practice with myself every day and mindfully practice. There are days where I don’t think about it or it is unnecessary, but there are other days where an old memory will pop up or I do something that I regret and want to take out on myself.

It’s in those moments that I have to remind myself that I am worthy of my love and I need to be kinder to myself.

There isn’t going to be a moment where I can say “I can stop being self-compassionate now, I’m healed!”

Life is, well, a life-long journey. In 20, 30, or possibly 50 years I will still need to engage in self-compassion. It will hopefully come more quickly to me, almost reflexive because of all the work I am doing now, and I may not even recognize that I am doing it.

Regardless, now that I’ve discovered this healthy method for dealing with my emotions and feelings, I have no plans of turning back.


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Featured photo credit: Michelle Melton


treating-chronic-illness-with-self-compassion

Treating Chronic Illness with Self-Compassion

This post will be discussing some pretty heavy topics that may be bothersome to some readers. Discussion of self-hatred and self-harm are within this post. Please read responsibly and remember that you are not alone in your journey.


Over the past couple of weeks, I’ve discussed using self-compassion as a means of dealing with a chronic illness, but I haven’t gone into much detail over how and why that will be helpful. A lot of things happen when dealing with a chronic illness or a disease that severely impacts your life. You go through various stages of grief, wishing your life would be normal, and you hopefully get to a point where you accept that “normal” isn’t going to look like everyone else’s.

What happens is a lot of feelings of personal frustration towards the illness and yourself. When this happens, it’s important to treat yourself with a loving acceptance so you can begin to heal emotionally.

Body & Mind Betrayal

The biggest stumbling block is the betrayal of mind and body (dependant on the illness). Our mind doesn’t understand why our body no longer responds in the way it once did. If we were able to go an entire day without needing a break, our mind struggles to accept needing a nap mid-morning otherwise we’d collapse. Often questions such as these come up:

  • Why is my body like this?
  • What could I have done differently?
  • How/did I cause this?
  • Why did it have to be me?
  • Will I ever be healthy or whole again?
  • Why can’t I be like everyone else?

The answer to these questions, if there even is an answer, varies from person-to-person. Some illnesses just need an appropriate medication regimen to return a person to normal, and for others, we will have to adapt to the new normal. When we are able to compare our life now to what our life once was, feeling frustrated, angry, and betrayed by our body is normal.

Normalizing Self-Hatred

I already dealt with self-hatred before I was diagnosed with MS. When I received my diagnosis there was a time where I thought that I deserved it. I was a bad person and bad things like this happen to people like me.

Because I reached to self-hatred as a coping mechanism, I normalized my self-hatred even further.

If you never dealt with self-hatred prior to your diagnosis, you may not have an issue with it now, but there’s a possibility you start feeling hatred for you body post-diagnosis.

That self-hatred may be beyond your control. Some illnesses can change brain chemistry to make you feel and think things that aren’t normal for you. The very act of getting the illness could bring about feelings you’ve never experienced before in your life. I am not saying that everyone will hate themselves, but if you’ve noticed it happening more in your life, it may be because your chronic illness.

It’s important to recognize this happening and finding a way to healthfully manage it.

Working with your body even when it won’t work with you

With some chronic illnesses making meaningful physical and emotional changes can be difficult. Especially if you want to jump from zero to sixty within the next year or so. I am the kind of person who wants to jump fully into a new endeavor without considering logistics or consequences.

Exercise, both mental and physical, is extremely important in managing chronic illness symptoms. It can reduce stress, minimize symptoms, and help your overall perspective – moving you away from feelings of self-loathing. This won’t be a cure-all, but it is a great way to complement the care you are giving yourself as you manage your illness.

Because you know your body better than anyone, even a healthcare provider at times, you know what you are capable of and able to push yourself to do.

That said, sit down with a professional in whichever arena you want to start working on to help guide you through the process:

  • Emotional changes: ask your neurologist or healthcare specialist for a therapist/psychiatrist/psychologist recommendation. Chances are they know someone who specializes in your illness so you won’t be playing catch-up with the nuances. If they don’t have one, insurance portals can have a list of recommended professionals.
    • Go in with a plan of what you want to work on. This might be feelings of doubt, depression, self-hatred, frustration, or learning to cope with your new normal. A plan does not need to be strictly followed, but it will give you some direction to get started.
    • Don’t just settle on the first therapist/psychiatrist/psychologist you try out. If you don’t feel comfortable with them or that they aren’t listening to your needs/concerns – move on. You want someone who works with you, not against you. Especially with the mental and emotional work.
  • Physical changes: speak with your healthcare professional for some ideas on an exercise program or prescription for physical therapy. If they aren’t able to provide a cheap/free program recommendation for your situation, get their honest opinion of what you are capable of doing, especially on your own. Use that information in your research.
    • Look at the main awareness website for your chronic illness. Many of them have articles written on exercise recommendations for people in your situation. It’s a great starting point.
    • Look at a local pool for swim classes to get you started. If you have mobility or inflammation issues, the water can help alleviate stress on your body while helping to keep you stable.

Additionally, stick with whatever medication regimen recommended by your healthcare professional. If it’s not working for you or you are having really bad side-effects, bring this information to your doctor. Self-care begins by following peer-reviewed and tested medical practices. It won’t be one-size-fits-all, so you’ll have to make adjustments, but make those adjustments under the guidance of a professional.

The goal in taking these steps is regaining a sense of control over your mind and body. This will help you when you need to engage with self-compassion when you need it.

Treating Chronic Illness with Self-Compassion

Self-compassion is about giving yourself permission to feel bad and have bad days. It’s about being gentle with yourself when getting out of bed is the last thing you can think about. It’s also about pushing yourself a little harder because you know you are capable of completing a task.

Self-compassion is giving ourselves the advice we’d give friends in similar situations. With a chronic illness we’re stuck in our own perspective and sometimes unable to see that we need the love we’d give our friends (and our friends might be giving us).

Creating a mantra, an exercise we practiced in a recent newsletter, to help respond to any doubts or feelings you frequently have will help get you started on your path of self-compassion.

A good starting point is to answer those questions we asked ourselves earlier:

  • Why is my body like this? This is my body with my illness and while I may not have an answer to the “why,” it still takes care of me by functioning.
  • What could I have done differently? Unfortunately, chances are there was nothing I could have done differently. These things happen and it wasn’t my fault.
  • How/did I cause this? (If my illness is based on behavior or exposure from my past, I played a role, but that is in the past.) Chances are, nothing I did caused this, therefore blaming myself is unproductive. My present is now and I will move forward by loving what I am in this moment.
  • Why did it have to be me? Nothing out of our control happens to us to single us out. It happened and the only thing I can do is move forward and take control over my life in whatever way is possible.
  • Will I ever be healthy or whole again? I may never return to what I once was, but I can be healthy and whole in a new capacity. Having a chronic illness does not have to impact my outlook or ability to make changes.
  • Why can’t I be like everyone else? Sameness is overrated. This illness might bring out a part of me I never explored otherwise and I should take advantage and love that about myself.

Self-compassion will not cure your illness, but it can make it easier if you treat yourself kindly as you work through it. I have found that with self-compassion I am able to make more rational decisions about my health and stay motivated when I create a personal goal for myself.

It is important to see ourselves as worthy of our own love, illness and all, because we have so much we can contribute to all around us.

If you’re a subscriber to my newsletter, you’ve already seen some of the content and suggestions I’ve been making for readers. If you aren’t, it’s never too late to sign up and join the challenge.


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Featured photo credit:  Kinga Cichewicz on Unsplash


chronic-illness-and-self-care

…Before Loving Anyone Else

On Monday, I discussed the importance of self-soothing as a means of disease management. Chronic illness and self-care go hand-in-hand, but sometimes we are asked to care for others when needing to care for ourselves.

As a mother, I have to put my needs aside for Jai, but sometimes that’s impossible to do. If I don’t take care of my own needs, I won’t be able to take care of Jai’s. Which is why granting ourselves permission to be selfish is a good thing.

Self-Care Goes Beyond Self

As counter-intuitive as it may seem, caring for ourselves first is the best way to care for others. If I am emotionally incapable of taking care of Jai’s needs because I am so worn out from dealing with other issues, I won’t be able to provide the care that he needs. Rather, if I acknowledge that I need to take a few moments for myself, even if Jai is running around and super active, then I should do so.

If you want to be an effective partner, parent, or friend – take care of yourself first before taking care of others. It’s hard to accept or even want to do because being “selfish” gets a bad reputation. When we say “I must put myself first,” we are being selfish, but selfishness can be a good thing. Especially when we are dealing with others.

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