I was diagnosed with multiple sclerosis in 2006. Although my life has taken many twists and turns since then, I’ve kept my chin up with my own brand of spectacularly relentless optimism.
Recently though, after taking our first family vacation in two years, I was feeling a bit down. Prior to this trip I hadn’t been well enough get on an airplane and travel much, so my husband and the boys had been vacationing without me, which I fully supported. I don’t think it makes sense for others to be deprived due to my limitations.
However, when we returned from our trip, I wasn’t feeling awesome. Some of my symptoms had increased and I felt somewhat anxious about that. I felt grumpy that instead of working out to feel good, I was digging myself out of a hole. It doesn’t really make much sense on a rational level, and yet, a lot was stirred up within me. I think travel does that to many people whether we’re dealing with chronic health issues or we’re in perfect physical shape.
In any event, to clear my head, I went down to our basement to have some quiet time. I wanted to move and stretch and do gentle yoga. As my mind cleared and my anxiety died down, I was filled with new feelings that were not familiar to me.
In my typical world outlook, everything has a reason. Even the smallest events have meaning, and my life is filled with purpose. But, for a few minutes, I let that view unravel and allowed my mind to wander. As my thoughts moved around, I wondered, what if I have this illness for no reason at all? What if I’m sick and it simply sucks? What if there are no lessons to learn? What if this isn’t supposed to make me a better person? How can I make any sense at all of the damage this disease has done to me, and by extension to my family?
For a few short minutes I let myself feel the weight of having been diagnosed with this serious neurological condition that we refer to as multiple sclerosis. I let myself truly understand the reality of it. From that I finally permitted myself to utter a silent complaint, and I fully came to terms with the fact that I don’t enjoy dealing with the limitations, complications, and baggage that hitchhike along with MS. The worst thought of the bunch swimming through my head? What if I don’t get well? Ever?!
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In those few minutes, with all of those questions splashing around the ocean of my mind, it was the perfect time to stop thinking and let the tears sprout from my eyes and splatter across my face.
Then something happened. In letting go of my iron-willed optimism I was able to grieve a bit, and it felt good to be sad. It felt congruent. I had let go of some stubborn determination which was covering up anger and more than a touch of perfectionism. I had admitted to myself, that I don’t like this. In fact, I don’t like any part of it!
I’m totally ready to let go of this disease if that can happen. I work towards that end every single day in everything I do, from carving out enough time for sleep, to eating well, and getting just the right amount of exercise, along with prayer and affirmation. At the same time, I’m also ready to deal with whatever comes my way.
I’m relieved that I’m no longer forcing myself to pretend that I’m ok with the burden of this disease, because there’s nothing ok about living with a disability like MS. It’s awful for me, in ways that I will not go into here. It’s equally rough for my husband and children. They are tasked with the incongruity of watching a loved one suffer from a major illness, while carrying on with the normality of their everyday lives.
Alexa says
You nailed it with the world “grief.” Times arise when I grieve for my son and what his future will hold or not hold. Grief is powerful and healing. We love you Elana!
Elana says
I love all of you guys so much Alexa!
Tracey says
I finally had time to come back and read this post, and I’m so glad I did. I can so relate! Thank you for sharing a “behind the scenes” glimpse from those of us with chronic/invisible illness. I think the mindset of maintaining hope and positivity can be the hardest part. Glad to be on this healing journey with you!
Elana says
Tracey, glad we are in this together :-)
Pat Katz says
And yet you constantly and lovingly think of the welfare of others! I thank you from my heart and soul! I ordered my monthly delivery of Bone Broth! Thank you so much for the info!
Elana says
Thanks so much for your kind words Pat! I’m so glad you ordered the Bone Broth, it’s delicious. When I make mine, I add 1/8 teaspoon of sea salt and 1/8 teaspoon of potassium which adds an incredibly rich flavor dimension :-)
Chrissy says
Hello Elena,
Thank you for your very personal and candid thoughts on living with an autoimmune disease. I am also living with one, although it is not MS, and I too lament that I have to “manage symptoms” and wake up to unhappy surprises and lackluster health frequently. I have also enjoyed reading your Paleo recipes and modifying them for my tastes.
About a year ago, I came across an article by starch-based diet advocate, Dr. John McDougall. I’m sure others have mentioned him, but a testimonial I recently viewed on YouTube made me think of you and this blog post reminded me of It. In the testimonial, a woman describes how the diet has all but eliminated her MS symptoms. Here is a link: https://youtu.be/PLnUACQC388. Dr. McDougall also frequently cites the work of Dr, Roy Swank, whose work may be of interest to you.
I began a plant-based, lower-fat, higher-unrefined-carbohydrate diet just over a year ago, and in about four months I was able to cut back on my meds considerably, and noticed a huge improvement in overall symptoms. I also have less hunger, brain fog, and cravings. It has been a really big mindset change for me as I had adhered to a low-carb diet for years.
I know you have had success with Paleo, but if you are frustrated and results are stalling, it may be worth your time to explore this more. To be sure, there is a lot written on the subject both pro and con, but I believe every person’s “ecosystem” is different and perhaps there is something of value in there for you.
I wish you much success on your journey to wellness, and will keep checking in.
Sincerely,
Chrissy
Elana says
Thanks Chrissy!
Kerry Winkler says
I agree Chrissy. I have MS and have tried many things. In Dec I learned about Dr. Swank and his MS diet. It took my a few months to wrap my brain around it as it is so different than all the current diet/eat healthy plans. I started it the beginning of March and I am seeing positive results already. I found a Facebook private group with MS patients who have been on the diet for 30+ years with great success. The Swank diet is not just about what you eat but rest and stress levels, too. Thank you, Chrissy for sharing about Dr. Swank. This is the first think in my 5+ year journey with MS that is truly making a difference with my symtems and my body loves it!! Kerry
Marie says
Hi Elana,
Thanks for this post. My first impulse is to give advice about this or that possible treatment or cure, but many others have done that and in the end it’s best that we each do what feels right for us individually. (Although it’s true that you never know when someone might point to something that you’ve been waiting/hoping for.) I know that when people offer me advice or recommendations for my own chronic condition, I rarely take them unless it sparks something in me. That is something I’ve learned with experience, and I get the sense that you have too.
I admire your courage, your openness and your beauty that shines from the inside out. Oh, and your recipes of course…
May you find exactly what you need to heal. Godspeed.
Elana says
Marie, thanks so much for your incredible words, they mean the world to me :-)
Katie says
Prayers and Blessings over you dear one, thank you for your incredible effort to help so many that you feel compassion for through your own journey with M.S. I am in awe of how much work you do to bring awareness coupled with DELICIOUS recipes to the laptops around the world. You are a remarkable woman, shine on and thank you for bringing clean food to my family’s belly’s…including my father with M.S. :)
Blessings,
Katie
Elana says
Thanks Katie. I’m so glad we are on this healing journey together :-)
Elizabeth says
Thank you for this post. I too suffer from a chronic illness, and experience a complex web of feelings: gratitude for good days, anger at the illness, worry about holding back my family, frustration, fear that I will get worse, guilt about feeling sorry for myself when I know people who have “major” illnesses with “real” suffering (friends and relatives with cancer, for example), self blame, and more. Your website and books have helped me a lot!
Elana says
Thanks Elizabeth, I really appreciate your thoughtful words and am so glad we are on this healing path together.
Teresa Loeffler says
Elana,
Are you aware of The GAPS Diet by Dr. Natasha Campbell-McBride. MS falls under the Gut and Physiology Syndrome. I am also under this and currently been on this protocol for 17 months and have had much success. My goal is to cure my allergies, asthma and rosacea. MS is also curable. Thoughts and prayers are with you. Teresa
Elana says
Thanks Teresa!
Claire says
I am so sorry, Elana, that your journey has been difficult lately. You have been a help to so many; I do pray that you receive the help and healing that you need. I am thankful for your honesty and your wonderful recipes. I know, of course, that you would prefer to be free of this burden, but I believe that all trials have blessings, though pain often obscures these blessings. Perhaps a blessing of your trial is that you have been humbled by your ordeal, which in turn draws many of us to you. Part of your appeal is your openness and relatability. Praying that you are encouraged today. Many thanks! Claire
Elana says
Claire, I am so touched by your kind words. Thank you :-)
Emily says
Hi Elana. What a beautiful articulation of what everyone suffering something chronic has ever felt. Whether or not there is a purpose to suffering isn’t a question I have an answer to, but, I can say thank YOU for being here and sharing the way that you do. You encourage and inspire so many. I wish you continued healing and thriving health as you navigate through the ups and downs. I’m sure your family is super proud of you too. – Emily (of the CoconutGal variety:)
Elana says
Emily! It’s so nice to hear from you and see your warm words on the page. Thanks for being a long distance friend all of these years :-)
Susan Chen says
Thank you so much for sharing, Elana. I had no idea you were afflicted with MS, after following your recipes all these years. I wish you an easeful journey through it all. The mere fact that you can share and acknowledge your emotions and the challenges of the process show us that you are a witness to them and not being consumed by them, that your inner light and true essence is NOT your illness. That’s HUGE. You are showing us all that you won’t let this own you, which is truly inspirational.
On another note, for what it’s worth, we see an acupuncturist here in NYC that has worked very successfully with MS patients and helped them recover. She practices Classical Chinese Medicine (not to be confused with the abridged, Traditional Chinese Medicine tradition) and believes that in many cases MS is an issue of dehydration and performs acupuncture to address that certain loss in communication in the body. It’s a different approach, but I trust her so much that I thought I would pass that onto you.
All the very best to you and your family!
Elana says
Thanks so much Susan! I appreciate your thoughtful comment :-)