Sometimes I Feel Guilty for Having MS

By Alene Brennan

Living with a chronic illness is not easy. Living with an invisible disease is not easy. Living with an unpredictable disease is not easy.

Living with MS is hard.

To add insult to injury, I sometimes feel guilty for the extra burden it places on my family and friends.

After my diagnosis I felt like I lost the certainty I believed I had over my health. Of course, none of us has a guarantee with health, but an MS diagnosis definitely strips whatever certainty you thought you had.

Overtime, I started to wrap my head around it and paved my path in managing it. For me, that’s an integrative approach with medicine, nutrition, essential oils, exercise and faith.

And this approach has served me well. My lesions are inactive and there has been no new activity since my diagnosis almost three years ago.

However, the one area that I struggle with is the unavoidable impact the diagnosis has on my family. I can manage my own emotions, but I don’t want to hold my family or friends back from living their lives.

It can be something as little as not being able to sit near a fireplace, go in a hot tub or be outside in the warm summer sun.

Some days it’s the annoyance of having an extremely selective list of restaurants we can go to because of my food restrictions.

Then there are the times when we have to cancel plans completely or come home early because of the fatigue.

Because MS manifests so differently in each person, the “setbacks” are going to look different for everyone, but the feeling can be the same.

Guilt.

What I’ve come to realize over the years however, is that I did not choose MS, nor is there anything I did to create this disease in my body.

But, like it or not, it’s here to stay… until a cure is found.

So, I have a choice.

I can choose to add another emotional struggle of guilt into the mix for the impact I believe this to have on those closest to me.

Or, I can choose to accept that this is part of my life. I can change my mindset and attitude toward it and therefore create a more positive experience for both me and my family and friends.

Adding guilt to how it may impact those closest to me doesn’t do any good to anybody.

What does help is being hope and honest about my needs – both physically and emotionally.

I need to drop my ego and the mindset that I can do things all on my own without any help. The reality is MS diagnosis or not, we are created to live in community. We were never meant to live in isolation.

I also need to drop the assumption of how my family and friends are feeling about my diagnosis.

I absolutely love “The Four Agreements” by Miguel Ruiz.

  1. Be impeccable with your word.
  2. Don’t take anything personally.
  3. Don’t make assumptions.
  4. Always do your best.

I find them to be great anthems on how to live with MS – especially about not making assumptions.

I’m assuming that my family is feeling extra burdened. I’m assuming a lot of things that may not be true at all.

We may be the person that helps them to realize the importance of rest.

We may be the person who teaches them to listen to their body and honor its needs.

We may be the person that helps to open their hearts to a more compassionate way of living.

So, I’d invite you to join me in support of one another to embrace the amazing support system we have around us. Welcome their support. Let them know how much they are helping us. And for goodness sake, let’s break up with guilt.

*Alene Brennan works with individuals living with MS and other autoimmune diseases to create a diet and lifestyle that will support their healing and disease management. She holds four certifications: nutrition coach, yoga instructor, personal trainer, and natural food chef. You can learn more about her work and follow her blog, recipes, and more at www.alenebrennan.com. Check her out on Instagram and Facebook, too!

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About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

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