Unlisted: Self-Reflection & the Chronic Illness

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Learning to live with a chronic illness is frustrating. Asking someone to reflect on living with a chronic illness seems insensitive. I mean, after all, some days its all we can think about when our muscles seize up or we can’t get out of bed.

The last thing I want to think about is my Multiple Sclerosis. But if I want to manage my MS, I have to review how I handle it.

Coping with a chronic illness is a struggle. A struggle that sometimes requires therapy and a whole team of medical specialists. How do you know you’re getting the care you need for your mental and physical health? Self-reflection.

Reflecting on your needs, what you truly need to manage your illness, helps take control of your care. Prior to each neurology appointment, I spend a few moments to figure out what I want to discuss. I write these points down and ask Ash if I am missing anything important. From there I reflect on potential questions the neurologist will ask and how I plan to respond (to either plan further care or discontinue my options).

Self-reflection brought me to a place where I decided how I manage my stress, fitness, and eating habits. Taking a holistic approach to my care to complement my neurologist’s recommendations, helps me manage my MS. I am in complete control of my care because I knew what I wanted to do for myself.

At-Home Therapy

If you are in therapy right now, stay if it’s helping. I will never suggest replacing your therapist by doing mental/emotional work on your own.

If you need to see someone, then you should absolutely go see someone.

When in therapy, or in a space where seeing them as often as needed, consider using self-reflection as a complementary therapy. It will never be as good as professionally guided work, but it may augment the work you want to do but don’t have enough time to do in each session.

I had to do a lot of at-home work when I was first dealing with my diagnosis. I was in therapy, but the therapist was less effective than I needed. I did gain important coping tools from them, but I found that most of the heavy lifting was done outside their office and they were generally unsupportive.

It took a moment of self-reflection to realize that my chronic illness needs were not being met. I had to leave my therapist and seek a new one. With my current therapist, I find most of the work is done in the office and any work I do outside the session helps make the next one more effective.

Honesty about Abilities

MS, and any chronic illness, requires absolute honesty with ourselves. Unfortunately, immediately after a diagnosis there’s a desire to run away from our truth.

I wanted to give up immediately after the diagnosis. I cycled through so many negative emotions and thoughts it made my head spin. I see people in MS support groups talking about various forms of giving up. Some posts are venting of emotions, while others take a much darker tone and meaning.

I cannot tell them what the right thing to do in those moments because the right thing shifts from situation-to-situation and person-to-person. That moment of venting online may come from the poster knowing they need to grieve and connect with others over that grief. In those moments, they are being honest with themselves.

Feeling bad for yourself has a place in the grieving process, but because it’s a process, there needs to be forward momentum.

I do not know what is going on in a person’s life when they are venting about their chronic illness in their life, but I do wonder if they are being honest with themselves about what they can do to adjust their situation. If a person with MS can’t walk with no possibility to rehabilitate and so they complain about it to the support group, it’s clear they are being honest about their abilities and grieving for it.

But sometimes I see a person complaining about an unsupportive partner and their post history indicates a pattern of blaming everyone around them, I ask myself if they are being honest with themselves and us about their situation. It feels in these moments that the person is desiring to be stagnant in their life and how they manage their disease.

To clarify: these are people who only complain about their life, reject any effort for help or support, and blame everyone for what is happening. I am discussing the difference between venting for cathartic release and dwelling in negativity for vast stretches of time.

I’ve chatted with Ash about these sorts of scenarios and his perspective grounds me: don’t read into what strangers say, your job isn’t to judge what they reveal to you beyond the surface. Your job is to take them at face value despite their history and go from there. People change moment-to-moment.

Using Self-Reflection as Self-Care

As stated in Wednesday’s post, self-reflection will provide insight into what you need to do for personal success. Incorporate what you know about your illness to your self-reflection and see where the answers lead.

If you were like me at the beginning of your diagnosis and refuse to learn much about your illness, be honest about that fact. Either incorporate your lack of information to your reflection, or make an effort to learn more so you can make an informed decision about your care.

I recommend eventually getting to a place where you learn more about your illness for your own sake, but I say that knowing it took me three years to get to that point.

How this helps you succeed

In my situation, I know that I can’t do quality writing work past 1pm. This limits me to six, interrupted hours of my best writing time. Having a toddler at home means that I can’t get into a groove because he might need my attention at a moment’s notice.

Therefore, I calculate at least two hours of writing time throughout the morning, basically taking what I can get between interruptions. If there is something else I want to get done, I know to schedule it in the morning when my energy levels are at their highest.

I don’t shut down at 1 pm, but I know that my productivity drops so much that if I don’t complete the task scheduled in the afternoon, it’s okay. In these moments I may let Jai watch a movie or an educational show if he is unable to nap because I need to rest. Again, I’ve learned to be okay with that.

I was honest with myself, my time, the impact of my illness, and my abilities. Schedule important stuff in the morning, less important stuff in the afternoon, and I will succeed in getting the things I want to get done – done. Because I did this, I find I am less stressed and feel more productive by the end of the day.

Take a few moments and ask yourself some important questions about your illness and how it impacts your ability to succeed:

  • Does my illness impact my energy levels?
  • When are my highest energy level periods?
  • Does my illness impact my mobility?
  • What mobility do I have and what can I accomplish with that?
  • What other ways does my illness impact my life?
  • What are some of the ways I adapted (or can adapt) around my illness?
  • Do I need to create a set schedule to make sure everything gets done in a day/week?
  • Do I need outside support to help me achieve my goals?
  • How/Do I need to compromise/adapt in order to achieve my goals?
  • What is the emotional/physical/mental toll of my illness and how does that impact my desire to get things done?

You may find that in answering these questions you answer/ask additional questions you didn’t know you had. Trust yourself in those moments because you may be trying to tell yourself something or ask a question you want answered about yourself.

The hope is that you will get into a similar space of acceptance of the chronic illness, but with the preliminary ways to help manage it. As you go along you will find what you started doing to achieve your personal goals no longer works, so you’ll be open to making the necessary adaptations.

You may also surprise yourself at what you are capable of doing as well.
After self-reflection, you may realize that it is possible to achieve a specific goal it just may not be in the time frame you originally wanted. That’s the beauty of honest self-reflection: you may surprise yourself.

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Featured Photo Credit: Mohammad Danish from Pexels

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