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What People Should Know Before Trying to Give Advice About Healing From Illness

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I have been actively fighting against chronic Lyme disease and co-infections for over three years now and I am finally on the other side of my healing journey. But what people don’t know is that on the other side of the physical healing that happens, when you think you’ve climbed that mountain to the top and when you think you are on your way down to a beautiful luscious healthy meadow, a new mountain appears.

Somehow it looks steeper… and you’ve been exhausted from the battles of illness that tore at your heart and soul. You’re exhausted from clenching onto those wisps of hope, but you know you need to keep going. You need to keep moving forward because you’ve conditioned yourself to do just that. Trudge through no matter what obstacles and symptoms show up at your doorstep trying to take you back down into illness. I didn’t expect this mountain and now that I am beginning this summit, I am once again reminded of the alienation and misunderstanding that I felt when I was very ill.

These are some things I wish people understood about rehabilitation before trying to give me advice about this new phase of healing:

1. I am working through a ton of PTSD.

I had anxiety issues before getting sick but it was almost as if my descent into illness put a big pause button on these issues. I chose to not deal with my anxiety. To place it all in a box labeled “to deal with later” when I was exhausted in bed unable to move or even talk. It was too overwhelming to feel the physical pains I was in and I was lucky in a weird way that my neurological symptoms made it impossible to overthink things. I couldn’t articulate my emotions, I could barely even string them into a cohesive experience or moment within my own reality. I was watching myself go through the motions of existing.

The more symptoms I conquered and the healthier I became, the stronger my anxiety grew. I had the mental capacity to begin processing the trauma and anxiety of that experience. It began flooding my consciousness and continues to overwhelm me today even though I am almost in remission.

Every time I start to feel a trickle in my throat or my hips and lower back spasm I begin to wonder if it is the Lyme creeping back in and taking a hold of my body again. Every time I struggle to use my words, or when I process things closer and see people staring back at me with these glazed over eyes after I’ve said something I wonder if I made sense? Did I look crazy? Am I crazy? Am I too much of a loner? Will my brain ever come back? Will I be able to function again? Think again? Really work again? How will I begin to date again? How will I explain all this to a new lover? Will I be able to be healthy enough to have kids? Am I overreacting? Am I really this raw? Am I too sensitive?

There are so many things I am now noticing as triggers to these thoughts. Things that I try and work through. But it also impedes me within my healing journey, it makes me want to crawl into a hole. Deep down I know I’m not too sensitive, I know that I’m intuitive and empathetic and know my body. I now have a strong relationship with mind, body and soul, but am stuck in this phase of PTSD — where I am caring so much about what other people think and trying to speak up about my own experiences when others keep putting their opinions over my words.

2. I am still practicing preventative care. 

Yes, I am healthier now but I still have to practice so much preventative self-care to keep myself healthy. It’s like I am in this “no man’s land” between sick and healthy. No, I am not sick anymore, but I am also not healthy. I am functional, yes. I can walk again and plan out a week instead of only one afternoon or day, but I am still healing. I am still dealing with the aftermath of different types of treatment from the Lyme and my organs still need an enormous amount of support.

Furthermore, my health cure is not a cure… it’s remission. That is my healing goal and to get there, I still have to practice a lot of time-consuming and uncomfortable acts of self-care and discipline that are not like the beautiful blissful salt baths that we think of when we say “self-care.” My gut was completely destroyed after taking multiple types of antibiotics for over two years straight. I’ve had to be on a very restricted diet for over a year now and yes, it is hard for me, extremely hard for me to have to turn down coffee, chocolate, pasta, drinking, grains, avocado, coconut, and some other annoyingly difficult allergens that I must constantly be on the lookout for.

I am a low-maintenance girl who has had to become very high maintenance. I still need to put myself to sleep early in order to feel rested. I am still exhausted when I do two things in a day. The spoon metaphor will always be a part of my life. I cannot use all my spoons at once. I have to decide which ones I will use when and keep my energy for work. I spend the money I make back into my health. This means organic produce, supplements, herbs, energy work, acupuncture, yoga and day hikes in nature to continue to nourish my soul. I still don’t have the energy to stay up late and go out dancing at night even though you think I look and sound healthier, I know the consequences of that type of behavior and I’ve made too much progress to continue trying to be something that I am not anymore.

I am not blowing you off when you ask me to do these types of things. They are just not part of my life anymore. I am also not being a hypochondriac, and honoring my intuition and self-awareness is what actually healed me through this experience. Please honor that I know what I need to do about my body and the treatments and love I need to give it to continue to move forward. I am not asking you to change your life or beliefs just to respect mine as I respect yours.

3. My finances are a wreck.

The world doesn’t stop for you when you’re sick. If you are lucky to have a partner or family member help you somewhat maneuver your finances it will definitely help, but you will still be struggling hard once you try and pick back up where you left off. Struggling with chronic Lyme disease and with an “invisible illness” made getting disability benefits impossible for me. I had to rely completely on my mother who was also struggling and I’ve been working so hard to work and pay my way through all these bills that keep piling up. I am still paying off my taxes that I forgot to file from the year I first got slammed with all of my symptoms. I cannot work at just any job, if it’s too stressful and triggering both my PTSD and my health will plummet again.

This does not mean that I am lazy… this just means that I am still healing and that if I push myself too much too fast I do end up completely exhausted and sick again in bed. I cannot move out of my mom’s house yet because I am still in debt from all the expensive treatments that my health insurance would also not cover. Trust me, I would love to have my own space and I am working towards getting it but do not judge what you don’t understand or try and understand.

I am also completely changing gears in my professional life. I want to be a healer and am working towards that in my career. At the same time, all of the certifications for healing are expensive AF and don’t care if you’ve had real life experience with healing. While working to figure out how to afford this and begin doing what I really want to be doing with my life I am trying to scramble out of this financial chaotic mess that has me chasing my own tail, feeling burnt out and hopeless in a way that echoes those days when I was ill and bedridden.

What I wish others would understand is that I am working my ass off and for those who are in my life to please have some compassion and patience with me while I work through these obstacles. Please do not offer any more advice or judgment on a situation that is completely different from your own if you won’t even hear my own side of it.

I am sharing this because there is this misconceived notion that you get sick, you rest, and then you’re better and “healed.” This is not the case. You are not just better in one second – I don’t think with any type of illness but especially not with chronic illness. It’s an organic, slow and steady process that continuously unfolds throughout your life. It is not black and white.

If someone has been very ill in your life and working through rehabilitation, please think before you speak about their progress. Your intentions I am sure are genuine and your heart is in the right place but please understand that when you speak without understanding this process, you are in some ways silencing our experience.

If you would like to support and empathize with us, allow us to own and process our experiences and the challenges we face in them. Let us speak for ourselves and the progress we are making or struggling with. Honor our stories by recognizing that we are agents in this process whether you may or may not see it, we are. Our life path is different, our time frame is different, our obstacles are different. We do not critique or analyze your journeys so please do not do that with ours.

I never spoke up about what bothered me when I was sick. Half of that was because I struggled with an enormous amount of neurological issues that made it impossible to read or write. The other main reason was because I was afraid of continuing to alienate others if I spoke my truth. Now that I am processing, now that I am in this other phase of healing with different obstacles but damn as difficult challenges I do not want to be intimidated into silence because I am worried about what others will think if I actually speak up and out about my experience. I will never be the same person I was before getting sick and nor do I want to be. That would be moving backwards.

I have learned so many important lessons and values through this experience that have made me not just a warrior in the face of illness but a compassionate and hopeful human being whose life purpose is to continue on her own healing journey and helping support and empower others in theirs. I know others will continue to fall out of my life but I have also seen new people and support groups come into my life. This is the hope that I continue to hold onto as I move through this new phase of challenges and healing within my journey.

Originally published: January 6, 2019
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