In Sickness and in Health
… “to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health”… when we said these words, I never in a million years would have thought that I would put the “in sickness” vow to the test less than five years into our marriage. At times, I am completely overcome by how unfair it is to my husband and my son that I am putting them through life with MS. I don’t have MS alone. My husband and my son have MS with me.
I have struggled to write this blog post, as it concerns the darkest and most twisty of my thoughts. I feel that I have become an enormous burden to my family. Feeling that I am a burden makes me completely miserable. I feel guilty that I need my family’s support.
I know that if the shoe was on the other foot and it was my husband who was sick, I would be his biggest supporter; so, in that sense, I completely understand why my husband is my biggest supporter. I know that I wouldn’t view my husband as a burden if he were sick; so, in that sense, I completely understand why he doesn’t think of me as a burden. But my dark and twisty thoughts still plague me. My inner dialogue regularly points out the burden that I have become. I do my best to silence this voice, but every time that I see someone with more advanced MS and every time that I fret over the disabilities waiting for me in my future, that inner dialogue comes screaming back into my life.
I’m not alone in this bullying self-thought. I recently organized a Zoom meeting with some other newly diagnosed members of my Facebook MS community, and bullying self-thought was a commonality between everyone participating in that call. One of the other members pointed out that, as women, we like to be the heart of our households, and feeling like we are burdening the rest of our household is about the worst feeling imaginable.
One of the funny things about this bullying self-talk, is that I then bully myself for having such negative self-talk. My husband has never done anything to make me feel like I am a burden. To the contrary, he has stressed that I am the most important person in his life and that he supports me no matter what the future may bring. He doesn’t feel trapped. He chooses to be with me through all of this. I know that it makes him feel badly to know that I think that I am burdening him. The result is that I bully myself for my inner thoughts making my husband feel badly.
As I am currently struggling with feelings of depression, I asked my neurologist to connect me with someone who can help. I am now meeting with the social worker at the MS Clinic, and I am working on finding a therapist who specializes in care for those with chronic diseases. At my first meeting with the social worker, she advised that I should engage in mindfulness. I was immediately annoyed. People have been trying to sell mindfulness to me for years. I just find the whole thing kind of flaky.
Dr. Boster (a neurologist that I follow on YouTube) also stresses the importance of mindfulness. He used to speak of the importance of being four for four in your fight against MS. The gist of which was: 1. Don’t smoke stuff; 2. Incorporate exercise as part of your lifestyle; 3. Take a Vitamin D supplement; and 4. Take the most effective disease modifying therapy (DMT) that you are comfortable with taking. I am currently meeting the first three criteria, and I should soon be meeting the fourth criteria too. I am just waiting to hear from the pharmacy on the availability of my DMT. However, Dr. Boster added a fifth criteria. He now calls it being five for five in your fight against MS. The fifth criteria is mindfulness. This elicits a groan from me every time he says it. I am not even close to meeting this criteria.
My personal view of mindfulness is that it is woo-woo. However, I am trying to re-evaluate my view. I am told that mindfulness is a state of non-judgmental awareness of one’s own thoughts and feelings. I am definitely aware of my thoughts and feelings, but I struggle with the non-judgmental part of the equation. Perhaps I am too judgmental for mindfulness. The social worker gave me a list of “thinking errors”. I can identify that I am guilty of “setting the bar too high” and “self-blaming” but labeling these as “thinking errors” hasn’t helped me to overcome my tendency to engage in these thought processes.
To quote Meredith Grey (yes, I still watch Grey’s Anatomy), “I go a little dark and twisty, but then I come back”. Today, I am thinking my dark thoughts, but I will pull myself back into the light, even if that means having to stop calling mindfulness woo-woo nonsense.
