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Identifying Wellness Changes

So often I get caught up with what’s going on in my life, at the moment, that I don’t take the time to step back and appreciate my development as a person. It’s easy not to recognize how we’ve grown as a person, partly because we are too close to the situation.

Or, more often is the case for me, I don’t reflect on the changes I’ve made and assume I am staying in one place. I presume that I am not experiencing growth because I don’t think of identifying my maturation. If I am bogged down with routine, I take for granted the moments where I behave differently than in the past. I miss seeing the benefit I am getting from my wellness changes.

It’s essential to appreciate the changes we’ve made, no matter how minuscule they might seem, because any change in a positive direction is a great start.

Identifying Changes

Back in February, I devoted a whole month to self-reflection. If we want to see what changes we’ve made throughout this year, we have to dive back into the self-reflection process. Hopefully, this will be less painful than a full-assessment of ourselves. If we feel like we haven’t done a lot of internal work this year, there might be a hesitation to self-reflect because of shame.

Unfortunately, we’ll have to push through those feelings of shame. At the end of the year, take a few moments to reflect on the positive. When your mind drifts into negative thinking, find something positive you did recently, and see what motivated you to do it. 

How will you know a change you made throughout the year is a positive one?

When making wellness goals, we often say things like: I want to exercise more, eat healthier, feel more satisfied, etc. And we’ve been through this cycle before: after making changes, two things happen. We “Fail,” as in, we give up. Or, we “fail” because we don’t notice changes quick enough, and feel like we are wasting time. 

It’s the lower-case “fail,” that we are examining today. Chances are if you don’t notice any positive changes in your life for the year, you didn’t fail. You just aren’t looking hard enough at what you have done. If you are continuing with your changes, despite not seeing the results that you want on time, consider this: you are sticking with it, and that counts as a success.

The entire point of this blog is tracking my wellness journey with MS as I wait to restart my medication. I wanted to get healthy to help manage my flare-ups and to provide a positive example to Jai. There are plenty of days where I don’t think I’ve made a difference in my life. I don’t see the results, so I assume I am spinning my wheels.

These last two months are proof that I’ve made changes, and the changes are working for me. I wrote about Lytton’s health issues at the end of October, and less than a month later, we had to say goodbye. The week we put him to sleep was stressful, surpassing the week I spent in the hospital utterly clueless about what was wrong with me, pre-diagnosis.

Not counting watching Lytton suffering through the final hours of his ailment, I fell from running the week before, Jai was sick, I had a mild infection, stress of an upcoming trip, and wondering when I would find time to catch up on the blog like I planned. Spoiler: I never caught up by evidence on the tardiness of this post.

When the dust started to settle, about a week or so later, I took a moment and realized something. I did not experience a flare-up. Given the amount of stress I was under, all the various negative moments I experienced, I was relatively calm and no indication of a flare-up.

I was pleased with myself. I weathered a hurricane of adverse events that, at any other point in my life, would have left me feeling defeated. I acknowledged that there are cycles in life where it feels like everything is piling on. I am in that cycle, but it will end, and I have to stay calm until then. I can’t fight life, as fighting will cause more stress. If I remain steadfast, acknowledge the feelings of frustration or sadness as they come up, and keep moving forward, I won’t drown in self-defeat.

Additionally, I experienced relapses for less. Granted, I still have a few days here and there where I want to stay in bed for a few hours over Lytton’s loss, but I know it’s coming more from depression and not from my MS. The fact that I am still managing my MS without medication and not undergoing a relapse shows me that the changes I made are working. 

Hopefully, you aren’t experiencing a down cycle where life is piling on to show you the effectiveness of your life changes. But I hope you take this away from the post: even if you don’t notice the changes working, chances are you are in a better space than you were before you started.


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Become a Leader

Are you a leader? Have you wanted to be one, but didn’t know how? Or does that thought terrify you?

For some people, the idea of being a leader is appealing. For others, it strikes to the core of deep anxiety. As Uncle Ben once said to Peter Parker, “with great power comes great responsibility.” Leading is a source of power, and because of that, it cannot be tackled lightly. It is why, for some people, it creates anxiety, as they recognize this responsibility. 

But anyone can be a leader, and sometimes you become one without realizing it.

A leader does not need a large group of people, and in fact, they don’t need a group of people at all. You know the phrase “lead by example?” Sometimes living your life on your terms with your chronic illness is enough to become a leader.

I found in my chronic illness journey, even before I blogged about it, I answered questions. I set an example of living with a chronic illness. Looking back, I wasn’t particularly good at it, but I’ve hopefully improved.

Since starting my blog, it’s led to me answering more questions about MS and living with an autoimmune disease. I answer questions about my diagnosis as someone else struggles to figure out what’s going on with their health. 

Without intending to become one, I am a leader within my social groups. I don’t say this with expectation; it’s just a fact. People look to me to provide them with answers and recommendations. When I realized this happened, I recognized I needed to take the role seriously and understand all that goes along with leading. 

The key to effective and stress-free leadership is knowing when to lead and when to follow.

When to Lead

There are many situations where it’s appropriate to lead: healthcare, life, and social scenarios are a few. Besides your own life, in any form that may take due to your illness, the most crucial space you lead is with your healthcare. You cannot help others, nor can you help yourself if you are not a strong advocate for yourself.

You know your body better than any doctor. You know exactly how you are feeling, even if you do not have the words to describe it. I am not saying to reject what doctors have to say or ignore their training. But, if they dismiss you when you know something is wrong, you have to advocate for yourself.

You have to lead and assert your needs, wants, and concerns. If you anticipate resistance in the doctor’s office, find resources that can help you state your concerns so you feel heard. Be respectful to start, but increase your assertion if your healthcare professional brushes you aside.

Another space that calls for leadership, intended or not, is deciding what’s best for you and how you approach your illness. What this means is there will be times when you reject social get-togethers, leave early, or cut off relationships because you must care for your health first. Find ways to say “it’s okay if I put myself first,” as much as possible. 

People will understand that health must come first, and if they don’t, those are the first relationships you should examine.

Often, I find people respect it when I say to them that I must engage in self-care. I still struggle to pre-emptively articulate it to others. With a simple explanation, I can express why I am quiet or declining social events.

Taking a leadership attitude provides an example to others who may be struggling with their chronic illness. You may learn about their disease, and you may not, but people will see that you are taking control of your life. It may provide them with the strength they need to manage all that’s going on. 

When to Follow

You may prefer to follow, or at the very least, “not lead.”

But for some of us, myself included, the idea of following is like nails on a chalkboard. I’ve gotten better through experience to stand aside and let others guide. When it comes to my own life, I prefer to be the driving force

Of course, it should be this way. Still, there are times when I must take a backseat, even in my own life. 

I am about to contradict myself in the same post: we know what’s best, but sometimes we don’t. We may fundamentally understand what we need, but we refuse to follow it. There are times where we must listen to others to care for ourselves. We must follow their advice and suggestions because we aren’t honoring our needs. 

When we step aside and let others lead, it can be humbling. It can be humiliating. It can also give us a break from decision-making. Still, it’s vital to know how to balance leading and following. Don’t let someone take over all the decisions, especially if they are ill-equipped for the role. 

In a nutshell, know when to take control and when to accept help.

Leading and Responsibility

If you are a leader, whether you asked for it or not, you have a responsibility. While I will explore this concept in more depth on Wednesday, I wanted to take a moment to speak to it now.

The moment you reveal your diagnosis in a public manner, you become a leader and “go-to” advocate for your disease. Remember all the times you approached someone who had experience with something you were curious about? Unwittingly, you made that person your “go-to” resource for information. 

It is the same for you now. People will message you with questions, not necessarily to be nosy, but because they might be experiencing symptoms. Each time they search online, the sites point to your disease. You become the de facto expert.

Because of this, you have the following responsibilities. I will examine this list further on Wednesday.

  1. Clarify that you are not an expert and that you can only speak to your experience.
  2. Provide correct and objective information.
  3. Give an honest account of your experience. 
  4. Answer questions, no matter how poorly worded, with compassion. 
    1. To clarify: people may ask questions crudely and offend you with the wording or implications made. Assume it is unintentional (otherwise will stress you out). Re-frame your response to reflect an “askee” who is scared and does not understand how they are coming across.
  5. While you may be a perceived leader, you do not owe answers to anyone. Feel free to decline to answer invasive questions. 

Sometimes we intend to become leaders, and sometimes we stumble into it. Become a leader in your life with your chronic illness.


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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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But I Can’t Ask for Help

Have you found yourself in the position where you need help, want to ask for help, but found you are unable to ask? You may even say to yourself, “I want to ask for help, but I just can’t.”

Something stops you from asking. You may know why, and you may not. Often, I am too afraid to ask because I don’t want to take advantage. Other times, I inexplicably cannot bring myself to ask. There’s just a mental block that prevents me from turning to a friend or loved one and saying, “I need help.” They have to drag it out of me.

I am telling you if you are unable to ask for help, you are not alone.

Chronic Illness: The Ultimate Roadblock

Depending on your chronic illness, you may physically be incapable of asking for help. People with Multiple Sclerosis can sometimes have a lesion that affects a part of the brain responsible for managing your mood. One of the earliest symptoms of MS for Karine Mather was anxiety and depression.

Both of these mental health concerns are linked to MS, and both can cause a person to struggle to ask for help when they need it most

MS, and maybe your chronic illness, can create a situation where you logically know you need to ask for help, but you can’t bring yourself to do it. It’s scary when this happens. It’s also incredibly frustrating.

So how do you manage to ask for help when your illness creates the ultimate roadblock?

Finding a Workaround

Sometimes what stops us from requesting help is the physical act of asking. I feel so emotional when I use my voice because often, my voice and emotions will betray my level of need. While I am not required to “be strong,” for anyone, sometimes it opens up a more in-depth discussion. Most of the time, I am not prepared to have this conversation. I need help accomplishing a task, and I don’t want to examine all the emotional baggage I am feeling behind needing to accomplish the task.

So, the best workaround I’ve come up with to date is using technology.

While texting is evolving to include emotion (emojis, memes, and case changes), it is still a relatively emotionless medium. Take advantage of it. Texting or emailing someone allows you to remove all emotion from asking for help and will enable you to ask exactly how you want.

Consider reframing your requests, so it isn’t asking for help. Recently, I was tasked with developing volunteer roles. I needed to write up role requirements, and afraid of looking foolish, I wasn’t sure how to ask for help in starting the process. Rather than directly requesting support, I asked for an example role write-up so I could understand the parameters. It allowed me to ask for help without actually asking.

Reframing is an excellent tool because it allows you to get your request out in the open without compromising your beliefs.

Public Resources

If you are too afraid to ask people around you or have a limited support system, consider looking to public resources. Each “official” website related to a specific chronic illness has an extensive repository of information about the disease, how to manage it, and where to seek help. For example: the National MS Society has a huge section dedicated to resources and support.

You may also have government options available by way of social programs. But if you are like me, you may not be “bad” enough to receive any of these public benefits. Note: I am okay with that for myself. 

If you don’t qualify for a public program, there might be a private program available to get you the help you need. Plenty of people touched by your chronic illness donate to private organizations that can provide the resources you might need at the moment.

Additionally, these sites can have trained volunteers who can chat online or over the phone with any questions you might have. While they cannot answer specific medical questions, they can provide you with resources and a direction to head in with your research. If you get stuck on something, asking a faceless stranger over the internet can be more comfortable.

Look to your healthcare team. If the team isn’t able to, or unwilling to, ask for a referral to another professional. You want someone willing to answer your questions, no matter how illogical or random they may be. The advantage of modern technology is that you can speak to someone online. So if you are in a remote area, or have limited options for specialists, consider finding one online if your insurance will allow it. Note: this is not an endorsement of Live Health Online, I am linking them purely as an example.

Make it Gig

We live in the era of the gig economy, so if you can afford it, consider using it to your advantage. You have sites and apps that can bring you stylists, handypeople, groceries, and take you where you need to go. You don’t have to put friends and family out if you are willing to pay the fee. 

Unfortunately, this means it will add up, but it allows you to “ask” for help. For some of us, it is easier to pay someone than feel like putting a friend out.

Don’t Go it Alone

Having a chronic illness is isolating. Being afraid to ask for help when you need it can further isolate you, but you don’t have to be alone. There are plenty of people in a similar position to you. Look to online support groups to see how others handle their disease.

While chronic illness affects everyone differently, we can find similar symptoms and experiences out there. People who have gone through it found what works, and shared their findings online. It’s what I try to do. Just know that your mileage may vary. You have a better starting point rather than reinventing the wheel.

Find a healthy online space where people strive to uplift each other, rather than remain in a negative mindset regarding the disease. Venting has a place for your mental health, but wallowing does not. Post your story when you are comfortable. Read and engage with the responses given. Plenty of people want to help you, even if they’ve never met you.

If you can’t directly ask for help, find all the passive ways in which you can ask. There are so many opportunities available to you with the advent of technology. You don’t have to be alone in your illness, even if it tries to isolate you.


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Finding Your Strength

It’s time to ask for help. How do you do it? How do you find your strength to put yourself in the vulnerable position of asking others to help you? For some of us, when we reach a point of needing help, it feels like rock bottom. Like we’ve exhausted all of our options, and so we must look elsewhere to move forward. It can be emotionally draining.

But it isn’t a rock bottom, and we aren’t hopeless if we acknowledge we need help. We aren’t defeated, we are strong, and we will get through it with others.

We must find our strength to ask and to receive help.

Finding Your Strength in Connections

How do you find your strength to ask for help?

Often, we don’t want to acknowledge that we need to ask for help, yet every human needs a hand at some point. When you ask for help, you grow stronger. Your connections deepen, you might now understand a concept better, and you might get that boost you’ve needed to get ahead.

The struggle comes when you reach out and realize the extent of your social connections. Often we give to others, not necessarily expecting reciprocation. Still, when we need help, those same people are unavailable to help. I can’t count how many times I’ve put myself out only to have the friend ghost me when I need them

It’s discouraging and can interfere with asking for help. So, rather than thinking you can do it on your own, continue to reach out. If you get a lackluster response, remember that your friend might legitimately be unable to help you at the moment. If you suspect it’s because they are a taker, then you grow stronger, knowing the nature of your friendship. You can put them down your friendship mountain, and minimize the stress they caused in your life (hopefully guilt-free).

You want to surround yourself with friends and family who want to help make you stronger. Listen to you when you need them, and accept your help when you can give it. Don’t base relationships on reciprocity alone, but you want to know that it’s there when needed.

If you surround yourself with reliable connections, you may never need them for help. Still, it will make asking a little easier. It’s a good thing for your physical and mental health to surround yourself with positive people.

Help Me, Help You

The best way to get help from others is by providing them with efficient tools to help you. Figure out the best ways a person can help before asking. If you have a demonstrative and sensitive friend, they might be the best person to turn to for a good cry. If you have an emotionally distant friend who copes through humor, go to them when you need cheering up.

Play to your friends’ strengths.

Sometimes we know automatically what our friends can handle. If we are at a loss, ask them how they can help. Sometimes our sensitive friend is better as a chauffeur than a confidant. When you take your friends’ abilities into account when you ask for help, you respect their boundaries. You also minimize rejection or feelings of discomfort because you are sensitive to their strengths.

People want to help each other, but we also want to respect what they are comfortable doing.

Putting it into Perspective

When you find your strength, remember to maintain perspective. It’s hard to step outside of our chronic illness to recognize that someone else might be going through an equally tough time. While it may not be your responsibility to take care of someone else, you do want to be sensitive to what’s going on in their lives.

If I know a friend is going through a rough period and I am in need of some help, I will either turn to someone else or find a way to make the least amount of fuss. Often, I will make jokes about my own life to cheer them up, and in doing so, it helps me feel better. The help I need most often is a connection, and a friend can help me without even realizing it.

A friend may not tell me when they are going through a rough patch, so when they reject helping me, I try to remember my own experiences. I’ve had people need me while I’m coping with a minor exacerbation, and I’ve had to say “no,” to help them. I feel bad about rejecting them because I often feel like I could have helped anyway. But the point of saying “no,” was for self-care reasons. The same could be for a friend: they may be saying “no,” for their health. It is essential to respect that.

Remember that everyone is going through their mess of stuff, so when people behave a particular way, it has nothing to do with you. Take connections at face-value and don’t read into their reasonings, unless you know what’s going on for sure. You grow your strength from being resilient when friends can help you and the times they can’t.

We are all going through this journey together, so look to each other as opportunities to grow and mature by helping each other. You never know who might need that strength you model by asking for help.


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