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Reaching Out to Others

I struggle to ask for help. Ash will tell you that he has to drag it out of me when he knows I am struggling. I will get frustrated in those moments and give into his offers for help. Here’s how bad I am: when I was pregnant with Jai, I refused to ask for help even when I needed it. I had something to prove, mainly to myself, that I wasn’t helpless. While being independent isn’t a bad thing, learning to be okay with reaching out to others is equally important.

It’s humbling when I admit I need help. It feels like a weakness when I do. I am not imagining it either, American culture does not encourage asking for help. With the reemergence of the “bootstrap” narrative, it can lead us to feel awkward when we want to ask for help. Individually, Americans are happy to help those around them. But looking on a broader scale, Americans tend to prop up those who find success with minimal help.

This can lead to the rest of us feeling judged anytime we need to get help.

It would be nice to do everything on our own, but with a chronic illness, that’s often impossible.

Chronic Illness & Asking for Help

Having a chronic illness means we will need to ask for help at some point. It may be from family, friends, or healthcare providers. When we ask for help, we are performing an act of self-care.

But getting to the point where we can ask for help is the trick. Often, we’re dealing with an invisible illness. When we reach out for help, and we know we don’t look/act sick, it can feel like we’re being unreasonable. For myself, I feel like I am taking advantage.

If I need help from anyone, I will bumble out justifications why I need the help. I often feel like others won’t understand, or I need to remind them that I have a chronic illness. At times, I feel like I manage my MS so well, that others forget I even have it. So when I need help, I am coming from a place of “they will think I am taking advantage of them,” or “they will think I don’t really need the help.”

I recognize that I am being unfair to others when I take this attitude. I am not trusting that they will understand or that they don’t remember. People remember I have MS when I tell them. It also comes from a space of not believing others when they say, “let me help you.”

Learning to be “Okay” with Help

It is okay to ask for help. For the most part, you know what you are capable of doing. So when there comes a time where you need to reach out to others, do it.

But if you ask for help, show appreciation for whatever help you receive. I have helped others, and sometimes I receive an insult in place of gratitude. You may find it’s a similar situation when you ask for help: you feel vulnerable, and when you do, you may be slow to express your gratitude. But you want to preserve your friendship and be able to ask those people for help again.

Be sure to express your appreciation. Be okay with asking for help. Work on releasing any feelings of vulnerability and look at getting help as a sign of your inner strength.

You Are Not Alone

Coping with a chronic illness is a lonely affair. Your symptoms, your struggles, your victories, they are all internal fights for the most part. These battles become hidden from the outside world. It makes dealing with a chronic illness one of the loneliest journeys you’ll make in your life.

But you are not alone.

There are support groups out there relating to your illness, online and in-person. If you are uncomfortable with the support group dynamic, you can always read blogs and lurk in forums. You can find connections out there and similar stories/struggles to your situation.

The more you reach into these safe spaces for your illness, the more comfortable you should become in recognizing that there is normalcy with your disease. When you normalize your experience, it should be easier to reach out to others to help you. You see that getting help is part of the disease and there’s no shame in doing that.

Help Others Help You

In September, I reflected on the need some people have to help you cope with your illness. You can always say “no” to their help, but sometimes they are insistent, and you do need them.

To be clear, you are under no obligation to allow people to help you if you don’t want it. But sometimes it is easier to give in to the insistence and let them help.

In these scenarios, have a pre-set list of things you are willing to receive help on. It may be driving you to appointments, meeting for social interactions over coffee/tea, or dropping a pre-made meal off. By having an “okay” list to draw from, you won’t compromise your values, and you won’t be left struggling to find something for your friend to do.

It’s hard to accept help from others, but we cannot pretend we are an island. Sometimes it’s essential to reach out to others and let them help us cope with our chronic illness.


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Who is to Blame?

After getting a chronic illness diagnosis, there is a flood of emotions and thoughts for the first couple of weeks. One significant feeling is strange relief in finally having an answer depending on the length of your search. But what follows behind is the dark cloud of, “why me?” It’s tempting to blame your higher power for your illness.

To a certain extent, externalizing the blame can be healthy because often it isn’t our fault we got sick. The source of many autoimmune diseases is nebulous or entirely out of our control.

When you blame your higher power, you run the risk of negatively impacting your faith or misplacing it all together. If your higher power is a stable source of comfort and you feel betrayed by them, then the internal conflict that arises can be destabilizing.

The Chronic Illness Crisis

Chronic illness creates a rift in so many different parts of your life. It can negatively impact your intimate, professional, or higher power relationships. There is an existential crisis that occurs when you get your diagnosis. So many overwhelming emotions and very little room to navigate through them. 

When you get into a place where the dust settles, you may be left wondering, especially if you have a belief system, why it is happening to you. How did this happen? Why did this happen? What did I do to deserve this illness?

If you speak with your higher power and hear silence, it can feel particularly frustrating. Often, we are taught to believe that they will be there for us, comfort us, and protect us. Or if you are taught that these sorts of things happen for a reason, it is natural to want to blame the higher power. Rarely do we find a good enough reason to be given a chronic illness.

More concerning, we may even feel to blame for the illness. That we get it because we aren’t following a particular path our higher power laid out for us. Even worse is if an outsider tells us that’s the case.

So did your higher power turn their back on you? And who is actually to blame?

Happenstance or Punishment?

Is your illness a coincidence, or was it some test/punishment put before you?

That’s a question only you can find the answer. I want to tell you that it is not a punishment, that your higher power had nothing to do with giving it to you or allowing it to happen, but that isn’t my place.

If it helps to view illness as a test, and that creates a healthy challenge for you to work towards overcoming, then do it. But if it brings you into a dark emotional place and causes a conflict with your higher power, look towards your options. Your higher power wants you to be healthy and find comfort in them. See what you can do to get back into that space.

When you blame your higher power, you place yourself in the role of victim, and that creates a negative emotional cycle that can spiral out of control. You are a victim of the illness, yes. But you don’t have to give in to the mentality which can lead you to feel stuck.

Who is Responsible for my Illness

Depending on your type of illness, no one.

I have plenty of spots in my life where I can say I am partially to blame for getting my MS. I didn’t get enough vitamin D growing up in New England. I got mononucleosis as a child. But what if I drank a cow’s worth of milk a day, never got mono and still got MS?

It’s pointless to blame myself because I genuinely have no clue why I got MS. I view it as the luck of the draw. If I spend time reflecting on the “shoulda done this,” I would drive myself crazy. I accepted I am not responsible for my illness.

I was deconverting around the time of my diagnosis, but I know precisely my response if I was still religious. It would be a back and forth between blaming my higher power for allowing it to happen and blaming myself for doing something that displeased my higher power. I wouldn’t consider the diagnosis as something that happens in life. I already had a lot of emotional pain with my higher power. I would have either gone to an even darker place emotionally or begun the process of deconverting to protect my mental health.

Yet, my higher power was not to blame for my diagnosis. When I was younger, I often thought of my higher power like a child that flicked bugs for their pleasure. I was a bug, and so they put negative lessons in my path to make me miserable. It wasn’t until I could look back and see what was really happening: I was experiencing the same sort of stuff everyone else did. I was not being singled out as I thought.

Maintain Your Source of Comfort

You need as many sources of comfort in your corner with a chronic illness. If you feel that you must blame your higher power for your chronic disease, consider finding a leader within your community to help you through the healing process. Make sure it is someone you trust, and remember they are fallible too. Their interpretations may not be healthy either, so you may need to search around for someone who provides you the comfort and answers you need.

Blaming your higher power will cause a rift in your relationship. If a relationship brings you comfort, then you want to maintain that connection. It will give you the emotional and mental strength you need for your flare-ups and treatments. Do what you need to do to repair that relationship so you can focus on your health.

If it helps, consider placing the blame where it belongs: circumstance. It’s a random confluence of events that led to your health getting to this point, not you or anything else. While it is a rather abstract thought, and sometimes that does not bring the same level of catharsis, it is healthier than blaming yourself or your higher power.


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Surrendering Control

As a child, I heard about the importance of surrendering control, especially how it pertained to a higher power. While I spoke a bit on Monday about the importance of giving up control, this post is for those of us who cannot stand the idea of giving up control. When I heard the words “surrender control” growing up, I found that I would internally shudder at the thought. The word “surrender” in this particular context still irritates me years later.

I still haven’t quite identified why I hated the thought of surrendering control, even as a child. I suspect it has something to do with the abject vulnerability that comes from giving up control. I saw that the moments I was most vulnerable, I was also treated as though I was weak. So any display of vulnerability was a display of weakness. Surrendering was the ultimate sign of weakness.

Additionally, growing up, you are beginning to assert your independence. Being told to give up control, just as you are starting to come into control of your own life, feels like so many steps backward. I learned to associate giving up control as infantilizing. I could not differentiate between the “positive” forms of giving up control like going with the flow, and the “negative,” which was micromanaging all aspects of my life.

And so I became a control freak.

How to Give Up Control when You Can’t

It’s all well and good to be told to give up control. It’s one of those “easier said than done” situations.

But when it comes time actually to try and give up control, it can be difficult. I think for those of us who need to be in control are keenly aware of how out of control the world is, so we cling to whatever means to maintain a sense of order. We find areas in our lives we can manage, and even if we manage it poorly, there is some stability in the belief we are in control. 

Humans are masters of deception. Especially self-deception.

So, how do you surrender control?

Not easily, and I wish I were joking about that. This would be one of those areas where, if we could snap our fingers and fix everything, we would do it. I thought if I reflected on it hard enough, it would happen.

But it doesn’t work that way. Giving up control isn’t just a thought-based exercise. It requires active participation. I was seeking for something else to take control from me, even though it wasn’t for it to take, nor was I willing actually to give it. I couldn’t expect anyone, or thing, to take control. 

I, and I alone, could give up the control in my life. But I am like an addict, and to be sure, control is addictive, and addicts struggle to give up their drug of choice. While micromanaging my life brought on only stress, frustration, and health problems, I was unwilling to give up my “drug.”

Once I realized that I was responsible for my own burden, that the only way I would regain control in my life is to let it go, was I able to make a choice needed in the situation.

Now, if you have a higher power, you might say this: my teachings tell me to give up control. Many allegories teach to give to your higher power. Yes, but make sure you are actively giving up control and not expecting your higher power to take control from you. This is the trap I fell into. Make them your focal point, but remember that only you can say “I am going to give up control in this area of my life.”

Often, meditating or praying to that higher power or the universe can give you the strength you need to do so, so keep that in mind as well.

But it really has to be your decision to let go. Acknowledge that you are not in complete control of your life, that you are going to go with the flow, and accept whatever life hands you as graciously as possible.

Clear Head; Healthy Decisions

Control freaks: do you find that your head gets so cluttered with all that you have to do? All that you have to remember? All that you didn’t do, and now you feel frustrated?

The advantage of surrendering control is that it gives you a clearer head. No longer do you have to think about all the parts of your life you need to manage. You get a chance to prioritize what you can control and what you can’t. It allows you to reflect on your life more objectively.

Remember when I talked about not having expectations and accepting everything? No longer do you place expectations on your higher power or life to take control from you (you’ve given it over freely), and therefore, you can accept anything that comes your way. Often we get so wrapped up in controlling everything that we miss out. We might miss an answer we were waiting for, or an opportunity we’ve been wanting because it does not fit into the framework we’ve set up for ourselves.

We can make healthier decisions when we are in an objective head space. We can see what we need when we need it, and why we need it when we aren’t so focused on the minutiae.

Deeper Connections

Seeking a deeper spiritual connection with your higher power, the universe, or life? I found that once I gave up control in my life, truly gave it up, I had a deeper spiritual connection to those around me and the world at large.

I used to get so focused on the minutiae, but each time I slowed down, took the time to relax and go with the flow, I felt more at ease with myself and my placement in the world.

I also find that my compassion deepens for others and myself. My resiliency increases, and I am more accepting of what happens to me and around me. I am more willing to stand up for myself where I never could before, and be selfish in healthy ways.

Once I gave up control, I felt freer and in control, rather than out of control like I assumed I would feel.

Taking the Right Amount of Responsibility

Just as a reminder, when you give up control, you are still responsible for what happens in your life. You might be waiting for an answer, so what happens between asking the question and receiving that answer is your responsibility. We sometimes use giving up control as an excuse to sit around and be inactive. Instead, we should continue to be proactive in our lives. Seek other answers while waiting for a specific one.

Sometimes we don’t get an answer, or it’s not the one we want, and that’s okay. Consider the timing wrong, and ask again later. Look at it as a roadblock, and find a way to adapt around it.

Whatever you do, when you surrender control, view it as a chance to be more free and active in your life.


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Belief, Positivity, and Chronic Illness

“Embrace the power of positive thinking!” We hear that all the time when we endure a health crisis, a rut, or embark on a wellness journey. We are told if we want to change our mindset or become healthier, we need to shift our thinking to be positive. It’s something I frequently promote on the blog. But that isn’t possible with a chronic illness. Sometimes we need a little extra help.

Can positive thinking help you manage your illness? What if you are feeling particularly low on positivity?

This is where a higher power or greater cause can step in to help. Belief comes from the same place in our brains, whether it’s religious or not. Having strong beliefs, no matter the source, helps us create a sense of community and support when we find others who are similar. Prayer or meditative practices can help quell darker emotions that arise in illness.

Depending on your perspective and your practices, it’s effortless to slip in positive thinking. You just have to use what you already know to work with you, rather than against you.

Positivity, Meditation, and Prayer

Nature works against us when we want to sit down and focus on the positive. Geared towards survival, we get caught in the negativity to help keep us safe. Yet, negative thinking causes so much mental and physical harm. We no longer need it to survive, yet it still follows us around.

Belief can help us ward off negative thoughts. If you have a higher power, you can engage in your practices to find comfort in the routine and tradition. If you don’t have a higher power, you can participate in relaxation/self-care exercises to help set your mind at ease.

Regardless of your background, when you want to start engaging in positive thinking, there are tools available to you. If you are religious, look into your texts, and any devotionals explicitly created for comfort. If you aren’t religious, there are a lot of secular and science-based books available to get you started.

Seek out someone more knowledgeable too: a leader in your community, life coach, or counselor. They can give you text, tools, and mantras equivalent to meditation or prayer.

Prayer, or self-reflection, help bring comfort to the practitioners. It can take the edge off of emotions, help you collect your thoughts, and self-soothe. Most importantly, it can give us a break we need to refocus our thoughts to be objective. While coping with a chronic illness, we sometimes sink into darkness and crisis. Prayer/meditation grants our brains the break we need to help see beyond the darkness.

If you have a higher power, you might hear them speak to you with words of comfort. If you don’t, you might gain a similar moment of peace while meditating. These practices serve as a wonderful means to distract us from our despair.

Is it Helpful?

Finding a sense of direction within your personal philosophy should always be helpful. Your belief system (of any kind) needs to bring you comfort, not additional stress. If you find that you aren’t getting the support you need, figure out what’s going on. You may need to re-examine your beliefs to see why it’s not fulfilling your needs.

When you are in a time of personal crisis, such as a diagnosis or exacerbation, you want something to draw your strength upon.

I found as I grew older that the philosophy I used as a child no longer worked or brought me comfort. It only brought anger and resentment. I needed to look elsewhere to draw support as I dealt with my MS and settled on one that I dabbled in since I was a teenager. It took me a long time to feel okay with this switch, but it was more important to care for my mental health than anything else.

If your philosophy works for you and brings you comfort, continue to find ways to keep it working for you. If not, then speak with someone objective: they might be able to healthfully redirect you to materials to help you reaffirm your beliefs. Examination and reflection is essential no matter your faith, or non-belief.

Keep trudging forward as you deal with your illness and continue to draw sources of strength close to you as a means of help.


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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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