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3 Emotions That Hit During a Lyme Disease Flare and What You Can Do About It

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As I sit here writing this, my body is fighting a particularly bad and arguably one of the worst Lyme flares I have had in a long time. It is testing my mental stamina and bringing up a lot of held in and mixed up emotion. When chronic Lyme and co-infections rear their ugliest heads, I find myself frustrated, sad, and angry about many things that come bubbling up. There are too many things to count and they are often impossible to articulate because they are
wrapped around each other in such complex ways.

I do my best to ward off these feelings so that I am better able to cope and focus on what I can do to alleviate the inflammation. However, warding off these feelings for me (out of habit) means that I put them in a mental box and lock them them away, judging myself for not handling it better. I have learned over the years and through recent discoveries that doing this does not work for me, and often produces more harm than good.

If you allow yourself to feel how you feel, you can better process your thoughts and emotions without self-judgment. Letting it out in healthy ways can make a big difference (especially with Lyme disease) in how you feel. I’m going to share a few of these feelings, in hopes that it makes others feel less alone and in hopes that it is helpful. I know these feelings are not just my own, but belong to an entire population of people just like me.

1. Frustration: The fact that most people do not understand that Lyme and co-infections go far beyond just physical illness, and include psychological and sociological symptoms, can be frustrating. Some people are admitted to psych wards with uncontrollable anger outbursts and odd personality disorders. Others experience depression and anxiety due to the disease itself, and not just as a result of coping. It can feel as though their brain has been taken hostage at some point or another, like someone else is controlling the things you say or feel or do.

What you can do about it: When I feel frustrated about this, I decide whether or not I want to try to spread awareness, or to just breathe for a few minutes and understand that this is a frustration that cannot be fixed in a day. If the frustration is too strong, I take a few steps back and just sit with the, at times, intense frustration, and then try to put the energy towards something constructive. If I feel like it’s something I can put into words, I do something like write this article. People will not become aware of this disease if you remain silent about the unheard struggles and seriousness of it, and against all stigmas, you should let your voice be heard. Who cares what they say. It’s a hard truth, and one that people would benefit from learning about. Use the frustration to make a difference, and make sure people know this disease is more than just physical.

2. Sadness: The fact that I have lost the ability to do so many of the things that make me happy and make me feel like me, that has at times caused an identity crisis. I started playing soccer at the age of 3, and for a girl who struggled with self-confidence, it made all the difference in the world and was a large part of who I was. Without it, I wondered and still sometimes wonder how to identify myself. I used to be extremely active, adventurous, athletic and down for anything. All of that has had to take a back seat. I used to be a lot more independent, but now am a person who needs more support. I used to be a much happier person, but now often struggle with periods of numbness and depression. These examples are just the tip of the iceberg. When you lose the ability to control your body due to disease, you often feel betrayed, because of who you are that is now stuck in a body that just can’t do what you want it to do. It is a tough pill to swallow, and an even harder thing to explain to people.

What you can do about it: I try to remember all of the things that I do have control over. I try to remember that just because I can’t now, doesn’t mean I won’t ever be able to again. I tell myself that even if there are things I will never be able to do, I can’t let it ruin the things that I can do. It’s so hard sometimes, and I tell myself it’s OK to still be grieving the loss of what I cannot do, even after all this time because grieving is not linear. I remind myself that I am not weaker for admitting these things, and am a strong person. I remind myself that it’s OK to have times where you throw in the towel and hate the whole entire world, and that doing so does not make you negative. I remind myself that I am not the depression that strikes. The positivity will come again. When you struggle to love the body you’re in, there’s a lot of turmoil. Try to take it easy on yourself for not being who you used to be because you are stuck with your body and yourself for life. Taking steps towards appreciating yourself and all your body puts up with can only bring more positivity into your life.

3. Anger: The fact is, nearly every single relationship and realm of my social life has been effected by me becoming ill. When you’re 21, it is the time that many around you want to go out and have fun in clubs, and this is not something I can participate in most of the time. A lot of what people want to do are things I just can’t do, which means making new friends is very difficult.

I cannot travel long distances with friends. Things such as long car rides, boats, and planes are out of the question right now because of the ways they make certain symptoms worse – and it can be embarrassing to explain the symptoms. I have lost friends due to various reasons surrounding my illness, and that has been truly heartbreaking.

There’s nothing I want more than to not struggle with this disease so that I can participate in things that would give me the possibility of making strong relationships with new friends and maintaining friendships that I already have. There’s nothing I want more than to be my true and complete self. I do not like what this disease has done to me any more than anyone else does.

I do not like that a lot of things that people think are in my control when it comes to keeping relationships with this illness, are not at all. I do not like the judgment from those around me. This particular anger encompasses a whole myriad of things.

What you can do about it: Not going to lie, this particular anger is so strong sometimes that it reduces me to tears. It’s one that I struggle with the most. What I try to tell myself when it comes to this subject is that I am doing my part. I go to therapy to help with the emotional struggles from being chronically ill and past traumas so that I am in a much better place to be with friends and to be social. I try to be as generous as I can and as giving as I can. I tell myself that I can only do so much, to hold myself accountable when necessary, and to let go of the times where things are truly not my fault. I hold tight to the truth that I will drop anything to help those around me and love being there for my friends, and I will not be surrounded by those who make me feel bad about being sick or doing what I have to do.

Understand that nobody will ever know what you’re going through, but those who truly care will never stop trying. Those that treat you differently? Let them go. Hold onto your truth, your family, and your support system. When it feels lonely and sad and you feel like people are leaving despite your best effort, just breathe. It will get better. Keep reaching out. It is an unfortunate part of any chronic illness for this to happen, but it makes you that much kinder.

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Originally published: December 29, 2017
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