24 In LIFE/ Vent Sesh

But You Don’t Look Sick: Living with Transverse Myelitis #VentSesh

The Pain you Cannot See; what it really feels like to deal with a chronic, invisible illness // the modern savvy #health #neurologicalcondition #chronicillness

I don’t look sick.

In fact, I am proud to say I look really healthy.

You’d never know that I’m often in some level of pain. In fact, you might look at me and think she’s for sure exaggerating. I promise you that I — like others living with a chronic invisible illness — am not.

But You Don’t Look Sick: Living with Transverse Myelitis:

I have transverse myelitis, a one-in-a-million neurological disorder characterized by inflammation of my spinal cord. Turns out, that the spinal cord operates pretty important stuff in our bodies. 😉

I’ve been lucky in the sense that I’ve had a largely huge recovery. When you see me, you would never know that eight years ago I was paralyzed from the chest down, with doctors uncertain if I’d walk again. When I was admitted to the hospital with a four-month-old at home, I couldn’t even hold a pen.

A year later, I looked better. Except, like so many others with chronic conditions, I still have plenty of “stuff” below the surface.

It’s not like we have a cast on, are in a wheel chair or have a physical indicator that we’re not feeling well. Someone with MS, an auto-immune disease, Lyme disease, chronic migraines, depression, etc, all have varying levels of pain not externally visible.

Thinking of my former self, I can imagine it’s virtually impossible for a healthy person to understand.

Or for me to explain.

It’s just that how do you explain to someone who’s healthy inside and out that even the most basic day of someone with a chronic illness is nothing like theirs? 

Then it clicked.

Someone in the transverse myelitis Facebook group I recently joined shared the “spoon theory,” by Christine Miserandino. If you know someone with a chronic or invisible illness, this read is so worth five minutes of your time.

As I started reading, I felt eight years of feelings burst inside me.

This.

This is how I feel every day. I don’t vocalize it. I don’t like to give power to it.  And I never had such a helpful way to explain it.

I started hysterically crying. It was an incredible “a-ha!” combination of comfort and understanding.

The spoon theory basically explains how anyone with a disability or chronic illness has a reduced amount of energy available for any sort of activity and task. If you start with 12 spoons today, how do you use them? Shower, take a spoon. Get breakfast ready for the kids, take a spoon away. Run an errand, take a spoon. And, while you can sometimes borrow a spoon from tomorrow, you’ll eventually run out. Yup, I get it.

As incredibly grateful as I feel to have family and friends support me, I can’t expect them to fully get my daily life.

Honestly, it’s only been in recent years that I’ve fully understood that the lack of understanding — for my rare diagnosis and that I’ve been fighting against having a disorder since it was invisible to everyone — made me feel compelled to “show up” even when I candidly didn’t have the strength to be standing.

I’ve been lucky along this journey to now have four friends who I love like sisters who also deal with invisible illnesses. Only one has transverse myelitis but we get each other in a way we have each discussed others simply cannot. They’re fiercely strong, beautiful, driven, inspiring women who fuel me and get me in a powerful way. I’m eternally grateful they’re in my life.

So, I’m writing this because I think we can all benefit from making the invisible visible.

You see my face and you see a healthy person.

(Thankfully you also see a happy person… because I am!)

You don’t get that my feet and legs are constantly tingling, that my feet can’t tell the difference between extreme hot and cold (lovely for pedicures!), that my back can feel like it’s burning from the inside and I can have intense exhaustion that I wish was the level of a regular working mom. And, that doesn’t even include my bladder that doesn’t work at all and requires me to use a catheter to empty.  I know where every single bathroom is wherever I go or wherever I am traveling. The bathroom situation alone at Disney and concerts and art festivals and green markets gives me intense anxiety.

Please know that I’m not writing this for pity in any capacity.

This diagnosis has interestingly given me so much; I have an incredible level of compassion, strength and willingness to fight for myself, for self care, to think less about what others think about me, and to know I’m capable of anything. It’s reminded me about what’s important in life, and the type of people I will surround myself with.

While I’m definitely not looking to be the poster child for the “invisible illness crew” (are we a thing?! ha!), we could all use a reminder — me included — that people have stuff.

And, that kindness, compassion and a little extra patience are always a good decision.

Loving this transverse myelitis feature? Take a look here for more of my life favorites!

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  • Reply
    Kay
    October 31, 2018 at 6:02 PM

    Thank you for sharing. I, too, experience an invisible (sort of) condition. When others hear my brain tumor is benign, they mentally assume it’s no problem. I’m so grateful it’s not cancer – but benign doesn’t mean it hasn’t impacted my health. The tumor took most of my hearing in one ear but left me with loud tinnitus on that side. We were designed to use both ears to hear well, so this is no fun. My face on the affected side is partially paralyzed. I can’t close that eye so there’s now a gold weight in my eyelid to help close it. There’s a constant metallic taste on half my tongue and very little real taste. My facial nerves have re-wired after the initial paralysis so now my eye closes when I smile among other weird muscle connections. My facial expressions are interesting! So I completely understand about the invisible impacts. Like you, I have discovered my own resilience. I’m just now moving past this all to a new and better place. And I’ve met sooo many nice specialties, making me grateful for healthcare. Thank you for providing safe space to vent! Hugs!

  • Reply
    Jessica
    October 16, 2018 at 4:02 AM

    Oh wow, I’ve heard of this condition before, and I can’t imagine what you’ve been through dear. This is such an inspiring read, and I love that you have the strength to share such personal experience like this one. People with the same condition will stumble on this post and feel empowered, and that they’re not alone. Wishing you all the best Alyson!

    Jessica | notjessfashion.com

  • Reply
    Mike
    October 11, 2018 at 2:39 PM

    Awesome post. Fellow TMer here. The spoon theory has been my go-to thing to explain what I’m living with. Seriously Alyson..people like you are so important to people like me and the countless others trying to figure this thing out. It’s shows us what is possible. Thanks for sharing. Can you share the link to the Facebook Group? Would love to join.

  • Reply
    teresa shiner
    October 10, 2018 at 10:56 PM

    Hi! Thanks, Alyson!! You are a beautiful, articulate and hardy woman. TM slammed into my life 5 yrs ago and for some dang reason, this # 5 anniversary feels huge! I was affected from T-2 down, have all the issues you have discussed and am feeling weary of trying to be ‘normal’. I am forever grateful for my recovery and my ability to intentionally shake a leg (when it doesn’t spasm of it’s own weirdness).
    Thanks again!!
    Teresa

    • Reply
      Alyson
      October 15, 2018 at 10:05 AM

      You are so kind, Teresa… thank you! I felt the same about five years. For some reason I had it in my head if I could make it to five years out without another episode I was in the clear. It felt monumental to get there so congratulations to you. My counselor helped me “mourn my old body” and embrace the new. Perhaps not normal, but who is? Embrace this perfectly imperfect version of you today. Hugs!

  • Reply
    Jackie
    October 10, 2018 at 10:43 PM

    Alyson, I love your blog for many reasons, but your honesty and openness about what you and others go through, well, it gives me hope. Hope that if Alyson is fighting the good fight, then I can too. Hope that there are people out there who understand and struggle too, but have found ways to persevere and be happy and to shift the focus to living full and meaningful lives. I hope I said this right. I am not happy that you or anyone has been through difficult times. I’m just happy there are people out there who show me how to be strong and happy.

    • Reply
      Alyson
      October 15, 2018 at 10:07 AM

      I absolutely understand what you mean, and am incredibly honored if my journey can motivate you in any way. You are capable and even if it takes a little longer or if it’s a little harder, it doesn’t mean we can’t make it happen. You can make it happen, find happiness and lead a life that’s meaningful to you. That’s all that matters. <3 Hugs, Jackie!

  • Reply
    Kara
    October 10, 2018 at 10:19 PM

    Thank you for sharing this. I’m so sorry for what you go through but am impressed with all you do nonetheless. I read about the spoon theory awhile back and it also brought me to tears. I also look “fine” and yet am completely disabled, which is so hard for people who just look at me to understand. I have a deteriorating problem with the joints and nerves in my neck and skull that doctors can’t figure out or treat. I have pain and/or migraines 24/7. I can’t sit, lie down, or move my head without excruciating pain. I literally have to keep my head in one spot, staring at the ground, to keep the pain from escalating. I haven’t been able to participate in life for years, and now I can’t even look up to watch it pass by. But like the spoons, I have to push myself to take care of my kids and get through the day, and then deal with not having enough spoons left. But I look fine, and it’s so hard to explain why I can’t do normal things, even as simple as sitting at s movie. Sorry. Just venting! It’s so important to treat others with compassion because you have no idea what struggle they are coping with on the inside, and often smiling through the pain so no one knows.

    • Reply
      Alyson
      October 15, 2018 at 10:10 AM

      Oh, Kara… you are so incredibly strong. Vent all you want because that’s a lot. You deal with so much, and as you acknowledged, it’s compounded when others can’t see the pain beneath the surface. If only they could, they’d understand just a little more, provide a little more compassion and grace. Sending you hugs and please know, that even though our stuff, and the stuff of so many other women and men that I get emails for are different, you are not in this alone. We are here for you. We get you. <3

  • Reply
    Jess
    October 10, 2018 at 4:05 PM

    Thank you for writing this! I am 35 and was just diagnosed with Rheumatoid Arthritis. It is a difficult thing to have gone to bed one night healthy, and have woken up the next sick. Sometimes it’s hard for others to understand that even on my best days, though I look fine, there is almost always some level of pain. While I don’t wish it on anyone, it’s nice to know that there are others out there who get it!

    • Reply
      Alyson
      October 10, 2018 at 5:33 PM

      Jess, I’m so sorry to hear but yes, I do get you. I so get it (my condition also suddenly appeared at 30 years old). Please continue to prioritize you, to fight your health, and to equally give yourself grace and compassion on those tough days. I’m here. <3 Hugs!

  • Reply
    Mj
    October 10, 2018 at 3:35 PM

    Thank you for posting this! I’m sharing it with a dear friend who has Psoriatic arthritis and complex ptsd. She was just noting how many people don’t understand her, especially when she has fatigue. I’m hoping it will help her explain to others and they in turn will have empathy.

    • Reply
      Alyson
      October 10, 2018 at 5:35 PM

      Hi there… thank you for sharing it with her because she’s not alone even though I understand how isolating and frustrating that feels. And, you sound like an INCREDIBLE friend. She is so lucky to have you. THank you for being you.

  • Reply
    Shayna
    October 10, 2018 at 12:20 PM

    Alyson, thank you so much for sharing this! I have MS and a co-worker shared the spoon theory with me earlier this year. It was also a game changer for me. I shared it with my husband and now when I talk about spoons, he understands more than he did before. Hopefully by sharing this you can create that “aha” moment for others as well!

    • Reply
      Alyson
      October 10, 2018 at 5:37 PM

      Right?! It makes it so clear and I’m so, so happy to hear how it has clearly helped create better communication between you and your husband. I’ve started using the analogy with Adam as well instead of simply saying, “I’m really tired” or my legs feel done. This resonates!

  • Reply
    Shira Rosenbluth
    October 10, 2018 at 10:46 AM

    Thank you for sharing this. So important that people realize we never know what someone is going through!

    • Reply
      Alyson
      October 10, 2018 at 5:38 PM

      Exactly… thank you for taking the time to read, Shira!

  • Reply
    Heidi
    October 10, 2018 at 9:05 AM

    This is a must read Alyson and I can so deeply relate! Fighting chronic and untreatable pain is exhausting enough without feeling like you have to appease everyone else or offer up some kind of and explanation. It’s so easy to judge but everyone is fighting some kind of battle. Thank you for always being so candid and honest.

    • Reply
      Alyson
      October 10, 2018 at 5:39 PM

      Exactly… you’re so right. It’s like you’re internally trying to just manage all of it, without dealing with what and who’s around us. Thank you for being vulnerable and sharing here as well. Hugs!!

  • Reply
    Kimberly Smith
    October 10, 2018 at 7:24 AM

    As you know, this post resonates so deeply with me. I’ve had far too many situations where people have judged me because of things I wasn’t able to do…when, in reality, I was held back because of my illness. It definitely hurts and you get tired of having to defend yourself constantly. The spoon theory has helped me so much in explaining to my family & friends how it feels to have Lupus – so I love that you shared it here so others can also learn. Awareness is everything.

    • Reply
      Alyson
      October 10, 2018 at 5:40 PM

      Awareness really is everything, and you make such a good point about how people judge because they cannot see. At the end of the day, I’ve realized those are not people who I’m going to win over in life anyway, right? They’re always looking for something. FOcus on you, and those who love you. That’s all that matters. <3

  • Reply
    Kellyann Rohr
    October 10, 2018 at 6:58 AM

    Thanks for sharing this – I think it’s a helpful reminder for us all not to judge- we never really know what someone’s dealing with do we? I am so inspired by your story because I’ve been a reader of yours for a long time and I’ve read what you’ve shared about your illness before, I am in awe of all you do despite how you feel. You are an incredibly strong woman and I admire you!
    xo,
    Kellyann
    http://www.thisblondesshoppingbag.com

    • Reply
      Alyson
      October 10, 2018 at 5:42 PM

      You’re awesome Kellyann!! Thank you so much! We really never know what’s going on with someone, whether it’s something like this or any type of struggle. I know I’ve used this diagnosis as a reminder to myself, too.

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