Home » Multiple Sclerosis » Pulling My Head Out of the Sand and Coming Out of the Closet, In One Fell Swoop

Pulling My Head Out of the Sand and Coming Out of the Closet, In One Fell Swoop


 

I think I’ve finally arrived at the acceptance and getting on with it phase of what one goes through when learning they have a non life threatening disease or chronic illness. It took one year and four months to get here, but I have arrived.

Basically, it went something like this:

I’m living my life, albeit feeling as if I’m trudging through mud for some time, and one day my eyesight goes all wonky. The wonkiness persists for a few days and when there’s no sign of it letting up, my husband and I go to urgent care where my blood is taken. Results indicate I’m perfectly healthy. But my eyes tell me otherwise. I go to the eye doctor, where everything appears to be fine. But they aren’t! We enter the closet. Yeah, I think we entered together. Internet searches galore, and husband mentions what I’m experiencing to a colleague who tells him about someone they know who has Multiple Sclerosis (MS). We shut that closet door.

Once we suspect I might have MS, we look for neurologists with immediate openings in their schedules. But first, I must get a referral from my primary care physician. I don’t have one. My employer switched health care providers a few years ago and I never bothered to find one. So the scramble to find an available PCP begins. We find one, book an appointment, and at said appointment my blessed husband pushes for that referral so we don’t waste any time with further testing. An appointment with an available neurologist is made and within a week’s time I have an MRI  and spinal tap. A week after the spinal tap, we receive my diagnosis of MS… a month after my eyes went wonky.

I am fully aware of how very lucky I was to receive my diagnosis so quickly, and after experiencing my first relapse. I am so very thankful for this. I can’t imagine how torturous it is for those who experience relapse after relapse without a diagnosis. In all honesty, if it hadn’t been for my husband, I would have gone along with the further testing the PCP wanted. More likely in an attempt to delay the inevitable diagnosis.

It truly is a gift to know what is “wrong” with you. But as is said (in cartoon PSAs?), knowing is half the battle. In this case, the other half is figuring out what to do with that knowledge.

So, let’s see. I’m still in that closet. The door is locked and I’m communicating with the outside world through the walls of my closet. I’ve decided to treat my MS naturally and I’m really excited about what I’m learning. I want to share it with the world. So I fluff my feathers and start a blog. It’s going to be great! I’ll document everything I learn and help others newly diagnosed with MS and interested in treating it naturally. But some time passes and I’m not sure I like the idea of relegating myself to MS in that way. There’s more to me than MS. I don’t want to be defined, judged, and/or perceived by others in the light of MS. So I’ll just bury my head in the sand floor of my closet here, continue treating my MS naturally, and be angry that others might be judging me as a diseased person. People like boxing others up and slapping labels on them. I didn’t want anyone applying the diseased label to me.

Head. In. The. Sand.

That’s called denial. I could pretty it up however I wanted by telling myself things like, “I’m just a person who happens to have MS.” A true statement indeed, but in a roundabout way it becomes a belief system entrenched in denial. Especially to an MS newb. I’m new to this for goodness sake! I can’t yet own that statement in the right way.

Enter A New Earth: Awakening to Your Life’s Purpose, by Eckhart Tolle.  I’m really quite appreciative of what this book did for me. It reminded me that I can’t do a damn thing about other people. They will box me up, put a label on my box, and shove me on a shelf in their mental craziness. No matter what. They did it before I was diagnosed with MS, and they will continue to do so. I’m sure I was already in a box on their shelves. My diagnosis provided them with the opportunity to create another pretty label and put it on my box.

It can be hard to resist a pretty label.

Fast Forward One Year

To now. All that above the headline was drafted in July 2011.

Hindsight is truly 20/20. Reading the post now is funny to me… I was putting a label on myself! The closet was a nice big giant box I stepped into, and apparently shut the lid on myself. Like I said, pretty labels are hard to resist.

I’ve chosen to go ahead and publish this year-old draft because I think it’s part of the process some of us may go through when adjusting to our new reality. And the part about labels is important. And then the new part about applying labels to yourself is even more important. To hell with people who box you up, slap on a few labels, and then put you on a shelf. The real problem is when you do it to yourself, limiting potential options and solutions, closing doors you didn’t even know were open!

Don’t do that to yourself.

The MS label is a limitation. If you don’t look beyond it, your options for treatment will be limited to the ones your doctor provides. MS is an auto-immune disease. Auto-immunity is caused by chronic inflammation. Chronic inflammation is caused by a myriad of things, one of which is diet. Which of these myriad of things apply to you and what can you do about it?

You are now free to begin a wonderful journey of learning and discovery as you choose how to treat yourself.

 

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6 thoughts on “Pulling My Head Out of the Sand and Coming Out of the Closet, In One Fell Swoop

  1. “It truly is a gift to know what is ‘wrong’ with you.”

    This is what I tell those who are shocked and saddened by my diagnosis. It’s so wonderful to understand that there is a CAUSE for my fatigue, anxiety, paranoia, forgetfulness. In this way, it’s nice to have a label. It helps to explain that I didn’t make a conscious decision to be lazy about work or avoid my friends. I do as much as I can, and the MS label helps show my friends and family that I’m still a fighter.

    On the other hand, I think I was too proud of my brain, my grades, my work accomplishments and the praise I received for being a sharp thinker. MS has been very humbling, and it has let me see some of the ways that I thought others were choosing to be lazy, when really their brains just worked differently, whether it was from age, disability, or just because everyone is different!

    So I think it’s a new fine line to walk – I want people to understand my limitations without feeling like they have to do everything for me. I guess it’s more reason for disability advocacy and education 🙂

  2. MS isn’t a label, but it does give you an answer, a chance to take a deep breath and say, Ok, so now I know. What’s next?

    In my case, after the initial fears about the future, I realized that life really hadn’t changed and I carried on. I do everything that I want to do, I push myself, and when an exacerbation hits, I slow down and look after myself. Then I return to normal when I can. I’ve had MS for around 15 years and hope to keep living normally with it for a very long time. Even today, I had IV prednisone, came home, and possibly will return to work tomorrow or the next day. I won’t push it, but I wont stay home feeling sorry for myself. Fortunately, I work in an office healthcare setting with a desk job and health professionals that get it.

    • Thank you for your comment Heidi. Nice to “meet” you.

      I think MS can be a label. We have the choice to define ourselves by what’s written on a label, self-applied or not. Disregarding it as a label, as a definition of self, is truly the way to go. Some may even choose to receive it as a gift, an opportunity to assess one’s life journey and make changes.

      For me, in my 3rd year since being diagnosed, I seem to take two steps forward and one step back. But at least I’m ahead!

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