Love & MS

This post was originally published in February 2018. I’ve updated it to include a follow up since the original publication.


We don’t get to choose whether or not we get MS, nor do we get to decide when we get that diagnosis. For some, it comes while in a relationship, and for others, it happens outside of one.

Either scenario forces the following self-reflectiondoes my partner stay with me? And, do I disclose my situation on a date? MS is challenging because it turns partners or potential partners into caretakers.

It fosters self-doubt after the diagnosisis my partner with me because they feel obligated? Do they resent having to care for me? Are they only interested in me because they have to “fix” me? What happens if they leave or die before me?

It is little wonder that many bloggers and experts refer to MS as the third wheel in a relationship. It’s an unwanted obstacle that can put a strain on any current or budding relationship.

The Third Wheel

MS is the unpredictable cousin that comes into your life and needs a place to crash until they get on their feet. They take up space on a centrally located couch and refuse to leave when you want to watch a movie with your partner (or bring a date home). They say they are looking for a job, but really spend all day watching half-hour courtroom shows with ads for injury lawyers.

It’s that cousin that interrupts you every time you want to have a conversation with someone. Because of the interruption, you forget what you were saying and get frustrated because you can’t remember.

Simply put: MS is an unwelcome third-party to your relationship that isn’t going to leave anytime soon. No matter how many times you ask it to get its act together and move on.

Trying to figure MS out and how it factors into a relationship is extremely hard. In addition to maintaining a relationship, I am trying to learn my limitations. How much do I put on or ask of Ash? Should I even ask him to help? Is the relationship lopsided? Am I really that bad that I need his help? Or am I just imagining things?

MS is always hiding in the background of every thought or action I take. I have to plan out my day to make sure I have enough energy for when Ash gets home to make any interactions with him meaningful. I have to pause frequently and ask myself: am I feeling this way because this is normal for someone who only got 4 hours of sleep with a teething toddler, or is this because of the MS?

As you can see, I ask myself a lot of questions. I tend to overthink things, and so it takes a lot of energy to manage my MS. So when it is time for quality time with Ash, sometimes I just don’t have what it takes to be the partner I think he deserves.

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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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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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Is it Weakness to Ask for Help?

Weak. Loser. Faking.

These words jumble around my head when I want to ask for help. I am afraid of appearing weak or taking advantage of others that I don’t ask for help even when I should. It’s hard to move beyond our thoughts, but when we do, we show our greatest strength. We acknowledge what we can handle and what we cannot. It’s is humbling asking for help, but it is a test of our character and the character of those around us.

Getting to that point of asking for help is hard. There’s a lot of cultural and personal baggage we must work through first.

Western Culture & the Weakness Narrative

My insecurity over asking for help does not come in a vacuum. Western culture, particularly in America, has a negative attitude for those who ask for help. If you have a chronic illness and need to go on disability or welfare, you know what I am saying. Drug testsnegative nicknames, and accusations of freeloading all make up the national narrative surrounding people who need to ask for public help.  

You can make the argument that these are examples of public help and not the same as asking those immediately around you. When the national discourse towards support is so hostile, it’s challenging to feel comfortable broaching the subject. Countless times I’ve wanted to start a conversation with an individual only to find their feelings on a particular matter do not align with mine, and they are rather passionate about it. It’s easier to stay silent than to open up.

This attitude against helping others is unrealistic and isn’t the truth. We often heard success stories and the individual thanks all of the people that helped them along the way. Mentors, networks, sheer luck all play a role in getting a person to meet their goals. 

But when we have an invisible illness and hear stories of discrimination, it is hard to want to reach out for help. Even if it’s getting a placard to park closer to a store because sometimes its easier to walk a bit farther than deal with notes, stares, or rude comments. 

If you live in America, as I cannot speak to other countries, it is a hostile environment to ask for help even if getting help is normal.

Internal Fears & Insecurities

Admittedly, much of what I just said has everything to do with personal insecurities. You may be lucky enough not to have a problem asking for help. But sometimes our illnesses tap into our insecurities by the very nature of the disease itself. We may not be able to control the feelings of uncertainty because the illness takes over.

But if you had insecurity over asking for help before your diagnosis, the chronic illness might exacerbate that insecurity. Now that I need help from others, I am more afraid to ask. I don’t look sick, I run frequently and act “normal,” so when I ask for help, I must be trying to take advantage?

These fears are unreasonable, and I completely acknowledge that, but I can’t stop them from popping into my head and preventing me from asking for help when I need it.

If we can ask for help, and do so with respect, then we won’t take advantage of others. You will probably flatter your friends when you ask because you’ve trusted them with a part of your life you may not show often. Think about the time others have asked you for help and how that makes you feel. You probably appreciate the opportunity to help someone you care about in some small way.

It shouldn’t be different when you are the one asking for help.

The Problem with Asking for Help

When we ask for help, there is a chance of rejection. What happens when we put ourselves out there, and we get rejected or a wishy-washy response? How do we handle that?

We also open ourselves up to criticism, comments, or unsolicited advice. How many times have you heard the “well, if you try this, my friend-of-a-friend-of-a-friend found it helped them?” When you need help, it’s an open door for those sorts of comments. 

Rejection and “well-meaning” comments bring feelings of shame, so we might pre-empt those feelings by not bothering to ask.

Remember this: only you can let yourself feel shame. Only you can make yourself feel weak. Regardless of the response, you can choose to let the comments bother you, or you can decide it’s not worth it. If there is a pattern of a friend or family member making you feel wrong with their comments, then perhaps it’s time to move them down your life mountain.

Breaking Free from the Mindset

Ultimately, we have to suck it up and ask others for help. It’s easy to say this given societal pressures against asking for help, but we have to put our health first. If you want to be a help to those closest to you, then you must take care of your needs first.

When you ask for help, you aren’t revealing weakness, but strength. You are putting your vulnerabilities out there and showing that you are self-aware enough to need help. Often, I find people respond favorably to me when I unapologetically show my vulnerability.

Only you can make yourself feel exposed. People might comment to help support those feelings, but you can reject them in the same way they are rejecting you.


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Is there Positive in an Exacerbation?

Ask yourself this: is there anything good that comes from a chronic illness exacerbation? The obvious answer is no. The hidden answer is yes.

Exacerbations do a number on our bodies and psyche. They are physical and mental setbacks that leave us feeling stuck in place until they are over. They can cause long-term damage or help progress our disease farther along.

Stating that an exacerbation can be “good” is unconscionable. As people coping with a chronic illness, we want to avoid them at all costs. Absolutely. But that isn’t always possible. I am aware that I could become a Zen Master and banish all the stress I feel in life, and still get hit by an MS exacerbation without warning. That is the very problem with a chronic illness: the unpredictability.

The key is to find a silver lining in the middle of each exacerbation as much as possible. There will be moments where maintaining optimism is near impossible, and that is fine. But in the moments we can find a ray of sunshine, we should embrace positivity.

The Frustration of an Exacerbation

Exacerbations slow us down. They can land us in the hospital for treatment, and they can leave us searching for more answers on how to best approach our treatment.

I hate exacerbations because of how much they set me back. Before I managed my MS, I would be in the middle of an important project, and an exacerbation would slow me down for several weeks while I recovered. My usual MS symptoms, like fatigue, often cause me to take a day “off,” while I recover in bed.

I often wonder if my body coordinates the timing of the exacerbation as a form of self-sabotage. I get ahead, and my exacerbations/symptoms pull me back.

There might be some truth to that conspiratorial belief. I am pushing myself so hard that I do not listen to my body, so my body has to get my attention. Fatigue, L’Hermmittes Sign are red flags that I am not taking care of myself.

And if I continue not to listen, the exacerbation comes along to stop me in my tracks and take a break. But by then, it’s usually too late, and I may not know the extent of the damage done by the flare-up.

Gratitude in the Lowest Moments

We know that exacerbations are annoying, we know that they can be damaging, so how can I find the positive in these adverse chronic illness events? What follows is what works for me, so your own experience may not reflect my own.

I learned that an exacerbation is an excellent opportunity to practice gratitude. Sometimes the flare-up affects my depression, so finding appreciation might be impossible. Literally, because the exacerbation is the source of a mental block. If this happens to you, try to remember not to feel discouraged because it is out of your control.

But in the moments where this isn’t the case, where the exacerbation impacts your body, where you can recognize what is going on, we can practice gratitude. This isn’t something you will be able to whip out on the first go, it will take practice. A lot of practice. Gratitude and positivity are hard to be the first thing we reach for in our lowest moments.

What would gratitude during an exacerbation look like?

Take time reflecting on the points I’ve listed below and try to find gratitude in at least one of them. If one of the points don’t fit or bring on further negative thoughts, move on, and find another aspect that can help.

When you find a point that works, take time to examine it thoroughly. Reflect on each part that you are grateful for, each positive experience you’ve had relating to it. This will serve as a healthy distraction from your exacerbation.

  • Your medical team. How quick are they to listen to you and respond to your needs?
  • Your support team. This might be your family, professional nurses/helpers, and beyond.
  • Your social network. Both online and offline. How well do they listen, respond to your needs, and help you through your tough times?
  • Your financial situation. Is it favorable or not? Do you have the means to care for yourself?
  • Your overall health outside of the exacerbation. What are you usually able to do and looking forward to once this resolves?
  • Your professional situation. Are you satisfied in your professional life, and do you find validation there? Are they supportive of your case?
  • Overall survival security. Do you have a home, food, ways to clothe and take care of yourself? Ability to get around, even if it’s less than ideal?

Hopefully, you’ll find plenty of things to be grateful for running for this list or have a starting point for your own gratitude list. It’s essential to find things you do have in your life, despite this low point, and focus on them as a means of distraction. The idea is to help uplift you until you recover.

Searching for Positive

I will acknowledge that it’s privileged to say that there can be a silver lining in almost every situation. Certain fundamental conditions need to be met before taking a step back and look for the positive. I am sure a number of my readers are in that position of privilege, but I won’t make a sweeping generalization.

That said, try and look for the positive even in the middle of your exacerbation. Finding the positive does feel futile at times, so don’t feel pressured if you can’t find it. There are going to be good moments, and there are going to be bad. When you first start off, there will be more bad moments until you get more practice.

The key is to retrain your brain to not focus on the negative, but be receptive of the positive. This will be an uphill battle, as our biology steers us towards the negative. We are no longer running from other apex predators when we walk in the woods, so take time to retrain the primitive brain.

Exacerbations, while overall, are not a positive experience, they can give us a chance to find the positive in our lives separate from the negative experience. They give us a chance to slow down, appreciate what we do have, and find a way to retrain our brains to focus on the positive aspects of life. It’s not ideal, it never is, but it’s one way to cope with an uncontrollable situation.


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