Psychotherapy Should Be Part of Lyme Disease Treatment

From anxiety and fear, to loneliness and depression. Relationship issues to loss of a career. From pain to uncertainty and the uncertainty of the pain. Your emotions run the gamut, and most of those all in the same moment. Most likely, they often run this gamut over and over again, all day long. I know how scared I was every day, and I see how scared you all are in your posts and questions. I wish that I could be there personally for each and every on of you. Since I can’t  travel through space and time I offer you this…Psychotherapy should be part of everyone’s Lyme disease treatment protocol.

We have all said at one time or another the old adage, I wish I knew then what I know now. This sentiment resonates with me so intensely as I navigate therapy and life post-Lyme disease. What I know now is that the trauma of treating Lyme disease is real. And, if you don’t address those emotions as you go they’ll follow you around long after you reach remission.

The lasting effects of trauma

I found this definition of trauma at CAMH, The Centre for Addiction and Mental Health in Canada, and I really like it. They define trauma as, ‘the lasting emotional response that often results from living through a distressing event’. The definition goes on to explain that, ‘experiencing a traumatic event can harm a person’s sense of safety, sense of self and ability to regulate emotions and navigate relationships.’ Furthermore, ‘long after the traumatic event occurs, people with trauma can often feel shame, helplessness, powerlessness and intense fear.’ Does this ring true for you or what?

I think it’s worth noting that they claim all of this occurs from a single traumatic event. They have yet to address the trauma of a long-term battle with chronic illness. If all of this can occur from one event, a car accident, experiencing the death of a loved one, how do you think living through daily trauma for days, months, years will affect your mental health? I’ll show you what it looks like.

Signs of trauma

All I have to do is look back at my journal entries during my treatment. It is stock full of the trauma I experienced during those two-and-a-half years. Truly, it makes my heart break a little every time I reference it for a post like this. That poor woman was so full of intense fear, loneliness and powerlessness, it oozes off the pages. Here are a few excerpts from my journal:

Undated entry

-I laid down to sleep tonight and immediately starting to dream. I was crawling through straps of black  tar, nearly encompassed but could see light on the other side. There was a woman on the other side, laughing, carefree…a glimpse of my former self. I’m so close, but not quite there. I hold on to her…I’m coming. ∗Written in the middle of the night upon waking

9/22/2017

-Sometimes I wonder if I’ll ever feel better…and when I do, what will it feel like to not always feel crappy. What will I do with myself as a healthy individual? What will it feel like to not always be a little scared, unsure of what tomorrow will bring?

11/9/2017

-I just want to feel human again. I feel like a shell of the person I once was. It’ s not just energy, or lack thereof, but a loss of emotion. I just feel sort of dead inside. Life has very little meaning. It’s just get up, eat, take meds, sleep, eat, take meds…repeat, repeat, repeat…I want to want to do things again, anything. It’s just never-ending. I have no passion for life, just survival. I feel empty, searching and trying desperately to find excitement, even the smallest ounce. I wouldn’t even call it depression, just empty, numb. I am happy, it just feels so muted. I look forward to meeting myself again when this is all over. I know I’m still in here!

11/11/2017

– I don’t even know what to say anymore. Much of the same. Afraid to leave the house because I don’t trust myself to drive. Shakiness getting worse again, so tired..

1/10/2018

–So, I have pretty much stopped journaling. I’d like to say it’s because I’m all better…mostly it’s because I’m tired of journaling. I’m tired of being sick. I’m tired of writing about being sick. Things are better than they were. It’s not all doom and gloom, but I still feel pretty rotten most the time. I found out yesterday my body isn’t producing progesterone so add another pill. Whether this is because of the Lyme or not, I’m not really certain. My legs cramp up on me if I stand or walk around too much and I’m tired all the time.

When I read those entries I am reminded of how depressed, lonely and desperate I felt. That daily trauma was exhausting and demoralizing. I needed someone to reach out to so badly but at the time I didn’t know how. All I could think about was putting one foot in front of the other. Keep my head down, my eye on the goal and keep trudging. God, I could have used therapy as a regular part of my treatment. Maybe, just maybe, I wouldn’t still be in treatment today if I had been able to address my fears and loneliness along the way.

**If you’d like to read more about my battle you can pick up my book, The Battle Within: My Lyme Story.

How trauma manifested for me

I was probably 28 months into treatment when my symptoms of complex PTSD began to emerge. It began with flashbacks that left me reeling. One moment I would be fine and the next minute I was fully emerged in a terrifying memory from my early days of treatment. The flashbacks led to panic attacks that ensnared me. I recoiled from the world. I became a prisoner again in my own home. Just as Lyme disease was setting me free I was confronted with a new enemy, fighting for my spirit. And so, I stayed home where my bed was the only place I felt safe. Then, the night terrors began. At this point, I knew something was terribly wrong and I sought professional help. Therapy that, in my opinion, I should have been receiving all along.

What I know now that I didn’t know then

The trauma of treating Lyme disease is real. I also know that if you experienced trauma as a child, the very real anguish of treatment can be exacerbated exponentially. This in turn, can slow down your progress in treating the disease. Essentially, you’re now fighting a battle on two fronts. You need a comrade to cover your back and hand you weapons so you can be the hero of your own story.

If I could go back in time and change anything about my treatment protocol, I would insist on therapy playing a huge role during my battle. I have learned so many amazing tools since I started seeing a therapist for my complex PTSD. Tools that would have been invaluable during those dark days. Things like tapping, nature meditation, journaling and the superhero pose. These are such easy tools yet they’re very effective. Aside from the tools, simply having someone to vent to is irreplaceable. Being able to share your fears and anxieties with a qualified, third party can be so rewarding and revitalizing.

Know that you are not alone

Nearly every day I see a post in a Lyme disease support group of somebody ready to end it all because of the insufferable pain, uncertainty, loneliness and fear. It breaks my heart. While I can totally relate, I believe it is completely avoidable. I encourage all of you to reach out for help. You are not alone in this!

Don’t allow others to shame you by saying you’re just depressed or, why don’t you just walk it off? Most likely you are depressed. So own it. You can tell them, ‘Damn right I’m fucking depressed. I have this disease ravaging my body and nowhere to reach out for help. I need a helping, supportive hand, not shame. If you can’t be that for me, then I can’t have you in my life right now’. It is perfectly normal to be depressed. The caveat is admitting that you need help. I can tell you from experience, seeking therapy is the most important step I’ve ever taken.

There should be a vast web of mentor programs in each community, that are free and easy to find. (There are people who are working on this sort of thing.) The ability to speak, not only with your doctor, but with a peer who has stood in your shoes, is invaluable. I wish I had had that. Seek it out. Support groups are available. They can be an important part of your battle and recovery. But, I still recommend finding a therapist. We all need someone to talk to, especially during traumatic life upheavals. Keep fighting Lyme warriors!