assessing-chronic-illness

Assessing your Chronic Illness

Chronic illness takes many different paths. For some people, their illness takes over their lives, rendering them immobilized from disability. For others, it registers as a minor inconvenience where they can lead relatively “normal” lives. And there’s a chunk of people who fall somewhere in the middle. As we near the end of the year, it’s an excellent opportunity to assess our chronic illness objectively. As we look towards the new year, it allows us to enter 2020 with a fresh perspective about ourselves and our disease(s).

Often, we think we know where we fall in our chronic illness scale. Sometimes, our emotional mindset distorts the actual reality. I make this point as someone who fell into a trap believing I was worse than I was. It took several self-reflection sessions to realize I was not looking at my MS realistically.

Because I was unrealistic about my MS, I was not approaching my management effectively. I thought I couldn’t exercise, I couldn’t hold down work, and struggled for a time over becoming a mother. My distorted view of my abilities limited me for several years from achieving my personal goals.

Now, this isn’t the case for everyone. You may find that you do have a realistic grasp of your disease, and that’s an ideal place to be. You know what you need to do to manage it. However, if you haven’t taken the time to assess your illness and abilities, you may have some positive news after your reflection. You may find that you are more capable than you expected.

Assessing Your Wellness

There are times where we are painfully aware of our abilities and limitations. If diagnosed with an extreme form of your chronic illness, like Primary-Progressive or Secondary-Progressive MS, then there is a physical limit to your abilities. There is a clear delineation between what can and cannot be done.

But the majority of the people diagnosed with MS are initially diagnosed with RRMS, around 85%, which is a “milder” form of the disease. There is a range between those who barely feel their MS to those who undiagnosed PPMS or SPMS. And because of this range, it’s hard to be sure of our capabilities. While it might be tempting to do, we should never compare ourselves to others as the manifestation of the disease changes from person-to-person.

Easy to say but hard to do when it’s in our nature to measure ourselves by others. When you have celebrities out there publicly displaying the most extreme aspects of their MS, without providing any context (if they have RRMS, PPMS, or SPMS), it’s hard not to wonder: will that be me someday? Will I need an extreme form of drug therapy? Will I have to shave my head? Will I lose my voice? Will I need an expensive mobility scooter?

How bad will my chronic illness get, and should I be more cautious in how I live to avoid progressing the disease along?

Chances are, you won’t follow the same path as these celebrities, at least not right away. But ask yourself this: is the mental image of my disease, in its current state, matching reality? Am I making decisions on my condition based on what I see others doing, and not what I am capable of doing? Have I removed myself from the equation altogether and not effectively treating my disease?

To restate: do we fall into the trap of pre-maturely disabling ourselves because we have a distorted view of our illness?

I did. For years after getting my diagnosis, I assumed I would be permanently disabled by the time I hit forty. I started to act like I was on the path of disability, discouraging myself from actively treating my disease beyond medication. I had the attitude of “why bother?” for a lot of things in my life. If I had eight more quality years, why commit to something that would take ten years? 

It wasn’t until I committed to becoming a mother did I start to assess my abilities honestly. It took months after Jai’s birth for me to realize my perspective about my illness did not match reality. While I still deal with fatigue, I was not fast-tracked to immobility by forty as I thought. When I realized this was the case, I saw the limitations I kept experiencing surrounding my MS wasn’t from the disease but from me.

It was rather liberating when I came to this realization.

Going into the New Year with a Chronic Illness

Taking the time to assess your chronic illness provides you with the tools to decide how you want to approach the new year. If you’ve wanted to make some goals for yourself, but felt discouraged over whether you can do it or not, take time to assess and test yourself. 

For example, you may accurately assess that you cannot walk very far due to mobility issues. But you’ve always had a goal to walk a mile a day and were reasonably concerned about achieving said goal. Be adaptive, set the goal, and safely work yourself up to walking a mile a day. There will be days where you can achieve your mini-goals and days where you should honor your limitations. It may take you all year to work up to that mile, but what will you learn about yourself in that time?

Two things you will hopefully learn in the year: one, that you aren’t as limited by your illness as you thought. Two, you are more resilient than you might previously give yourself credit. Goals, if they are worth it to you, take time. Try not to feel discouraged if you find it takes longer than expected to reach your goal.

If you assessed your abilities and found yourself more capable than previously thought, like me, then take time to set goals and find your true limitations (in a healthy manner). Honor what your medical professional says, follow their guidelines, and work to break free of any mental blocks you’ve placed on yourself.

You may find that you are better managing your illness because you are allowing yourself to be more aware of what you can and cannot do. The benefits of goal-setting and working towards those goals are numerous and worth doing. 

The key is to take a chance and figure out where you stand in your illness and deciding if you are honest with yourself. Once you’ve done so, you never know what you can achieve in the new year.


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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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Turning It Over

I struggle with letting go of control. Ash will tell you this should you ask him. When I get into a micro-managing state, it’s one of the quickest ways for me to experience an exacerbation. When I feel out of control, I tighten my grip to control everything around me, and then I stress out because I feel out of control. While I haven’t had a significant exacerbation in several years, my brain fog, L’Hermittes Sign, and neck twinges when I start down the path of stressing out. 

I’ve learned I have had to say to myself, “I can’t control everything, so I need to stop,” and attempt to go with the flow no matter what direction that might take. But I can slip back into bad habits of wanting to control everything and then I start stressing out again.

It’s a vicious cycle.

And usually feeling out of control helps bring that about. I’ve learned that I cannot control everything, and for the most part I do well to go with the flow of everything, but then I slip back into bad habits of wanting to control everything around me and then I get back into that space of feeling out of control and stressed.

It’s a vicious cycle.

When we have a particular life philosophy, we are often told to let go and give up control. And there’s something to that – it’s just got to be done in a healthy and reasonable manner. I have found what works for me, and so it’s important that you find what works for you.

I’ve learned I have had to say to myself, “I can’t control everything, so I need to stop,” and attempt to go with the flow no matter what direction that might take. But I can slip back into bad habits of wanting to control everything, and then I start stressing out again.

Depending on your life philosophy, or belief system, we are often told the importance of giving up control. That may be to a higher power, the universe, or just in general. That’s solid advice no matter your background: recognizing what you can control, what you can’t, and letting go of what you can’t.

When we have a particular life philosophy, we are often told to let go and give up control. And there’s something to that – it’s just got to be done in a healthy and reasonable manner. I have found what works for me, and so it’s important that you find what works for you.

Letting Go of Our Worries

If you have a higher power, you are at an advantage to someone who does not, because many belief systems teach the importance of giving up control to a higher power. If you don’t have a particular belief system, you have to remind yourself not to be so controlling and go with the flow. It’s a built-in reminder that those without a higher power do not have. But if you don’t have a higher power, that’s fine, you just have to remember to say, “it’s okay, I don’t need to control everything.”

Struggle with giving up control? Well, if you have a belief system, seek out direct texts that teach you to give up control. If you can’t find anything there that speaks to you, seek out secondary books, usually written by scholars, that might speak to the matter.

If you don’t have a belief system, consider mindfulness techniques to bring you back to the present moment. When you focus on the present, the moment you are in now, you cannot try to control everything around you. Center yourself at the moment and find ways to let go of the control you are fighting to hold. Look to your health as a starting point: I must let go of control to better tend to my health.

Finding the Balance

This brings up the question: who is responsible for our lives? Us? Our Higher Power? The Universe? Something else?

That’s an answer only you can decide. I cannot tell you, nor can I presume to suggest the correct answer. What I can do is tell you what worked for me, but that does not mean it will work for you.

For myself, I gave up personal responsibility when I had a specific higher power. I gave that higher power responsibility for my life, my happiness, and at times, my actions. I gave up too much control to this higher power. They were not responsible for my specific actions or responses to a situation, though I said they were as a means of absolving bad behaviors.

When I took responsibility for my actions and reactions to situations, I found a more profound peace within myself because I was able to feel more in control of my life. Even though things happened to me, outside of my control, I recognized that my response to those things was something I could control. It was about finding a balance between what I could control and what I could give up.

Figure out the balance in your own life: what responsibility can you take on for yourself, and what control you can let go. When you recognize that there are elements in life beyond your control, such as your chronic illness, you can start to lower your stress.

Acceptance of What We Cannot Change

Another advantage people with a higher power have over those who do not have one, is it allows for recognition for what cannot be changed and force us to move forward. Without a higher power, there needs to be a reminder to move forward in life, despite the roadblocks. People can place their trust in the higher power to see them through and take comfort in that.

Without a higher power, we must seek comfort elsewhere. We must trust that life will guide us through the process and that a coincidence will pop up to allow us to move forward or find an alternative. Often, life provides us with this when we aren’t expecting it. So remember to expect nothing, but accept everything to embrace an opportunity when it arises.

Moving Forward

It’s not easy to give up control, whether to a higher power or just in general. It’s never going to be easy, no matter how often we might need to do it. Why? Because control allows us to feel empowered. When we give up control, we lose a sense of power.

But if we want to move forward in life, if we’re going to begin to heal the emotional wounds caused by a chronic illness, we must give up control over things we cannot control. Whether that is to your higher power or to something else, when you give up control, you begin the process to move forward in life.

Life moves us in a forward momentum whether we like it or not, we might as well accept that movement and find ways to work with it, rather than against it.


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The Power of Others

When dealing with a chronic illness, it is sometimes our deepest desire to enlist the help of others. We might be too afraid to ask on the surface, but unconsciously we desire connection to others, especially when we feel alone. Often people want to help us, but can’t or don’t know how best to do so. Sometimes the best thing they can do is pray or send positive thoughts our way.

Is the concept of “thoughts and prayers” actually helpful? Or is it something we say to each other, and accept on our behalf as low-effort?

I think it boils down to your perspective. If you are a glass-half-full person, then having someone pray or reflect on you is helpful. If you are a glass-half-empty person, then it might be a hollow offer.

How can others help you through your health crisis? If you are new to my blog, please review this month’s disclaimer before reading any further.

The Power of Prayer (or Positive Thoughts)

As a teenager, I remember sitting and listening to my religious leader “cite” a study on the effect of prayer for those in crisis. I use quotes not to disparage, but because the leader was extremely vague about the study, the details, and did not provide resources to find the study on our own.

Reflecting back, I believe they were referring to Dr. Randolph C. Byrd’s 1988 study, “Positive therapeutic effects of intercessory prayer in a coronary care unit population.” The study found that participants who received intercessory prayer fared better in their follow-up appointments than those in the control group, who received no prayer at all.

Unfortunately, subsequent studies found that Dr. Byrd’s 1988 study to be at best flawed, and at worse irresponsible. Relying on prayer, regardless of the religion, to heal a patient can prevent the patient from receiving the necessary medical intervention needed to help with the illness. Each study that comes out relating to prayer and health finds little correlation between prayer and improvement of health.

Here comes the “but…”

While prayer itself may not change the outcome of a medical diagnosis, there is something behind knowing that others are thinking about you. It may not improve your health, but do you feel comfort when you know others tell you they are thinking/praying about you?

Unfortunately, I ran into a bunch of dead-ends in my research for this post surrounding the benefits of having others think about you. Current trends are to not worrying about what others think, and focusing solely on self-care. Both of these are positive in its own right, but it doesn’t answer the question: what are the benefits knowing others are thinking about us?

What I am about to say is speculative and unscientific: I believe knowing others think about you, whether it’s via prayers or positive thoughts, provides comfort. It allows those of us with a chronic illness to know we aren’t alone. Others may not know our experience, we may be alone (mentally) in our disease, but when others care for us to spend a few moments out of their day to reflect on our journey, it means a lot.

Going Beyond “Thoughts and Prayers”

If you are reading this as a friend or family member of someone with a chronic illness, there are some things you can do to stretch out your “thoughts and prayers” for them.

Use the time you reflect on them and find ways you can help. Sometimes, when we say we’re thinking about someone, it’s the most we can do. That’s fine, but consider doing something in their honor.

What You Can Do to Help

  1. If the person is dealing with a massive health crisis, consider getting yourself screened. For example, if they have cancer, try to get tested for that particular form of cancer. Or, get yourself screened as a potential donor for them or in general.
  2. Learn all you can about their health crisis and be better prepared for how to engage with the patient. In your research, find out what other patients say about the “dos and don’ts” in conversations.
  3. Donate money in the person’s honor towards research for their illness.
  4. Share across social media the latest information and research on the illness, but make sure to get their consent before tagging them.
  5. If you can physically help the person, take them to appointments or for a social outing of their choosing.

There are many other ways you can help someone with a chronic illness to extend the efficacy of thinking about them. You just have to find what works best for you and them.

Powerlessness and Control

Often, those in our lives feel powerless when we get a chronic illness diagnosis. They stand beside us, hold our hand, and do everything to help us manage our illness and still feel like they can do more.

Prayer or reflecting on us is an additional way to feel like they are helping. It’s calling on a higher power or the universe to intercede on our behalf. While the answer may never come, or be positive, it’s yet another way for our friends and family to feel in control in an out of control situation.

Sometimes saying “I will pray/keep you in my thoughts,” is enough to empower the person to go beyond the statement and spring into action.

When faced with powerlessness, the smallest action can help someone regain a sense of control. Next time someone says, “I am thinking about you,” think not of it as a common thing we say when there’s nothing to say, but rather a way of providing comfort at the moment.


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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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